"The researchers studied 172 patients with autoimmune thyroid disease, and two control groups, and found that the 3.4% of patients with autoimmune thyroiditis had celiac disease, and the prevalence was only 0.6% and 0.25% among the control groups. The study also found that undiagnosed celiac disease may actually be part of the process that triggers an underlying autoimmune disease. In their findings they wrote: "We believe that undiagnosed celiac disease can cause other disorders by switching on some as yet unknown immunological mechanism. Untreated celiac patients produce organ-specific autoantibodies."
"Of perhaps greatest importance to thyroid patients, the researchers found that the various antibodies that indicate celiac disease - organ-specific autoantibodies (i.e., thyroid antibodies) -- will disappear after 3 to 6 months of a gluten-free diet."
Paragraph 1 above merely states what we all know already...once you have one autoimmune disease, you are more likely than the general population to develop another...that's a given. Do you have a link to the original text of this study? On what do they base their belief that undiagnosed celiac can cause other disorders? I see no reference to how this conclusion was drawn.
Likewise, paragraph 2 above...I'd have to see the study...how many subjects (the same 172? or was that a different group?), etc. Where are the results of the controlled study (one group eating gluten, one not) indicating how many from each group had antibodies "disappear after 3 to 6 months"? What controls were applied to the two groups?
You will also note that the discussion is about autoimmune celieac disease, not simple "gluten intolerance", which does not involve antibodies. I don't know how you extrapolate from this that a g/f diet will benefit those with Hashi's who are simply intolerant and further extrapolate that someone who neither has celiac nor is gluten intolerant is going to benefit. If there is a common link here, it's antibodies, and without confirmed celiac, there are no autoimmune antibodies involved.
With or without Hashi's, someone with celiac is going to have to scrupulously avoid gluten for the rest of their lives.
BTW, what was your antibody count before going g/f, and what is it now?
thanks for posting this link TamraW, I'm guessing that there's a typo in Mary's article and what she means to report is that:
"....3.4% of patients with autoimmune thyroiditis had celiac disease, and the prevalence was only 0.6% and 0.25% among the control groups...."
it is a small sample to be considered statistically significant but still really interesting, i think.
If I can muster the energy will check out the source journal she quotes and presume the link to the original research document will be there.
I finally saw an endocrinologist this week, after months of waitiing, and she is going to test me for celiac.
I'm wondering is whether there may be some kind of borderline (maybe subclinical) version of the disease that doesn't give such extreme symptoms as full blown celiac but does mean that gluten causes problems. Perhaps I just mean intolerance....it's a new subject for me I'm only starting to explore. I'm still resisting trialing a gluten free diet as it's such a radical step but my Endo did say it might be worth a try...she hadn't heard of Dr Kharrazzion so I couldn't ask what she thought of his book...I still feel like I'm feeling my way in the dark and it's so good to have this forum to hear what other people are considering...
hmmmm, all info is good and food for though, thanks for sharing.....
if you're going to be tested for celiac disease, you need to make sure you are consuming gluten, because if you are gluten free, the antibodies that they test for will not be being produced. I was just diagnosed with celiac last year and was diagnosed with Hashi's in childhood - celiac just went undiagnosed until I asked my dr to test for it. I didn't really have major symptoms - mainly inability to gain weight, fatigue, diarrhea without the pain usually associated with it, and poor immune system - yet all my antibodies were very high. not everyone with celiac has the awful symptoms, that's why so many people go undiagnosed for so long. I hope you get an answer!
oooh, thank you Jennarie, I didn't know that. I have been eating gluten so that's okay as the test was on Monday.I might get the results tomorrow. I work with a girl who is celiac and did have major symptoms so I thought, in my ignorance, that would be the case for everyone who had it nd kind of assumed that it couldn't apply to me although I definately get the sense that some gluten containing food doesn't really work for me. I will do some reading up now.
I have not had a problem gaining weight, the opposite unfortunately, I've put on around 20 lbs since this whole thing started, though I was super slim to start with so I'm not huge now, it is annoying. Fatigue, poor immune system and upset bowels definately resonate though.
I have Hashimotos and this last year came up IGG positive for gluten intolerance.
I stopped eating gluten and my heavy periods went away. I know that my antibodies are also a lot lower since quitting it too.
I have just read these postings and have to ask the obvious question.....
Who has had antibody testing down at diagnosis and recently?
I dont have Hashi's but do have Graves Disease and at diagnosis my antibodies were over 4000 (yes four thousand)....12 months after RAI and TT my antibodies were <30 ..basically in remission.
Sometimes people confuse 'wellness and feeling good' as the antibodies being in remission...this is not always the case.
I have researched and found that Selenium is 'supposed' to lower antibody levels in Hashi's and I say 'supposed' as there are yet no 100% foolproof studies to prove that.
Going by what I have researched for the last 3 years...the only way I know of antibodies going into remission is.....removal of the thyroid or ablation.
In March this year, I was tested for 'other' autoimmune diseases and it was found there were none but that doesnt mean to say that somwehere down the line, I wont get another autoimmune disease ...just as a Diabetic doesnt get rid of Diabetes..I believe we have antibodies for life regardless of what we eat or what supplements we do and do not take.
well I was referring to the anti-gliadin antibodies produced in those who have celiac disease. when someone has this disease, their body only produces the antibodies when they consume gluten. if they eat gluten free, the trigger for the antibodies is no longer present in their body, therefore the antibodies are no longer produced. this is why the stomach is able to eventually heal from the damage the antibodies caused after they remove gluten from their diet. that's what's unique about this disease - the antibodies are a response to something you consume (resulting in at attack on the small intestine) rather than to something you cannot easily get rid of (like your thyroid gland). hope that explains it!
Thats interesting...that IGg antibodies can be suppressed through NOT eating Wheat and/or Gluten.
Anti-gliadin, anti-endomysium, and anti-transglutaminase antibodys are the main antibodys in Celiac and these are what are tested for in Celiac Disease.
There are several steps that take place to generate an immune response and it takes time both for the positive reaction when gluten is present and to clear the antibodies when gluten is eliminated. There has been a great deal of discussion about how much and how long a challenge should be and there is no consensus.
The minimum is 2 slices of bread per day for 6 weeks to get an accurate test. There are basically four tests that can be performed to aid in diagnosing celiac disease. Notice that I say they will aid in diagnosing celiac disease. Immunology is fairly accurate but it is far from being an exact science. All of the lab tests, regardless of the type or source, are presented as aids to diagnosis. They should not be used alone as a basis for diagnosis but rather are intended to be considered in conjunction with the physical examination of the patient as well as the reported symptoms, etc. by a trained physician. There has been a great deal of confusion about what the tests are and I hope to alleviate some of the misunderstandings. There are many terms that we hear. tTG, IgA, IgG, ELISA, etc.
We all have, within our bodies, a family of closely related although not identical proteins which are capable of acting as antibodies. These are collectively referred to as immunoglobulins. Five major types of immunoglobulins are normally present in the human adult. They are IgG, IgA, IgM, IgE and IgD. Each of these is a shorthand way of writing immunoglobulin gamma G (or A or M, etc.) and they each perform a different function in our systems. IgG is the principal immunoglobulin in human serum. It is important in providing immunity in a developing fetus because it will pass across the placental barrier. IgA is the principal immunoglobulin in secretions from respiratory and intestinal mucosa. IgE is a gamma globulin produced by cells lining the intestinal and respiratory tracts. It produces the antibodies associated with most hypersensitivity (allergic) responses. It is associated with asthma, hay fever, etc. IgM is a globulin formed in almost every immune response in the early part of the reaction. IgD is a rare protein present in normal serum in a tiny amount. These designations refer to the type of protein that is carrying the antibody in question. Both IgG and IgA subtypes of anti-gliadin antibody are produced, hence we refer to them as IgG gliadin or IgA gliadin. Collectively they are anti-gliadin antibodies.
Yet there is only one antibody in Graves Disease and one antibody in Hashi's.
When I asked about antibody testing, I was asking about Graves and Hashi's antibodies......sorry for the confusion.
But from what I have researched...it seems that antibodies in Celiac Disease are actually 'proteins' that only arise as an 'allergy' to certain wheats, grains etc whereas Graves and Hashi's antibodies are a completely different type of antibody.
Deb said "Sometimes people confuse 'wellness and feeling good' as the antibodies being in remission...this is not always the case.
I have researched and found that Selenium is 'supposed' to lower antibody levels in Hashi's and I say 'supposed' as there are yet no 100% foolproof studies to prove that."
I have to totally agree that feeling good or well, is not the same as having the antibodies in remission. There are a lot of days during which I feel totally awesome, but over the past 2 yrs, the level of my antibodies and/or inflammation has not changed hardly at all and when they did change, they mostly went up.
I have Hashi's and I do take selenium; again, over a 2 yr period, I can honestly say that it has done nothing to lower my antibody count; however, it may help minimally with inflammation. A mircronutrient test showed that I was deficient in selenium; therefore, my thoughts are if you don't have an issue such as deficiency, it might not help a lot.
Same goes for gluten -- if you aren't allergic to it, what good will it do to eliminate it from your diet, since whole grains are generally considered to be an essential part of a healthy diet?
I have not given up gluten, as my doctor said "there's no need if you aren't allergic".
Gluten is not necessarily the source for your thyroid disease.........
Right, you definitely should not go gluten free unless you have been diagnosed with celiac disease or a wheat allergy, because for everyone else, it is an essential part of their diet. I would never have gone gluten free otherwise; it is one of the hardest things I've ever dealt with! I miss so much good food! The only connection I have heard between celiac and thyroid disease is that they are both autoimmune diseases and if you have one, you are more likely to have the other. So I think they are correlated, but that one does not cause the other.
Two interesting comments..."Gluten is not necessarily the source for your thyroid disease......... " and "So I think they are correlated, but that one does not cause the other.." I agree with both.
Quoting from the study that was cited in the article "...3.4% of patients with autoimmune thyroiditis had celiac disease...". Of course, since it's pretty much accepted that once you have one autoimmune disease, you are more likely to get another, this is no big surprise. We would also expect to see a higher incidence of people with both Hashi's and lupus, or Hashi's and pernicious anemia, for example. However, this is a 2000 study, so it might be WHY we all accept this...it might have been cutting edge research in 2000.
One point that I find interesting is that of that 3.4% with both, which came first? Did some of that 3.4% actually have Hashi's BEFORE they developed celiac? This question wasn't answered since it was beyond the scope of the study.
So, 3.4% of people with Hashi's also have celiac, but we might assume that some of them had Hashi's first. So, I guess that following the logic that gluten might be the source of your thyroid disease, you also have to say that your thyroid disease might be the source of your celiac??? I don't think either causes the other...just trying to follow the logic here.
Another interesting fact is that ONLY 3.4% of the people with Hashi's also had celiac. Yes, the incidence was higher than in the general population. But, this definitely begs the question of what causes the other 96.6% (plus, if we adjust for those who had Hashi's FIRST) of Hashi's? Less than 3.4% of us with Hashi's even have the potential of its source being gluten...not the greatest of odds. In other words, avoiding gluten can only be expected to help less than three people in a hundred with Hashi's.
This is so great to have this discussion and info from everyone on here. I learn such a lot from all of you.
I posted earlier on this thread that my endo was testing me for celiac, nearly a year after I was first diagnosed hypothyroid.. I just got the results, except she hasn't actually sent me any numbers, I'll have to chase those up.
Her letter says: normal haematinic screen, normal bone, liver, kidney profiles, random cortisol normal at 231, Normal FBC and lipid profile, TSH was 1.13, FT4 17.7.
Despite me asking different doctors since October to get FT3 numbers and them being promised this time, she still hasn't given me any !!! Last time my GP requested FT3 from the lab and they just didn't do it!! I've no idea what's happened this time, maybe the same again, I'll ask obviously.
From the tests she's quoted I don't know which one is the celiac one. Do any of you have any idea?
She told me she was going to test: Celiac screen, TPO Ab, IgA, TSH, FT4, FT3, Vit D deficiency and cortisol. I'm not sure from what she's reported whether she's done that or not!
The good news though, I think, is that she's agreed to me having a 3 month trial of T3 medication alongside the thyroxine.
She's suggested 10mcg a day of liothyronine alongside my 125mcg thyroxine. If any of you have any comments on that I'd be grateful to hear what you think.
The more I learn about this whole thyroid thing the less inclined I am to just trust what my doctors tell me!
I've just realised this is going way off topic for this thread. should I start a new one?
Yes, this HAS been an interesting discussion and it would appear that the general consensus is that eliminating gluten from the diet is beneficial ONLY to those who test positive for celiac -- makes sense to me!!
I agree that no research has proven that gluten causes Hashi's or is even connected. I do agree with the idea that if one has an autoimmune disease, it's quite likely they will get another; I, personally, have both Hashi's and pernicious anemia, my daughter has lupus and my son and his son both have type I diabetes. I'd say there's a good chance that any (or all) of them will eventually have another autoimmune; likewise, I may get another!!!
I'm with you, Deb -- get tired of hearing that I need to stop eating different things. If I eat something and it makes me ill or doesn't agree, I either stop eating it, or try smaller portions, since sometimes I get a bit "piggy" and over indulge!! LOL
I also avoid soy and don't use iodine. I do try not to eat raw broccoli, cabbage, etc too close to when I've taken my thyroid med, since cruciferous veggies prevent proper absorption of thyroid med; otherwise, I eat what I like.
Yes, yallolorry -- please start another thread with your issue. I have a lot to say about a doctor giving T3 med without testing for FT3 - but I'd rather not mix it in with this topic; both are too important and not related, so best not to be combined. Thanks.
I have suffered from IBS (tho never clinically confirmed) for 10 plus years. I know that eating too much wheat in one day or over a few days really buggers me up. It has gotten to the point in the past where it restricts what i do or where i go. I am very careful these days (after living with it for so long) but still get caught out at times.
Could this be related to my Hashi's? After reading this I'm beginning to wonder.....is it worth mentioning when I see the endo?
If you've noticed a definite connection between wheat and digestive symptoms, definitely mention this to your doctor. If you have autoimmune thyroid disease (Hashi's or Grave's), you are more likely than the general population to develop another autoimmune disease, like celiac. I think it would be worthwhile to have celiac antibody testing. Regardless of if you test positive or not, if wheat makes you feel ill, then you should probably avoid it. However, remember that before celiac antibody testing, you must not be gluten free. If you are, the test can return a false negative.
The consensus is that gluten does not cause Hashi's, nor does Hashi's cause celiac; however, as was also stated -- if you have one autoimmune disease, the likelihood of having/getting another is quite high. You have Hashi's, you could also have celiac.
When looking at it from that stand point, yes, it would be a good idea to talk to your doctor and see if you can get tested for celiac, which is an autoimmune disease characterized by allergy to gluten.
I'm not real familiar with IBS but I think it's actually more closely related to Crohn's Disease than to celiac... There are specific tests for both.
If all the tests prove negative, then it would be as Deb and I said in our posts: if something doesn't agree with us, we don't eat it. There are some things that tend to constipate me - I either avoid them or eat less of them.
If your doctor will test you for these things, it never hurts to rule them out, in order to know exactly what you are dealing with.
This is such an interesting discussion that I couldn't keep from joining in. I thought you might be interested in this little pearl that I ran across.
"Meanwhile, a study published at FASEBJ (Journal of the Federation of American Societies for Experimental Biology) indicates that addressing and avoiding vitamin D deficiency may suppress the immune response which leads to intestinal inflammation disorders as well as celiac disease (described in the study linked earlier in my post).
In short, this could mean that celiac disease may be induced by early exposure to a combination of gluten and strains of intestinal flora while also suffering from insufficient vitamin D in your diet.
To further corroborate this idea, we have two additional recent studies which indicate that 1) vitamin D assists in preserving the intestinal mucosal barrier and 2) that individuals born in the summer (and who thus experience their early months during the winter with less vitamin D providing sunlight) are more likely to develop celiac disease.
The first study can be found at the American Journal of Physiology here: Vitamin D Helps Maintain Intestinal Mucosal Barrier. The second study, a Swedish study, can be read at the Journal of Epidemiology and Community Health here (requires free registration to access): Children Born In The Summer Have Increased Risk of Celiac Disease."
Interesting point gimmel.
Although I am in the garden every weekend and have been for years (1 1/2 acres) and yet I still had a Vit. D deficiency.
So I have been taking Vit. D since then with Calcium as Vit. D combined with Calcium helps Thyroxin absorb properly.
Maybe the RAI depleted my Vit. D???
I stopped my Calcium/D3 for 3 months and felt like cr@p so went back on them.
My TSH is back up to over 5.0 at my 2 year anniversary but I put that down to major stress the last 6 months and now because of working fulltime...my body needs more thyroxin as FT3 and FT4 had dropped a bit.
I noticed last year that my TSH went up when I went to work but that was when I was 'tweaking' my meds....so there seems to be 'another pattern' there that I must remember.
I know its not the Pit. Gland as the FT3/FT4 hasnt sky rocketed like it did in March this year when tumour was found.
Another few weeks on 2nd increase and I should have levels normal again.
I feel tired but not achy so that good.
Wow! A lot of discussion here after my one little post. I'll try to get to most of it. First off, Gimel, those articles are fascinating. Thanks for sharing. One thing I've learned from all of this is that my D levels can easily drop, and I feel low when they do. From speaking to other Hashi friends, low D seems to be the trend.
I take D pills, but nothing works as well as a day in the sun. So am I exchanging skin cancer for a healthy stomach? LOL! Thanks so much for those articles.
I have not had a positive confirmation of Celiac. I had the IGA test and it was negative. No biopsy. However, I've had what my mom referred to as a 'sensitive stomach' for my entire life. At times, from youth to adulthood, my stomach was bloated and I looked pregnant.
I gave up gluten this February. At that time I was on 150 Synthroid and 10 Cytomel. Now, about once a month I am going hyper and forced to drop my meds. At first I thought I was crazy, but I also have FT4 and FT3 labwork to prove that I was hyper. I am now taking 112 Synthroid and 5 Cytomel. We will see in the next few months if I need to go down more.
My neck no longer swells. The swelling stopped about a month or two after quitting gluten. I no longer get the debilitating attacks that leave me on the couch for days at a time, popping Tylenol III pills.
No, I have not had a recent antibody test, but those are not always reliable, as antibodies can fluctuate. I've only had one test, last August - 221 TPO. However, I have learned that antibody numbers are not always indicative of how well you feel. I have many Hashi friends whose antibodies range from the hundreds to the thousands, and we have all felt just as lousy.
The proof is in the pudding. Antibody attacks stopped. Needing less hormone. FT4/FT3 numbers kept going up. I need no other proof that giving up gluten has worked for me.
Please note, also, that I said in my very first post, "I know the GF diet isn't for everyone" yet some members of this forum seem to think that I'm telling them what not to eat. If you don't want to try the GF diet, then don't. I think it would be selfish of me to have achieved an improved health and NOT share my story with other thyroid patients.
Yes, your one little post certainly has prompted a lot of discussion. I think that is great. Clearly there is a lot different opinions about a gluten free diet and how it relates to autoimmune system diseases such as the one that is near and dear to many forum members - Hashi's. I totally agree with an old definition of a scientist as one who proceeds to discover the facts, rather than try to prove a preconceived opinion. I think that is what we are all after here, is to discover facts that will benefit members.
You read a book about a supposed link between Celiac Disease/gluten intolerance and autoimmune system disorders. That book prompted you to voluntarily become a human guinea pig for all our possible benefit. LOL I admire that spirit. I've done a little experimenting myself, though not as demanding as trying to cut off my gluten intake.
It's good for all of us to stop once in a while and question some of the things we believe and things we do. From that type of reasoning I decided to read the book you previously promoted quite vigorously. I have to admit that I was skeptical and remain so. In the book I found errors that bothered me. I found an awful lot of hedging from the author about what he was promoting so heavily in the book. I found lots of open questions that would have to be addressed and answered satisfactorily before I could ever subscribe to the author's beliefs. As I did a lot of web surfing about some of the concepts, I ran across articles such as the above several, which made me stop and think, which came first the chicken or the egg? In other words, which are the potential causes and which are the potential effects among Vitamin D, gluten, and Hashi's? I think the jury is still out on all of this and we all need to continue to read, ask lots of questions and learn all we can about our common objective, which is hypothyroidism, of course.
My main concern is that in the interim we need to be vigilant in what we portray on the forum. Since there are always newcomers and lurkers who can easily misunderstand, I think it is very important that in every post we make it clear when something has not yet reached the level of proven science, or at least is somewhat acknowledged among the medical community, That is especially true when it comes to an experienced and active member such as yourself, with your credibility on the Forum.
I really hope that members help keep this thread going. I think we all learn from such an open discussion, and the Forum is the biggest potential beneficiary.
Thanks, Gimel. I will definitely read that article.
I've seen a lot of Hashi diets and cures out there, besides the GF and natural food diet. I've examined the Marshal Protocol and joined a forum for those patients to learn more about their treatment. I knew that based on how I feel with low D, I could not give up sunshine or my vitamin D treatments.
I also examined LDN, and have read that some auto-immune patients have benefited from that as well, but since I have asthma, I am not a candidate.
I also took iodine, but my goiter would swell every time I took it, so I finally had to give it up. All of these programs have worked for certain people, I'm sure, or they would not have continued with the protocol. For me, I did not see these options as viable.
Then I stumbled upon the aforementioned book that a Hashi friend I met on Facebook told me to read. I read the book and decided to give GF a try, since I'd actually tried it Spring '09 for just a few days when I thought I had Celiac. At the time my Hashi was undiagnosed and I had all of the Celiac stomach problems, plus low D and low Alk Phos, common in Celiac. I had dismissed thyroid disease because my clueless endos told me my TSH was fine, and I believed them.
Going GF wasn't hard for me last year, so I tried it again. I really felt so much better, otherwise I would not have stayed with the protocol this long. I am on my fourth endo because if I feel a doctor or a protocol is not working, I advocate for my health and move on. I would not go GF simply because it is the new Hashi fad.
It works for me. My new doctors, who practice Dr. K's methods, work for me. There are many Hashi patients in my doctors' office. We are all doing MUCH better. I'm not the sole Hashi patient who is doing well on this protocol. For me, the jury is not out on this one. For me, the choice is clear.
Like I've said before, if you don't want to go GF, then don't. This is your body. Do what's best for you. Just believe me when I say that the GF diet is working for me and other Hashis I know.
My ALP was always low whilst on anti-thyroid meds as it is a well known fact that ATDS cuase liver enzyemes to rise and this is monitored with Hyperthyroidism patients.
Its not only Hashis who suffer with low ALP..Graves people do too and not only associated with Celiac.
There are many reasons a low ALP is found.
Alkaline phosphatase ALP is an enzyme mainly synthesized in the liver and bone and to a lesser extent in the intestines and kidneys. During pregnancy the placenta becomes another source for LAP.
Normal level in adults is in the range of 20 to 140 IU/L (international units per liter).
Very high levels of ALP are seen in heptobilliary disorders, like hepatitis, fatty liver, cirrhosis, gallstones,and cancer. Levels are aslo high in bone diseases and during the healing of a bone fracture.
Infections, certain types of anemia and endocrine problems may raise ALP level. Medications that have an effect on the liver may also cause elevation in ALP level like some antibiotics, oral antidiabetics, birth control pills, analgecis, and antidepressants.
Low levels are commonly seen in patients with chronic diseases that result in malnutrition and low protien levels. Low levels are also seen in individuals with high Vitamine D level or low Vitamine C level as well as hypomagnesemia.
And I agree with gimmel ...quote:
My main concern is that in the interim we need to be vigilant in what we portray on the forum. Since there are always newcomers and lurkers who can easily misunderstand, I think it is very important that in every post we make it clear when something has not yet reached the level of proven science, or at least is somewhat acknowledged among the medical community,
There are many 'newbies' here and many who will read and take EVERY word as Gospel as they are so ill with their thyroid issues that they will try ANYTHING.
I used to see so many advertisements for weight loss, thyroid disorder 'cures', Cure Graves Disease etc.
This is where the line has to be drawn in what we post. We must try to be as accurate as possible...even though we do make mistakes.
And when it comes to severe thyroid issues ...I remember thinking one day...
"If I had the choice of winning Lotto or getting rid of graves, I would choose the 'latter'.
That was at the beginning when I was first diagnosed.
Obviously I am a lot wiser now and have researched a lot more and dont take any notice of those 'get well quick' advertisements.
I know that many people suffer low ALT for various reasons. I was simply stating why I had first thought I had Celiac, because of low ALT, low D and myriad stomach issues. At the time, as I'd previously stated, I was not thinking about thyroid disease when my ALT and D were low, as my endo had told me that my TSH was not high enough. But we all know about the big TSH myth. At that time, I did not know about the controversy over TSH ranges.
I am vigilant in what I portray on this forum. I am no longer dependent on pain killers and I'm less dependent on thyroid hormone. I no longer get antibody attacks. That is good news for me. Rather than celebrating my well-being, some members would rather persecute me for finding good health. Some of the members of this forum act as if I'm advocating leach treatment.
Once again, if you don't want to try the gluten-free diet, then don't.
Yes, I do think Deb's quote from gimel's post is the essence of the issue we take with this.
And, yes, I have noticed that you are now saying, "I know the GF diet isn't for everyone.", and thank you for that modification.
However, you are still ubiquitously recommending it, and we have so far seen no science to back it up whatsoever, either on a personal level or as it relates to the Hashi's population in general.
I have no doubts that you have improved your general health and gut health and are feeling much better, and congratulations on that. What I don't understand is why you think this improvement was due to any change in your thyroid condition, and not due to other issues (gut) that were much more likely improved on the g/f diet. You have no "before and after" antibody numbers to verify that your antibody "attacks" have stopped. Your neck no longer swells, but might this not be a result of reducing general inflammation in your body totally apart from Hashi's? We've talked about this before, but don't you think your "need" for thyroid meds has not been reduced, absorption has simply increased, which is consistent with improved gut health? Perhaps Hashi's was not the only issue you had going on...and perhaps someone without gut issues will not benefit at all. (Many members, myself included, have reported going g/f with absolutely no change in their thyroid condition.)
As g/f diet relates to the Hashi's population, we have seen no science once again. Where are the studies supporting a link? You say that MS's article is "MORE (emphasis mine) research connecting gluten to thryoid disease". I suggest that MS's article is more editorial than "evidence" and that "more" is a misnomer since I don't know which previously referenced body of research you are referring to. You have given us nothing.
Yes, I agree that we have a responsibility to deal in "proven science". Perhaps it's time to present some science to the rest of us so that we're more comfortable with it or give it a rest for a while. This has gone beyond "sharing" and become a litany.
Just the blood test which was negative. I had asked for the biopsy, but my gastro said my symptoms were not correlated with someone who had Celiac. He put it nicely, but basically said I'd have to be skinnier and my alk phos, which ranged 18-20, would have to be even lower. He also said Celiacs had diarrhea every day, which I didn't. I have met some Celiacs and now know that their symptoms can vary, unlike what this gastro told me. I am not about to go back on gluten and find another gastro to give me the biopsy. I feel better GF, so why would I go back? One thing he did say was that the GF diet was beneficial to everyone, and even he was GF, though he didn't have Celiac.
Now, don't anybody blow up over that comment. It was HIS opinion that everyone benefits from GF. I'm just the messenger here.
Ok here is my two cents for what it's worth. I have Hashi's and have been struggling for over a year and half now and still struggling. I use to love coming on this forum and getting the support from everyone. Unless you are living with thyroid disease no one really understands what you are going through and support means a lot. I have met a few people on here that I now consider very close friends. Now let me tell you why I have not been on here much lately. It seems that everytime I come looking for advice I get opinions that I do not agree with and this is one of them. If thyroid disease would be as simple as fixing with a gluten free diet or taking a million different vitamins and supplements than don't you think there would no longer be thyroid disease. I agree that doctors do not know everything and everyone is different but if this really was the fix that it is implied that it is don't you think they would push for it?
Tamara, I am so glad that you are feeling better since being on the GF diet but I see you are still on thyroid meds so it has not eliminated your need for thyroid meds. I really believe that you have just found your dose that works for you to keep your antibodies in "remission". I know you have lowered your meds but we all know that finding the right dose is an art. We are constantly adjusting meds, up and down on doses until we find the right combination. I am so glad that maybe you have found yours because after 18 months I still have not.
Now in regards to the GF diet. IF YOU DO NOT HAVE CELIAC, DON"T ELIMINATE IT!!! I can't emphasis that enough. One thing I have never shared with anyone on here is my severe allergies. I am suppose to take 9 allergy shots a week and that is just for environmental allergies. They can not do anything for my food allergies other than avoidance. If I told you everything I was allergic to just food wise you would fall on the floor. Through my life with allergies that has progresivly gotten worse over the years I have learned that if you elimiate something from your diet for a LONG period of time your body can and will build a resistance to it. When that happens should you try and reintroduce it you will have problems. So my point is if you don't have an allergy to it, or even an intolerace to it, don't cut it out. Gluten does have it's benefits and should not be eliminated for fear that it is the root cause of your thyroid problems.
Dani - you are saying what the many of us have been saying for some time. Absolutely, if someone is truly allergic to something, they should avoid it like the plague, but going g/f just for the sake of doing it is not going to do benefit you; and may actually do harm, as you stated.
Tamra, along with everyone else I congratulate you on the wonderful turn around in your health; I wish everyone could feel that well, so quickly; however, no one has been trying to persecute anyone, we've just been trying to get to the truth.
So far, we've seen no scientific evidence that gluten causes Hashimoto's, or that going g/f "cures" it (since we know there is no cure for it, only remission, possibly at some point); we also have not even seen scientific evidence that going g/f would be beneficial to one who is not allergic (celiac). It's fine that your doctor is g/f also, but saying that "the GF diet was beneficial to everyone", is totally wrong. He's welcome to his opinion, however, making an "across the board statement", such as that, makes me seriously doubt his ability as a doctor.
All of that said, I might point out that although I did NOT go g/f, I, too, lowered my med dosage some time ago; I was at one point up to 125 mcg levo and 10 mcg cytomel; I'm now at 88 mcg levo and 5 cytomel. My Hashi "attacks" are not as often, nor as severe as they were at one time, although my antibody count remains close to the same as it was at diagnosis. Does that mean I'll stay at that dosage? No....... Does any of that mean I'm less dependent on the med? No, it only means that something in my body changed and I don't need such a high dosage, at this time. Will I get back up to that dosage? Quite possibly at some point.
Dani brings up an excellent point: "Through my life with allergies that has progresivly gotten worse over the years I have learned that if you elimiate something from your diet for a LONG period of time your body can and will build a resistance to it. When that happens should you try and reintroduce it you will have problems. So my point is if you don't have an allergy to it, or even an intolerace to it, don't cut it out. Gluten does have it's benefits and should not be eliminated for fear that it is the root cause of your thyroid problems."
You do make yourself intolerant to foods when you remove them from your diet. If you binge, and I'm not talking about clearing out the bread aisle here, just a burger or a couple of pieces of pizza will do it), you feel it. The kneejerk response is, " See, I AM gluten intolerant...l ate gluten, and I feel yucky" Yep, as Dani said, you are gluten intolerant at that point...you have just made yourself intolerant. It's not an irreversible condition by any means, but if you decide to go back to gluten, you either have to reintroduce it slowly or suffer through a few symptoms for a few days.
Also, all g/f diets are not created equal. It really depends on what you replace that gluten with. If you replace a piece of whole grain bread with Mickey D's french fries, cooked in beef tallow, you may be doing yourself more harm than good.
I do want to point out that it IS possible that Tamra has celiac disease, even though her blood tests came back negative. That is why a biopsy is recommended because there are times it can show celiac despite negative blood tests. If she did have it, it would make sense that she feels better on the g/f diet, and that she was able to lower her thyroid med dose (I myself just lowered my dose because my stomach is apparently now better able to absorb the hormone after 9 months from my celiac diagnosis and going on the g/f diet). I personally would not have gone g/f in her case without insisting on and getting a positive biopsy, because as people have pointed out, foods with gluten are part of a healthy diet for those without celiac or a wheat allergy. Plus it is extremely difficult to find foods that have not had cross contamination with gluten (ex: Mickey D's french fries are not gluten free! :P ), not to mention expensive!!
I guess my point is this...it is proven that those with thyroid disease are more likely than the general population to have celiac disease, and it is very underdiagnosed. I could have avoided A LOT of misery, especially in my childhood and adolescence, if there had been more awareness in the medical community of this disease. The only reason I was diagnosed when I was is because I asked my doctor to test me for it. And the only reason I found out about it was because a friend mentioned it. So I don't think it's a bad thing that Tamra is bringing up the subject, because there does need to be more awareness of the disease, as long as it is made clear that you really need to get a diagnosis of celiac disease before going gluten free - that way you can be sure you're doing the right thing for your health.
Nobody is arguing the point that Tamara may have Celiac Disease. The point trying to be made here is that (from my opinion) she is pretty convinced that gluten is the root cause of her Hashi's and there is no medical proof of that. If people want to try it, that is their choice but lay out the facts with your advice. One important fact to mention is that gluten is not the cause of Celiac however it is not uncommon for anyone with an autoimmune disease to have another and Celiac Disease is an autoimmune disease.
Many people come to this site looking for support and help from fellow members of the thryoid community because they are desperate to feel better. Not everyone has knowledge in the medical field and some people believe everything they read. I have read MANY of Tamara's post regarding this and it sounds to me like she is sharing the "miracle cure" without puting out all the facts. My fear is that people who are desperate will jump on this because it sounds too good to be true and can or will possbly do themselves more harm.
"Disorders that may accompany gluten sensitivity include: short stature, selective IgA deficiency, dementia, Down syndrome, Williams syndrome, Addison's disease, type 1 diabetes, infertility, autoimmune thyroid disease, primary biliary cirrhosis and rheumatoid arthritis. Some researchers, such Dr. James Braly, feel that the toxic components in gluten contribute to the development of these other autoimmune diseases."
Another interesting article:
There are many more articles. If you google Dr. James Braly and gluten thyroid, you will come across many from him. He wrote the book, "Dangerous Grains". A book, which I have just purchased, so I'll share his research with those who are willing to listen after I read the book. I have already mentioned the other book in which I read linking gluten to thyroid disease, so I won't go on about that doctor again.
It seems there are those skeptics who refuse to believe me when I say that my thyroid swelling and antibody attacks stopped after eliminating gluten. And there are skeptics who, for some reason, think that I am willing to believe anything I read. I have researched other miracle thyroid cures which I felt were not right for me. This dietary change just so happened to be right for me.
I do not believe a doctor simply because he's published a book. I've published three of my own books. No biggie. I believe my body. This is how I got the Hashi diagnosis in the first place. Because I believed what my body was telling me despite myriad doctors who kept telling me I was fine based on my TSH. I'm an educated, empowered patient who just so happened to find what works for my Hashimoto's. My dietary changes, combined with my thyroid hormone, exercise routine and adrenal treatment has proven to make a huge difference in my life.
For those who have tried it and the dietary change did not suit you, then I completely understand why you continue to eat gluten. For me, eliminating that, plus some other tricky foods that were making me ill such as dairy, was a necessity.
I feel I need to take note on something that is seldom mentioned, not for the regulars here but for the 'lurkers' and newbies.
People without Celiac or gluten intolerance can sometimes feel ill from gluten along with any sweets as well. How? Digestive bacterial overgrowth and / or internal Candida. When severe (not very common) this is really an overall body infection, kind of like the symptoms of gluten intolerance. And it feeds on sweets , carbs, and gluten.
When gluten along with any sweets are eliminated or lessened from their diet temporarily (a few months to 6 months?) they can feel better. This is more common with people that are currently hypo or have been in the past - because at one time their digestive tract was severely slowed - from hypo. They may have GERD, heartburn,IBS, bloating, more aches and pains, and even brain fog. We usually assume these symptoms are just from hypo, but can really be symptoms developed from the slow digestive tract initially caused from being hypo. Its the 'what came first' question all over again.
When I was on a T4 med only for years, I had some of the above digestive issues, was more obvious with gluten foods, carbs and sweets. Eliminated those foods, took probiotics, got better, slowly re-introduced at a lesser level and added T3 that coincidentally helped speed up digestion in my case. A holistic doc put two and two together, told me to do the 'saliva test in a glass of water' every morning for a week to see if I had it.
This is rare I believe, but not as rare as one might assume. So I was not technically gluten intolerant, but it temporarily caused problems. But my antibodies were in the mid hundreds and still are today.
James Braly, MD is a California- and Virginia-licensed physician (California certification # C33868, expiration date 12/31/09; Virginia certification # 0101238700, expiration date 12/31 2009).
Dr. Braly is not associated with the Biogeneses Institute (formerly Nepsis) any longer.
Dr. Braly is no longer registered as a Physician. His licence expired in 31/12/2009.
* Braly graduated from St. Louis U. School Medicine, St. Louis, Missouri. He completed a one-year rotating-six internship at St. Vincent’s Medical Center of Richmond in Staten Island, New York, followed by six months of psychiatric residency at Harbor General Hospital in Torrance, CA. He resigned to pursue a three year apprenticeship with group psychotherapist, educator and author Dr. Nathaniel Branden.
* For many years Braly has practiced family medicine that includes strong emphasis on complementary & alternative medicine (CAM), clinical nutrition, clinical & laboratory research and patient education. During his clinical years in Encino & San Mateo, California Dr. Braly serviced medal winning Olympic athletes, triathletes and many Hollywood movie & TV personalities. Until recently he was involved in research, development and clinical application of diet, oral, & intravenous nutrition, and herbal remedies in the management of alcoholism, chemical dependency, co-morbidities of addiction, chronic abstinence symptoms, and the prevention of relapse.
* Braly is best-selling author, medical writer & medical editor. His first published book was the best-selling Dr. Braly’s Food Allergy and Nutrition Revolution (New York Times, 1985 and Keats Publishing, 1994). Other books include: Food Allergy Relief (Keats Publishing, 2000), Dangerous Grains (Avery/Penguin Book Group, 2002), The H Factor (Piatkus Publishing-UK, 2003) & H Factor Solution (Basic Health Publications-USA, 2003), foreword & chapter dealing with amino acid/nutrient precursor therapies for addiction for Staying Clean and Sober (Woodland Publishing, 2005), Hidden Food Allergies (Piatkus Publishing, London, 2005), and most recently How to Quit (Little-Brown Group Books, London, Sept 2008).
* Braly researched, edited, & wrote professional newsletters for US & European physicians, including "Food Allergy Update," issued monthly to over 20,000 American physicians.
* Braly practiced medicine in Newport Beach, Encino, Van Nuys & San Mateo, California, specializing in family medicine, alternative & complementary medicine, sports nutrition, food allergy, celiac disease, metabolic weight loss, medical writing and editing, and laboratory science. During this time, Braly founded Immuno-Nutritional Clinical Laboratory (INCL), a federal & state licensed clinical lab, servicing his patients and nationwide those of other physicians. Braly served as medical director, researcher & newsletter medical writer/editor at INCL where he developed protocols for IgG-mediated, delayed-onset (hidden) food sensitivity lab tests. Later, as consultant at Immuno Laboratories in Florida (see below), he assisted in research & development of the highly sensitive & specific tTG lab test (IgA anti-transglutaminase assay) for celiac disease.
* From 1994 to 2004 Braly pursued a full-time career of writing, editing, lecturing, consulting, and research. From 1994 to 2000, he served as medical director, consultant, researcher, medical newsletter editor & lecturer for Immuno Labs, Fort Lauderdale, Florida. Between 2000 and 2003, he was medical consultant, writer and lecturer for YorkTest Laboratories, York, England.
* In 2004, he was medical consultant, researcher, lecturer and educator-trainer, specializing in IV and oral nutrient therapy for addiction and addiction-related co-occurring disorders. In 2005, he joined Virginia-based Bridging the Gaps (BTG), a residential integrative addiction treatment center, as full-time attending physician, director of clinical nutrition and client education. While there, Braly performed routine H & P's, and lab test analyses, while developing and introducing the following new services: in-patient IV-oral nutrient therapy for rapid reversal of abstinence symptoms, dietary menus & guidelines, essential fatty acid testing in conjunction with a fish-fish oil supplementation program, gluten sensitivity testing with reflex celiac disease screening, science-based alternative therapies for depression & anxiety, stress reduction-adrenal support therapy, liver protective & regenerative therapy for clients with hepatitis C & alcohol liver disease, and drug-free sleep therapy protocols. In June 2007 Braly was hired as director of clinical nutrition and attending physician at Alta Mira Recovery Center, a start-up 48-bed in-patient, multi-modality, and integrative addiction recovery facility in Sausalito, California, the purpose of which was to replicate the services and successes achieved in Virginia.
* Braly is currently medical director of Weller Health, LLC, a stem cell research company in Orange County, CA and associate medical director at Nepsis Institute, a stem cell therapy center in Baja, Mexico.
* Braly is featured lecturer at medical and professional symposiums. He was a featured lecturer at the American College for Advancement of Medicine (ACAM) symposium in Las Vegas & the Food for the Brain International Symposium in London, England, where he presented "Gluten Sensitivity, Celiac Disease, and Chronic Brain Syndromes” as well as “IV and Oral Nutrient Therapy for Addiction.” He was also featured speaker at the Council on Alcohol & Drug Abuse and associates in Corpus Christi, Texas and the CARA alternative medicine for addiction symposium “Beyond Talk Therapy” in Sacramento (Oct 2007), where he presented "Integrative Therapy for Addiction” and “IV and Oral Nutrient Therapy for Addiction.”
* Braly is an experienced product researcher & formulator. As executive director of research & development for Abbott Scientific Products Division Dr. Braly assisted in the developing of the hepatitis B antibody vaccine. Later he introduced to American health professionals & consumers the cholesterol-reducing Ayurvedic herbal extracts gum guggul and turmeric, as well as the many health benefits of the bioflavonoid quercetin and the amino acid L-glutamine.
* Dr. Braly contributed to research and development of the highly sensitive & specific tTG lab test (IgA anti-transglutaminase assay) for celiac disease at Immuno Labs in Ft. Lauderdale, Fl.
* Between 2003 and 2008, Braly researched, developed & clinical applied intravenous-oral nutrient formulations for the rapid reversal of chronic abstinence symptoms and the prevention of alcohol and drug relapse.
These two links set off alarm bells regarding the motivation of author Elaine Moore.
Again, I have no problem with your strong belief in benefits being received from going gluten free. I look forward to following your continuing experience. Let's just continue to present facts, and discuss opinions and ideas thoroughly, and we'll all benefit.
SmilerDeb, Other than the fact that his license expired, Braly has some good credentials. I have not read his book, but, like I said, after I read it, I will share what I've learned.
Look, I don't buy everything out there, either, but GF and eliminating other food issues worked for me. I see a holistic doc who's been wanting me to change to dessicated thyroid hormone. I have read countless websites and testimonials citing how superior dessicated is to synthetic. However, so far, my synthetic T3/T4 combo is working, so I see no reason to switch at this point. At some point down the road, if I feel I'm having health issues associated with my thyroid hormone, then I will try dessicated, but for now, no website will persuade me to do what I'm not entirely convinced is best for my body.
I have many Hashi friends, who just so happen to be on other forums, who are doing fabulous on the GF diet. Maybe I'll be able to get some to chime in here. Mac, who has Plummer's, is doing very well on a blood type diet, which is also a GF diet.
My holistic doc sees many Hashi and diabetes patients. I speak to them in the office (I go to him twice a week). They, like me, are all noticing amazing results.
I have presented facts here pertaining to my antibody attacks, shrunken goiter and reduced hormone, but those facts are dismissed. I feel like being persecuted for being an out of the box thinker, but I remember at one point those who opposed treating the TSH were out of the box loons as well.
Lazymoose, you've presented an excellent case. My endo knows I'm GF and he supports if because he advocates a high protein/veggie diet. He also believes that I am needing less hormone because my gut is healing without the gluten and able to process the hormone better. He mentioned leaky gut to me yesterday when I saw him. He did not buy the theory that a gluten intolerance caused my Hashi, but he is being open-minded about my progress and following it with interest, especially since he noted my shrunken goiter.
One final note, my hubby is coming home after a very long business trip. I will be offline as we spend time together, so you will get a break from my 'litany' for a while.
Hi All, It is nice to see such lively discussion. I have not been tested but gluten has been a problem for me. There are studies that say that if you live in a city, you have 50% better chance that you could be hit by a bus than if you lived in the country. So if that is true, that would mean that you could never get hit by a bus if you were on the bus and never got off of it, or does it also mean that if you got off the bus in the country you have less than 50% chance of getting hit since you are not in the city?
Dos that mean I should never ride the bus, or ride the bus more?
I do not have antibodies, so I will not speak to that, but I have suffered with Hyperthyroidism for over 7 years. As many here know, a large part of my road to health has been a conscious decision to eliminate things form my diet, based on proper nutrition, and with the help of my doctor. One of the things I eliminated is gluten. This I did at a time where I could measure how my body reacted to it, or not so I could decide if this was something I was better off not having in my diet. Soy, for example is devastating to me if I eat any soy product. So I eliminated soy and my thyroid does not swell up like it will if I eat soy. I avoid it. I have a similar reaction to gluten, but it takes more gluten to cause me problems, if I leave gluten in my diet, I feel sluggish and I itch (took me a while to determine that it was the gluten not the Soy that caused itching mostly on hands and feet) So I have tried removing gluten for weeks and adding gluten for weeks at a time, and I “feel” better without it. Very good point made by LazyMoose about the gluten sugar connection also. I limit my sugar intake and “feel better”, but that is just my experience.
So as I ride the bus every day, I ponder how better I feel not eating gluten. As Tamara said, "I know the GF diet isn't for everyone" true, for me GF is good. I just eat what agrees with me and if it doesn’t, I remove it from my diet like Deb said.
Thanks Mac, and I'm glad to hear you found what does and doesn't work for you. Sugar has been a no no for me. I'm cutting back as I see the affect, not so much on my thyroid swelling, but on my adrenals and stomach bloating. Yeast as well. I've given up artificial sweeteners such as Splenda because of the affects on the adrenal glands. I think adrenal health is an important, often times ignored, part of treating Hashi and the entire body. I've come to fully appreciate the biblical adage: Your body is a temple.
Stacy posted her experiences with eliminating gluten on another thread. She is also avoiding foods that trigger TH2 attacks since discovering she is TH2 dominant. I think everyone should read to see how much her health has improved.
I think both of you are missing the point here. No one doubts that some people feel better on a g/f diet. I totally support anything that makes you feel better. And, I think a g/f diet has many benefits for people with gut issues, both Tamra and Mac included.
That said, there has been no evidence (study) presented that demonstrates that a g/f diet benefits THYROID disease in any way, or benefits anyone who does not have gut issues. If we are going to imply that a g/f diet has a curative effect, or even an ameliorative effect, on thyroid disease to the EXTENT that it has been implied on this forum, then I think it's important to back it up with some science.
You know, the sad part of this is that I do think it's appropriate to suggest trying a g/f diet to a selective group of people. However, the g/f diet has been so overexposed on this forum that in all good conscience, I cannot recommend it and add to the volume. In repeating it so often, we are creating a truth that does not exist. Here’s a quote from another g/f thread currently going: “I've only started the diet recently so haven't noticed specific improvement yet, but everything I've read and heard is that it's the only way to actually slow/stop Hashi's”. Not only does the content of this bother me, but the way it’s stated, as though the concept were totally accepted medical practice, scares the he// out of me. If anyone cares to look at the thread, here’s the link:
Other issues are also starting to take on a similarly “universal” applicability. I’m not being specific here because I don’t want to dilute this thread with yet another controversial issue. Discriminate recommendation is the key.
Tamra, I have read the book that you recommended as the "best thyroid book you ever read", which is the basis for all this. It was a waste of a few bucks (no big deal), a waste of valuable reading time, which I treasure, and, in my opinion, nothing but an infomercial. The guy is obviously pitching his protocol, supporting the network of practitioners around the country that he has trained, and promoting his products. And I’m sure all of this comes with a very dear price tag. I also doubt it’s covered by insurance (except Cadillac plans, perhaps). I know my insurance does not cover chiropractic or non-prescription remedies.
I think it’s appropriate to recommend g/f diet to SOME people on a very individual basis, i.e. in a thread to an individual poster who has exhausted conventional medical approaches and still does not feel well (with the caveat that it is unproven, but has helped “some people”). It is not appropriate to recommend it to people who have yet to be diagnosed, people just diagnosed, people in the process of initial meds adjustments or people who are hyper, a much more immediately dangerous condition than hypo (even K does NOT recommend this for Graves’). At worst, people might shun medical treatment.
I agree with Mac that this is a lively and interesting discussion, and I think it will be a valuable thread to which we can refer members to expose them to more than one side of the issue…I also think it’s long overdue.
I think it’s appropriate to recommend g/f diet to SOME people on a very individual basis, i.e. in a thread to an individual poster who has exhausted conventional medical approaches and still does not feel well (with the caveat that it is unproven, but has helped “some people”). It is not appropriate to recommend it to people who have yet to be diagnosed, people just diagnosed, people in the process of initial meds adjustments or people who are hyper, a much more immediately dangerous condition than hypo (even K does NOT recommend this for Graves’). At worst, people might shun medical treatment.
I totally agree with that statement made by Goolarra.
There are so many Graves People out there that are looking for wellness without having to go through the fear of RAI and TT.
Recommending a G/F diet would be grossly misleading.
"As many here know, a large part of my road to health has been a conscious decision to eliminate things form my diet, based on proper nutrition, and with the help of my doctor. One of the things I eliminated is gluten"
"if I leave gluten in my diet, I feel sluggish and I itch (took me a while to determine that it was the gluten not the Soy that caused itching mostly on hands and feet) "
Just to clarify for anyone reading my particular post, it takes an immense amount of work to be as healthy as I now am, and I am on a very specific protocol that includes Lab Work Doctors, Naturopathic Doctors, Endocrinologists, Google, Bus Rides, Tamara's advice, Goolarra's advice, Deb's and others advice , knowledge of family history, etc..
Gluten is but one piece of the puzzle, and I don't believe I addressed gluten and thyroid in the same sentence, or implied that some particular GF diet cured my thyroid disease. For those of us that still have a thyroid, I would imagine if gluten does affect antibodies, or the thyroid directly, the experience would be different to those who no longer have thyroids. All of us here have different circumstances with our thyroid disease. And many of us have other conditions related and not related to Thyroid disease or bus fumes. That is what makes this forum so valuable and interesting. No single person here has all the answers for anyone but themselves. This discussion clearly shows that we all care about others that visit here to this forum, and we all want those who seek our advice to get a clear picture of facts and personal experience.
I will say that I believe the body needs to be treated as a whole, and in order to achieve full wellness many things must be considered. Obviously. It took/takes a great deal of work to achieve the level of overall health that I have achieved. To my knowledge there is no magic pill, procedure or diet that is going to fix you. Educate yourself and make your decisions based on facts and science.
So to clarify, I "feel" better without gluten. That does not mean if you stop eating gluten your thyroid disease will vanish. (in my experience)
I'll say that I, too, read Dr K's book, since it was being touted as the best ever, and I agree that it was a waste of $ (no biggy) and time, which is a biggy for me.
It was stated in the book, and has been stated on this forum too many times to count, that " ALL HASHI'S *MUST* GIVE UP GLUTEN". I totally agree with goolarra - there certainly are instances in which giving up gluten may be beneficial; however, in all honesty, I would not be able to recommend it under most circumstances.
There is certainly nothing wrong with "thinking outside the box", that's how a lot of good discoveries are made; but when it comes to a horrible disease like any autoimmune, that type of thinking should only take place, in conjunction with the proper medical care.
We all know that medical care is expensive and for many who don't have insurance and can't afford to see a doctor, I think this "outside the box" thinking might prevent some people from getting the proper care for their illness. When one is totally desperate to get well, they will often try anything that sounds good and in the long run, end up spending a lot more than if they'd gone to the doctor initially and gotten the proper treatment. From what I've experienced, thyroid meds are quite inexpensive.
Mac said: "For those of us that still have a thyroid, I would imagine if gluten does affect antibodies, or the thyroid directly, the experience would be different to those who no longer have thyroids. All of us here have different circumstances with our thyroid disease. And many of us have other conditions related and not related to Thyroid disease or bus fumes."
Those statements are SO true. We are all different and that's why making such "across the board" statements, as "All Hashi's must give up gluten" so scary!!
Thanks for bringing up people who suffer other thyroid issues-like being born without one! Nothing there to be attacked by the antibodies that can flare for "WHATEVER REASON" However "limiting" gluten (as Tamara states) in my daughter's diet, which we were already doing per our doctor's (MD) request, and improving fungal intestinal issues (as Lazy Moose brought up) as we were also already doing per our doctors request, with limits on sugar, peanuts, milk and a prescription anti-fungal medication for 6 months. Both of these changes have no doubt made a huge difference in my daughter's overall health- by enabeling her intestines to better utilize/absorb her thyroid hormone replacement! I was able to lower her meds by 1/2 a grain and her belly doesn't look like she's 5 months pregnant anylonger and her unnatural hunger and cravings are finally gone. If it is true that 20% of the conversion process happens in the gut and 20% in the actual thyroid gland, (and since she was already in the hole here as she has no gland)- then cleaning up the intestines makes logical since to me and has made a definite difference. And while I was at it, since most of her conversion process is happening in the liver - I began cleaning that up too! We focus on organic and non toxic now and she takes Burbar drops prescribed from a naturalpath. I think it is true that we must not toute anything as a cure for all our thyroid ills- but instead, as a posibility for help or improvement. After all, this IS "Med" "Help" isn't it? So I say anything that HELPS anyones MEDS to work better or makes a difference to an individual's health should be shared in a way as to say, "this is my situation and this is what has helped me- Now it may or may not help you, so it's up to you to try it or not". I for one appreciate all the sharing that Tamra has done (Texans are just like that!). McMillan was correct when he said it is about "the Whole body", as thyroid issues do effect the function of just about everything in our individual "temples". Anything that anyone discovers as beneficial or helpful in feeling better can be of value to someone, and at the same time of absolutly no value to someone else. I think we need to value each other's opinions, experiences and passion to wellness more and be careful as not to stiffle or condem or gang up on one another. We are a community, so lets act like one people and not become like those other thyroid sites that I always feel so uncomfortable on! Love you all!
I dont see it as a 'ganging up'......I see it as a discussion that is very important and everyone puts their 'input' into it.
If I turned round and told everyone that was considering RAI that they would NOT go Hypo afterwards and would live a lovely beautiful life, without having to get their medication levels right...and that ONE PILL A DAY WILL FIX ALL as Doctors put it.....I would be blasted by other members here as it is totally untrue.
In Diabetes ...if a diabetic with thyroid issues is put on a G/F diet, they are at high risk of Iscaemic Colitis occuring where there is not 'fibre' in the bowel to make it function properly and ulceration occurs.
If left untreated,,,,the bowel is then partially removed where the infected intestine is.
These are things that should be addressed or looked at.
G/F may be good for some but is not always good for everyone
.A low GI die tand exersise is better for a Diabetic than a G/F diet.
Also a G/F diet is an an absolute no-no for a Graves sufferer as stated by most Doctors.
In my work field, I have seen so many people do the G/F diet and their body is deprived of the grains their bodies need and fibre.And I have seen many cases of Ischaemic Colitis where the intestines and bowel needs these important grains and fibre and when deprived of them, the ulceration occurs.
By all means...tell other members what YOU have found to be helpful but not a QUICK FIX for all because basically ....what is good for one person...can make another critically ill.
This is what has to be stipulated.
Our personal experiences, what we have researched and what we have found.
Not inviting "so called Doctors" here on the site to abuse members that do not agree with that form of treatment.
Because that is what I got by not agreeing to a certain posting a while back.
Personally I am rapt that Tamra has found relief on a G/F diet and anyone else who has but also remember that what you deprive your body from...may have to be supplemented in another form.
Tamra does not have Celiac but finds relief with a G/F diet just as I am not lactose intolerant but find skinny milk better than full cream milk......And Tamra has worked hard on her path to wellness.
But a path to wellness for one , may be the opposite for another.
This is the message these postings are making....there is no attack whatsover on anyones part here or 'ganging up.'
I think you missed some of the points in this thread. No one is trying "to stiffle (sic) or condem (sic) or gang up on one another".
As has been stated all through the thread by all of us -- we are all different and there is no one treatment that's beneficial to everyone. As I stated in a previous post in this thread, and Deb just confirmed, whole grains are generally considered to be an important part of a healthy diet; and there are those who absolutely need those grains.
Therefore, when we have someone who insists that "all Hashi's must be g/f" or that going g/f "cures" Hashi's, we have to bring up the red flag, because we know we are all different and we know there is no cure for Hashi's. Yes, the antibodies can go into remission, but that doesn't mean you no longer have the disease.
For anyone who has gone g/f and had good luck with it -- I'm absolutely thrilled, but as Deb pointed out, for some, it could end up disastrously.
It's wonderful that your daughter has had such good luck by going g/f. *I* have found that taking selenium helps keep down the choking feeling; magnesium helps with the joint/muscle aches/pains, etc -- I tell people who ask specifically if there's something they can do for those things, but I also make sure I qualify that with "it works for me, but does nothing for some people"......and most importantly, I don't feel the need to get that message into every post I make.
The point of this thread has been that gluten intolerance/allergy doesn't "cause" Hashi's, nor will going g/f "cure" it; it's not for everyone and to insist that it is, is foolhardy.
I think you bring up a couple of very interesting points. Cleaning up the intestine (IF it NEEDS cleaning up) will help absorption of meds. So, lowering intake of meds is to be expected since less is being excreted before ever hitting the bloodstream. Makes perfect sense to me, too. I've argued this point several times. It's also a bit of a moot point..."need" or "dependence" has not changed, merely "intake". However, what's really interesting in your daughter's case is that since she has neither a thyroid nor antibodies, it's obvious that this has nothing to do with thyroid health (in her case), but everything to do with gut health and metabolism...wonder if we might also extrapolate that to those who do have a thyroid and antibodies. Don't know...it hasn't been studied.
I also agree with your caveat: "this is my situation and this is what has helped me- Now it may or may not help you, so it's up to you to try it or not". However, I would also add "it has not been demonstrated in any scientific study, and we have no idea what percentage of the population might be helped".
Sorry to have left your daughter out of this discussion to some extent, but the discussion does relate to the connection between gluten and autoimmune diseases, especially Hashi's and Graves'...no slight intended.
I think it's obvious that this discussion is long overdue and that a lot of frustration has been building over the last several months. I think the discussion is healthy, and not something to be discouraged in any way. No one is being persecuted or ganged up on. We are all just finally having a chance to express our opinions. I think this will be a very valuable thread to have available to reference for members to read a balanced discussion on the subject. I'm sorry if this discussion makes you unfomfortable. I can not speak to what happens on other forums as this is the one and only I have ever participated in. So, I guess you can say that thyroid is my "passion". I think we generally do a very good job here at MH...good information...good support. I'd like to see it stay that way. I think we have to be very careful of everything we say...distinguish fact from opinion.
We obviously all care about what's being promulgated ont his forum...we all spend a lot of time on it. Insisting on its quality should not be confused with "persecution' or "ganging up".
It 's a very long thread. Maybe it's time to give it a rest. I still think you guys/gals and Med Help are the best even if I don't like this thread. LOL Keep up the good work as you all do a great job!
It's a long thread, but it's a very complex subject. I've seen longer...some with a very one-sided view of this very same subject. I think it's time to clear the air. Several of us have unanswered questions still (I know I have tons), and it's time to address them. I've suggested "giving it a rest" too, but that's a two-sided proposition. Cite proof, or give it up. I will be more than happy to endorse this if I ever see science supporting it. However, as of yet, I have seen NOTHING. Opinion, opinion and more opinion...which I do not share. Testimonials..which I seldom give any credence. I am one of the ones who had a bad experience with g/f. I have seen no concessions so far, just accusations of "persecution" suggesting that all those commenting on this thread are simply "playground bullies" and have no valid opinion.
It's not the info. All very good points, but more the "tone" of it all. I like Tamra very much and I don't want to see her so offended that she never comes back to our forum as this would be a great loss for our community and to those who enjoy her postings. She has great insite and information about alot of things (and not just g.f.) and such a caring heart. Many seem to mistake that as her pushing some sort of personal agenda, yet I see it as wanting to share what has helped her in an attempt to help others. Yes, you are right that we need to be very careful to preface what we say as "opinion" and not fact, or with "no scientific evidence,"( which is lacking in the world of thyroid), but sometimes we get so "fired up" and excited when we feel that there has been some sort of a break through/improvement to our symptoms that we just forget to do this. I see this thread as a healthy reminder to us all to do this in all areas of advice (gluten free, vitamins, diet, blood levels, meds. literature etc..). In doing so, hopefully we will keep frustrations from building over time with those who have differing thoughts on any one subject. Oh ,and by the way- just for the record - I do not see any of you as "bullies or persecuters, or victims" just passionet "thyroidians" who are valued advisors and caring friends. Sorry if I offended anyone!
Neither do we want to see anyone leave the forum. Yes, I'm sure Tamra has some very good insight into things other than g/f. The problem is that's all we've been hearing from her for quite some time now and that's not all there is to treating thyroid issues; in fact, as we've pretty much shown, it really has nothing to do with thyroid health, since there's no scientific research that actually links gluten and Hashimoto's; other than the fact that both Hashi's and celiac are autoimmune and when one has an autoimmune, it's very likely they will get another.
Again, there has been no persecution or "ganging up"; just a desire to clear the air; it needed to be done.
I think one thing we all need to keep in mind here is that you can disagree without being disagreeable. I really believe that has been the intent of all the many posts. I think that is why it took so long before the disagreement even came out into the open.
There is clearly a lot about "the book" to disagree with. There are far too many errors and conclusions that seem to be supported only by anecdotal evidence, predominantly from the type of doctors that don't normally deal with thyroid problems. This leaves many open questions about the validity of the treatment protocols and even the basic motivation behind all of it.
Tamra has been an important contributor to this Forum for a long time. No one is questioning that she is feeling better as a result of going gluten free and other changes she has made in her diet and lifestyle. I think we are all interested in her experience longer term and hope that we continue to be updated regularly. Our questions are all about the mechanisms that have created this improvement.
There are several ways that have been identified that could cause the improvement noticed by Tamra, other than the one promoted in "the book", which is that gluten intolerance causes the immune system to produce antibodies that also attack the thyroid tissue, because it is so similar to the molecular structure of gluten. This basic assumption of the book is so central to the argument that it needs to be thoroughly and scientifically validated. If it is indeed the basic cause of Hashi's, then shouldn't we expect that going gluten free would result in elimination of thyroid antibodies, which should then reflect in test results? This is some of the type of data that would be required as validation.
It's clear that Tamra did not intend for her posts to be interpreted as being unqualified recommendations based on scientifically valid data. At times it was stated that going gluten free was not for everyone. Unfortunately, I think that the enthusiasm from her improvement resulted in many posts that could have been easily misinterpreted as such by new members and others. Clearly that is something we all need to guard against as we hopefully continue to be open to new ideas, but at the same time we have to carefully evaluate them for the ultimate benefit of all members.
gimel, Well said, Thank you for that post. I have not read "The Book" and don't have Hashis, so I found the brief explanation you made (simplified I am sure) of how gluten is linked to thyroid disease in the book, helps me to understand that part of the augment better.
I also hope the group continues to get good heath updates form Tamara and others like myself who have made major diet and life style changes and achieved success.
In my case I have scientific data, Lab results and hair analysis, thyroid ultrasounds of before and after I made these changes. In my post above I mentioned that I am following a specific protocol, this is not the same protocol that is mentions in "the book" but there may be some part of my protocol that is similar.
I learn a great deal on forums, this one included...thank you.
There have been a few assumptions stated in this thread which should be corrected. First of all, I am not advocating eliminating any healthy food, including gluten, if one doesn't need to. With that stated, a g/f diet does not have to be grain/free, nor devoid of fiber. A number of cultures use rice or corn, not wheat, as a staple. Amaranth, arrowroot, coconut flour (which is low carb with 61% fiber), millet, quinoa, and tapioca are a few others. By the way, any wheat raises my diabetic & hypothyroid husband's blood sugar, but he eats it anyway, but not often at home anymore because he keeps his a1c down (from 13+ to under 7) just with diet & exercise.
Another assumption, which may have some truth to it, but is completely contrary to standard food allergy (elimination) testing, "You do make yourself intolerant to foods when you remove them from your diet." Several of our doctors over the years have recommended the opposite...that is removing the offending food(s) for several years, then reintroducing, which has worked well in our family.
As it has been stated many times on this thread, having any autoimmune disease makes one more vulnerable to other sensitivities. Hashimoto's can be like that for some people. His thyroid crashed over 50 years ago after a serious case of mono. Mine, much more recent but complicated with Lupus and Lymes. My husband and I both can tolerate very few meds any more. However, we do not try to reintroduce any drug for which we have had a bad reaction to.
So, in spite of being being fairly universally vulnerable, we each need to find what works best for us as an individual. Peace, ggma1000
Barb's quote: "Not inviting "so called Doctors" here on the site to abuse members that do not agree with that form of treatment.
Because that is what I got by not agreeing to a certain posting a while back."
I did not invite him, and yes, he is a doctor. I asked this doctor if I could repost one of his transcripts on this forum. He agreed as long as I provided him with the link. I did not know he was going to come to this forum and post. He is not my doctor, but he does treat some of my friends, including Stacy from this forum, who has had great results.
There is a hostility on this forum by certain members when I share my gluten-free success. I am slammed for my unconventional and 'drastic' dietary plan. Not only have I seen significant health improvements in eliminating gluten, but by avoiding cow milk, soy, corn and processed/fried foods as well. My diet consists of a lot of lean meats, fresh fruits and veggies. Also, I lift weights ad do light cardio (so as not to overstress the adrenals). My approach would be considered more holistic or crazy to some. I see it as common sense.
And, no, I do not eliminate grains. For Barb to assume that is grossly misleading to the rest of the members on this forum. I still eat non-glutenous grains. I believe that Hashimoto's is an auto-immune disease that requires more management than than just popping pills. If it were so easy!
And because I decide to bypass the funnel cake stand and enjoy good health, I do feel I'm persecuted on this site. Sorry for being so blunt, but I've dished in more of my share of rude/blunt comments here.
Some of the five star generals consistently remind me of an obligation to newer forum members. The way you see it is that I am pointing newer members toward a drastic lifestyle change for no reason. So at what point do we need a reason to eat and live healthy? I've reached my breaking point with this disease. I refuse to throw up my hands and let the pharmacies take care of me.
Well, off to spend the day swimming and soaking up vitamin D with my little one.
Sorry I was hard at work a few hours ago -- I do hope you had a wonderful time with your little one, swimming and soaking up the vitamin D; unfortunately, some of us don't have the luxury of spending the day swimming OR soaking up the vitamin D no matter how much time we spend in the sun.......
I'd venture to say that my 10 hr work day kept me in the sun much longer than the time you spent swimming and having fun -- unfortunately, spending time in the sun, doesn't help me much and I still have to supplement.
That said, I'll thank you to get your facts straight......... *I* was not the one who made the comment you attributed to me - "Not inviting "so called Doctors" here on the site to abuse members that do not agree with that form of treatment.
Because that is what I got by not agreeing to a certain posting a while back." I remember that incident well; I wasn't the one attacked at that time; if I had been I would have said the same thing.
The hostility seems to be coming more from you, than any of the rest of us; we had a discussion that you chose to stay out of for nearly 10 days, then all of a sudden you come back in and attack me.......
You are attributing hostility to me, that I didn't portray in the beginning; however, you are doing a good job of bringing it out. No, I didn't go g/f and most likely I won't ever because my doctor told me not to.......
You said: "And, no, I do not eliminate grains. For Barb to assume that is grossly misleading to the rest of the members on this forum. I still eat non-glutenous grains. I believe that Hashimoto's is an auto-immune disease that requires more management than than just popping pills. If it were so easy!"
Sorry to burst your bubble, but I have made no "assumptions" in regards to your diet --- I don't really know what your diet is, except that you have made it perfectly clear that you don't eat gluten and your "doctor" says that anyone with Hashi's should not eat it. Sorry, my doctor says I should not eliminate it -- I'll trust my doctor over yours any day.......
You are absolutely right that Hashi's is autoimmune; no one is arguing that point, nor are we saying that "popping pills" is the only way to go...... there are things that we can do to help ease our symptoms; the point here is that it's not a "one size fits all"...........telling people that if they go g/f, they can reduce or get off thyroid med is so very misleading....
In addition to that, I highly resent your implication that I don't "bypass the funnel cake stand and enjoy good health".
Do you have the audacity to think that just because I don't give up gluten, I spend my time at the funnel cake stand? Truth to tell, I haven't even had the time to SEE a funnel cake stand in a good many years, let alone indulge............ besides - *I* don't eat sugar.........
Yes, we do have an obligation to new members --- ALL of us, whether or not, we are "five star generals" need to be careful and when someone touts the same message day in and day out, people who are not necessarily informed, tend to think that message is right.........when it's not.
I think it's been shown that g/f is NOT right for everyone. We all have to read the posts and respond according to what the individual is asking or needs -- not everyone needs to hear about g/f, reading your journal, or taking certain vitamins/minerals, etc...........
You said: "So at what point do we need a reason to eat and live healthy? I've reached my breaking point with this disease. I refuse to throw up my hands and let the pharmacies take care of me."
No one has ever disputed a "need a reason to eat and live healthy" ...... we all should eat and live healthy. Our point has been that "healthy" for YOU, may not be "healthy" for ME; therefore, when you post that ALL Hashi's MUST go g/f -- our antennae go up immediately.
The message for newbies should be that we are all different and that some things work for some people, but not for everyone...........anyone who makes an "across the board" statement, such as "ALL Hashi's must avoid gluten" should be discounted..... it all needs to be presented on an individual basis, as in "this worked for me, but doesn't work for everyone"...........how simple can it get??
No one is “slamming” you for your gluten-free success. Actually, this is NOT the way I see it (quoting Tamra’s last post):
“The way you see it is that I am pointing newer members toward a drastic lifestyle change for no reason. So at what point do we need a reason to eat and live healthy?”
The way I see it is that you have repeatedly implied that 1) there is a cause/effect relationship between Hashi’s and gluten, and 2) that a g/f diet can “treat” thyroid auto-antibodies. Furtherrmore, because you have repeated both of these so often, newer members are beginning to take them for granted and to discuss them as though they were accepted scientific fact and medical practice. (See my quote above from a related thread.)
I am asking you either to provide proof of 1 and 2 above or to agree to stop posting these ideas so ubiquitously.
Since we’re being blunt, here’s what I’d like to see:
1) studies proving that gluten is the cause of Hashi’s,
2) studies proving that, once you have Hashi’s, a g/f diet will send thyroid antibodies into remission,
3) studies proving that K’s methods actually TREAT autoimmune THYROID disease,
4) your response to members’ questions regarding the holes we’ve found in K’s theory.
It seems to me that we are not asking you for much. To the extent that you have been touting the gluten/thyroid antibody link, 1 through 3 ought to be at your fingertips. #4 might require a bit more dialogue. This is not Facebook, Twitter, or a personal blog…our standards of proof must be higher. My feeling is that your comments would be much more appropriate on a celiac/gluten intolerance or nutrition forum than they are on a thyroid forum, since no CAUSAL or CURATIVE relationship has been established between gluten and autoimmune thyroid disease.
Playing the “persecution” card, citing op/ed pieces like the Mary Shomon article referenced at the beginning of this thread and soliciting further testimonials like Stacy’s is simply a diversionary tactic to avoid the task at hand. You are dismissing our concerns and accusing us of bullying to avoid answering our questions.
Alternative to 1 to 4 above, and so that we can all get back to the business at hand of informing each other of FACTS regarding THYROID disorders, you might consider agreeing to a moratorium on the widespread recommendation of g/f diets for THYROID patients and the recommendation of THE book (including the “read my journal” references to both of these). Unfortunately, we have all been trying to be “nice” and have given you a free rein with your theories. I believe the quality of the forum is now being compromised by the extent to which g/f has been recommended for thyroid patients with no science to back it up.
I think a g/.f diet can still be suggested on a very individual basis and with the many caveats we have all mentioned in the many posts above. However, I also think it’s time to give it a rest considering it’s recent overexposure so that this forum stops looking more like a celiac forum than a thyroid forum. This needs to be brought back to an appropriate perspective.
Just got back online after moving all the furniture last night to my new home to find this post STILL going.
I say things as I see it and it was ME Tamra who was slammed by your so-called Doctor because I did NOT agree with you or a so-called Quack promoting his website here.
It was NOT Barb.
I also do NOT agree that G/F is for EVERYONE and coming from a Doctor who is a Chiropractor who cannot substantiate his claims...and to me seems to be on another band-wagon to gain those lovely American Dollars to gullible, unwell people with his book that is full of absolute garbage ........he is doing what a lot of commercialised Doctors do.
Just as the one who is no longer registered because he did not comply with Medical Standards.
You accuse everyone of attacking you but what members are saying here is......you may well believe that G/F is good for you then GREAT.
But like religion ...do not ram it down peoples throats or get high and mighty and attacking because not everyone agrees with you.
Yes this posting is directed at you Tamra because maybe it is about time someone said it like it is ...instead of beating round the bush!
You are G/F...GREAT!
But dont expect me or everyone else to believe claims that cannot be substansiated with FACTS.
If a Doctor told a patient that their Cancer would go if they ate certain foods...would YOU believe it?
Get your facts, provide them here and then MAYBE members could believe in something CONCRETE.
If I have upset you (which I think I have this time) then I sincerely apologise but up until now..NO-ONE has attacked you.
You are the one who is attacking ...all because CONCRETE FACTS have been asked for.
Facts that cannot be substansiated or proven.
This Doctor Datis Karrazzian is nothing but another 'quack' in my eyes and if that upsets you then I am sorry but I refuse to be badgered and attacked for NOT believeing in this Doctor.
And that is MY opinion.
No-one elses but MINE.
We all want facts from this Doctors studies, tests, etc and none have been forthcoming.
If his practise is doing you good and you are well...then as I said earlier ..GREAT .
But dont expect people to believe in everything that is posted if no back up is there.
And do not attack members for something I posted.
I think you owe Barb an apology.
If I have upset other members by this posting, I sincerely apologise but I refuse to be badgered to believe in something that I clearly DO NOT believe in.
As I said in an earlier posting...I agree to disagree and that is my right.
This posting will probably be deleted but like you Tamra , I strongly believe it needed to be said.
It seems to me that everyone has made their point on this subject. The main idea i get from it is this:
Tamra: is testifying what has happened in her own personal experience "without scientific data to back it up" so that she would be misleading to make a blanket statement that this would work for everyone" (i didn't see her doing this but maybe i missed something somewhere) this is a very long thread.. but honestly it doesn't matter if she did or not which brings me to my next point..
Others: is stateing to not make a general statement that this particular thing will help "everyone" because there is no credible scientific evidence to back it up and unsuspecting "innocent" new thyroid sufferers may find false hope and self treat based on someone elses testimony..
2 points here:
1. Anybody who logs onto this website or any other website for that matter are subject to someone elses testomonies "in my opinion that's what this website is all about" we are at our wits ends with "Dr's and their "scientific evidence" limitations on treatment for our disease because to us it's substandard. I take no responsiblity for someone who blindly follows what has worked for me.. I would only be stateing my testimony and that it may or may not work for them "this is the only comments i've seen from Tamra"
2. I have the same frustrations from the same people who are frustrated with Tamra in highlighting the "scientific evidence" aspect of it.. the treatment based on FT3 "which there is another thread about it that i posted" Just about everyone on this board is promoting treatment based on FT3 but yet the "scientific evidence" is so controversial that i don't think anyone knows, or can make a blanket statement about it but they do, and when i come to this board for advise and concerns i get bombarded with "what is your FT3" this is CRUCIAL in treatment and we can't help you without it, but yet the same "credible" scientific data that exists treatment based on FT3 is the same scientific data that exists for Gluten free diet but the same people complaining about credible scientific data are the same people promoting treatment based on FT3 with no credible scientific data or at the very least the same.. (this in my opinion is the same thing)
the take away from this in my opinion is that there is no one size fits all.. We all know this, wether we agree on anything else we all at the very least agree on this.. i believe this topic has been beaten to death and that any unsuspecting new thyroid sufferer gets the point and everyone is responsible for themselves whether they read the latest hype or quick fix or anything else we find on the internet.. We are all ultimately responsible for ourselves and the things we read, or advice we follow..
I don't think Tamra was wrong in her posting information she has found to go along with her testimony, we can say the same thing about treatment by FT3 levels but yet a lot of people here advocate it and are of no help if you don't have it....
this is a really interesting thread. I've been mostly just reading and not joining in but would just like to say I think dpleiman's post above is highly salient and well made.
thanks all for the knowledge and passion shared. I find all of it incredibly useful and am in no hurry for the discussion to end as I feel I'm learning a lot.
if everyone could calm down a bit going forward though that would be even better. It's the discussion that's valuable, It sounds to me like everyone actually really respects each other and it's a shame a bit of emotion has crept in because of everyone's passion about the issues involved.
Perhaps that emotion has come up in response to a few comments made in places that might look a bit careless on re-reading and seem to have escalated a bit as the discussion has developed, we are all grown ups and could perhaps rise above the personal stuff now, to focus on debating the issues.
there, I've done it, I've dipped my toe in this scary but very compelling thread, and it was a scary thing to do as I don't want to be the but of anyone's ire for saying my piece and there really have been some harsh sounding words on here from several posters, probably not intended to kill participation but worth noting that they could have had that effect on some people and I find it difficult to imagine anyone would want that so perhaps something for the next person to post to bear in mind....
a more gentle tone all round might serve us going forward.....
oh god, now I'm terrified what feedback I'm going to get, but I've said what I wanted to say.
"Tamra: is testifying what has happened in her own personal experience "without scientific data to back it up" so that she would be misleading to make a blanket statement that this would work for everyone" (i didn't see her doing this but maybe i missed something somewhere) this is a very long thread.. but honestly it doesn't matter if she did or not ..."
It does matter; this is the point of this whole discussion...you have missed something. We are not reacting only to what is contained in this particular thread (and, yes, it has gotten very long). The crux of K's book is that gluten causes Hashi's and a g/f diet is a MUST for everyone with Hashi's. Although, of late, Tamra is careful to include "this is not for everyone" in her statements, this has not always been the case. The book and the g/f message have been touted day after day for months to just about anyone and everyone...newer members are starting to talk about a g/f diet "curing" Hashi's like it's an accepted fact. Yes, everyone is welcome to share their experiences. But, this has gone way beyond sharing, as I pointed out early on in this thread.
Even the title of this thread, "More research connecting gluten to thryoid disease", is misleading..."more" indicates that we have already seen some, and this is just adding to it (we've seen none so far)..."research" indicates that the article referred to is more than an editorial piece (if you read the original text of the study cited in the article, you will see that some of MS's opinions are NOT part of that study). And, more importantly, as an original post, this thread is addressed to "everyone". Personal experience has its place...it can even be an original post...once. It's just been way overused.
Whenever someone touts a treatment as a "cure" for something that is not curable, they have to be questioned. No one has ever said that treating FT3 levels is going to cure a thyroid issue; however, studies show that FT3 levels "do" correlate best with symptoms and when FT3 is adjusted properly, most symptoms will ease or go away completely, for many people. Keep in mind -- this is not a cure, it's a treatment; and you are absolutely correct that no one treatment works for everyone.
The problem is that Tamra DID, on many occasions, in other threads, make the statement that going g/f and/or following Dr K's protocol could/would CURE Hashimoto's. It will not; I happen to have bought Dr K's book, just to see if it's all it's cracked up to be -- trust me, it's not. Even Dr K was smart enough to put in a disclaimer that states that his protocol is not a cure.
The second problem is that, rather than come out and say she didn't have the data we were asking for or even trying to discuss the issue with us, she, first had the audacity to accuse us of persecuting her - if all else fails, lay on the guilt trip?; and when that didn't work, she flat out attacked me; erroneously, I might add. Up to this point, we have seen neither discussion on her part; nor an apology.
It has been stated many times during this thread, that we are all very happy that Tamra has had the success she has. I think it's wonderful, absolutely. Same goes for anyone who has been successful with going g/f.
It's been mentioned that this protocol is taught to chiropractors mostly, who normally do not treat thyroid issues. I would venture to say that the majority of them don't know as much as some on this forum know about thyroid, yet they are treating people with a very serious disease. Wouldn't it make sense to think if the protocol were so great and there was proof that it really works, mainstream medicine would be embracing it?
There are any number of things that can be done to help make our thyroid symptoms less "severe"; not any of these things fit EVERYONE, ALL the time; we have to look at the poster's situation and answer accordingly, i.e. if someone complains of joint/muscle aches, I might suggest that they try magnesium; however, if they complain of headaches and fatigue, I would suggest something else. My point is that not EVERY question requires the same answer; and not every situation has the same solution. Yet, for some time, almost everyone of Tamra's posts insisted that going g/f would cure Hashimoto's.
There never was intention to "kill participation" and there never was an intention for anyone to get hostile. I might suggest that anyone who is in doubt about how things got this far, you go back and read the entire thread again. Admittedly, it is getting very long and hard to keep up with.
On a final note: yallolorry, you won't get negative feedback from me. You are entitled to you opinion and it's valued. You are right; a more gentle tone might have worked wonders at one point.
No one's going to beat up on you! What you're seeing here, I believe, is months and months of pent up frustration surfacing. Unfortunately, since many of us have asked questions and have received no response (in this thread), but instead have been accused of "persecution" and bullying, the frustration continues to build. So, sorry if we appear threatening, we don't mean to be, but we are also only human...
I agree that this is a really interesting thread. I'd like to see more resolution before it ends.
Well, this thread is still going, and I can't always comment since I actually do have a job and a deadline, but my artwork is uploading, so I'll chime in now.
First, Barbara, sorry for attributing Smiler's comments to you.
Next, thanks Yallolorry for trying to soothe this topic and love and light to you as well!
I will touch on a few key points before I have to split.
Dr. K's book has lots of research. Look in the footnotes in the back of his book where he refers to these studies.
About a year ago, another poster came to this forum and asked our advice because her holistic doc wanted to treat her disease. We all chimed in "NO!" I now regret that advice. I've leaned to trust in the doc who makes you feel well, whether he/she is an endo, an MD, or a holistic doctor.
I belong to another strictly Hashi online support group. Many of my friends there are on a whole food, low carb and GF diet. Many of us have had to eliminate some dairy, etc. but the key is that we all feel MUCH better. As I said in my very first post, I know the GF diet isn't for everyone, but I want others on this forum to know that I, and many of my other Hashi friends, have found much improved health through dietary changes. My friends Alice and Linda have seen their antibodies drop by the thousands and they no longer take thyroid hormone.
I am currently seeing an endo who treats my thyroid levels and gives me my much needed yearly thyroid ultrasound. However, he does not test or treat adrenals and he does not test or treat TH1/TH2 dominance. I go to a team of holistic docs (who are also chiropractors) for that. In the past several years in searching for an answer to my unexplainable illness, I've never met a team of more knowledgeable and caring doctors. I'm sure there are those chiros who specialize in accidents, etc. These docs I'm seeing are different. We have many Hashi patients in our office who are also much improved. I speak to them in the waiting room. Their good health, and my good health, validates my decision to follow a holistic approach to wellness.
My antibodies have not gone down, Goolara, however, I am not measuring my antibody levels to track my success. For me, the fact that I feel well again is a much better gauge. My adrenals are still trying to play catch-up, but I'm feeling so much better now.
Maybe we don't all agree that gluten and leaky gut syndrome is somehow connected to thyroid disease, but I think we can all agree that if you remove something from your diet and you feel better, then it was a wise decision to remove it.
Last year at this time, I could hardly get off the couch. Now, I'm reclaiming my life and making up for lost time with my child.
By the time I convinced my third endo to check my thyroid antibodies and levels, my frees were bottomed out and I'd become dependent on prescription painkillers. Can you imagine that life through my child's eyes? She cried hysterically during The Little Mermaid when she realized Arial didn't have a mother. I'm sure there are many, many thyroid patients with similar stories, and I feel compelled to help them know that they might have the same results as me through dietary changes.
This is an open forum where people should be able to bring new ideas to the table without persecution. For those who've claimed that I've inundated this site with posts about my diet, I scrolled through my three most recent posts about my progress: July 7, June 18 and April 29. That's less than one post a month. Please don't try to silence someone's opinion just because you disagree.
You are determined that you've been persecuted aren't you? If I had the time, I'd love to go back in the threads and list every time you touted this diet, book or posted the "read my journal" comment; unfortunately, I have better things to do.
I guess we can take it that you really don't have research to back up your statements, other than to tell us to look in the back of Dr K's book. The fact that you have only one source to back up your statements, says volumes, by itself.
And you know, the really sad thing about all of this is that you still haven't even gotten the point.
K's book has a huge bibliography. However, I don't think it's incumbent on us to go through it all to find the studies that actually support his theory...it's incumbent on YOU as the promoter of this theory to provide links to the original studies.
As I've said right along...if it makes you feel better, do it...but do not proclaim it to be cause or cure of Hashi's without studies to prove it. Your friends' antibodies may have gone down by the thousands, but are they down to zero? That's really all that's important. If they haven't gone to zero, then they will continue to destroy thyroid function, and they will eventually again require thyroid meds.
I totally agree: ".Maybe we don't all agree that gluten and leaky gut syndrome is somehow connected to thyroid disease, but I think we can all agree that if you remove something from your diet and you feel better, then it was a wise decision to remove it." Absolutely, but if you cannot positively link this to an improvement in your THYROID condition, then perhaps the amount of exposure it's received here is inappropriate to a THYROID forum.
"I'm sure there are many, many thyroid patients with similar stories, and I feel compelled to help them know that they might have the same results as me through dietary changes." This is the point, Tamra, there is no evidence that this approach helps thyroid patients who do not have other issues (gut, general health, poor diet, etc.). You have to relate this to THYROID patients.
I think you missed a post or two (or two hundred) when you were scrolling. Your "three most recent posts about my progress" were but the tip of the iceberg in all your posts over the last few months pushing the book and the gluten/Hashi's connection. I would invite any one interested to scroll a little more slowly through your posts. I'm sorry, but you took a very selective sampling of your posts. You and I both have the same disease, so we are naturally attracted to the same questions on the forum...I read a lot of your replies...there were literally hundreds promoting both K and g/f.
No, I'm not missing the point here. Any idea that doesn't fit into your nice little box is considered absurd and not worth sharing. It's very discouraging for new thyroid patients who come here looking for a way out of their misery and all other options have failed.
Many years ago, when the approach to treating thyroid disease was simply measuring and treating TSH with a synthetic T4 drug, those who screamed for T3 hormone and FT3 and reverse T3 tests were shunned by many high ranking doctors. Actually, that practice is still going on today by many otherwise esteemed endos. If these conventional thyroid treatments worked so well, we wouldn't need this forum.
Now, here I am, sharing my success, which, absolutely is thyroid related if my antibody attacks have STOPPED, and I'm taking MUCH less thyroid hormone and if MANY of my Hashi friends are seeing similar results with a change in diet. But my dietary changes are not to your liking, so I must be silenced. That is the point I'm getting.
I have a right to share my success story with other thyroid patients. I will not be bullied. I have already been to hell and back, so your insults mean little and do not dampen my mood. NOTHING you say will discourage me from sharing my journey to wellness.
I've got a busy week and may not make it to the forum, so someone else will have the last word, I'm sure.
Tamra, you are an intelligent woman, so I'm sure you're not missing the point, rather evading it.
Yes, "new" and "different" ideas have been adopted in thyroid treatment throughout the years. However, these were based on science, not someone's holey theory.
You just said your antibodies have not changed...how can you still insist your antibody "attacks" have stopped? You're taking less hormone due to better absorption...more is getting into your bloodstream without being immediately eliminated. A moot point, isn't it?
The point is that your success can be shared, but it has to be done on a much more individual basis. You have abused it, and it has gotten out of perspective. I believe the forum is starting to suffer from it. Many, many of us have had just as much success to wellness, and we changed little to nothing in our diets. What works for you, might not work for someone else.
However, apparently you are right, NOTHING any of us can say will influence you in the slightest. I'm right; the world's wrong??? I'm getting quite tired of talking to the wall personally. I usually pretty much know when I've been flipped off.
I do not have Hashi's but do have Graves and my dosage of T4 med has also been decreased in the past but that had nothing whatsoever to do with gluten free as I am not gluten free.
I did notice that the less I ate, the less T4 med I needed and I have no thyroid.
It had nothing to do with the Graves antibodies ....just the fact that I was MORE active at work and eating LESS...hence the need for a decrease in meds.
But Yes I do agree with Goolarras postings in the fact that G/F has been rammed down our throats non stop for the past few months with no scientific back up to prove that it is beneficial to EVERYONE.
Personally myself...I have no issues with the gut,intestines or gluten so will continue taking gluten.
There are too many quacks out there who tell you a heap of garbage.
If it works for some...then great but it is NOT for everyone.
But it is also worthwhile remembering that MANY Hashi persons will go through a 'normal' thyroid function level 'phase' even though they have Hashi antibodies.
And that IS a scientific fact.
Hashimoto's typically involves a slow but steady destruction of the gland that eventually results in the thyroid's inability to produce sufficient thyroid hormone -- the condition known as hypothyroidism.
Along the way, however, there can be periods where the thyroid sputters back to life, even causing temporary hyperthyroidism, then a return to hypothyroidism.
This cycling back and forth between hypothyroidism and hyperthyroidism is characteristic of Hashimoto's disease.
So, for example, periods of anxiety/insomnia/diarrhea/weight loss may be followed by periods of depression/fatigue/constipation/weight gain.
You said: "I do not have Hashi's but do have Graves and my dosage of T4 med has also been decreased in the past but that had nothing whatsoever to do with gluten free as I am not gluten free.
I did notice that the less I ate, the less T4 med I needed and I have no thyroid."
Are you talking about the less food in general that you ate? or the less food with gluten that you ate? I understand that you have not gone g/f -- have you cut back on it at all?
The reason I ask is because I had to cut back on my levo some time ago, also, and I was trying to limit the calories in order to lose some weight; just wondering if that's the link? Less food in the stomach, better absorption, even with gluten?
Whatever the reason for the decrease, it still counts as a decrease, right? LOL
With working on the road going from client to client, I often eat 'on the run'. Some days I may have lunch at say 3pm (not good but no alternative).
I am talking about food in general.
I wouldnt give up Gluten as I am not gluten intolerant, have been tested for ALL autoimmune disorders and came back negative (by a Molecular Science Doctor and also an Allergist).
Barb..I eat gluten EVERYDAY, I love bread and refuse to give up something that I dont need too.
My lunch (which I make myself and carry in a cooler bag in the car) consists on a banana or yoghurt for breakfast which is eaten an hour after thyroxin in the car as my first clients are 7am onwards so I leave home at 6.30am.
I then have sandwiches (normal bread/white/fattening one lol) consisting of usually cheese and pickles (love them lol) and I drink roughly 2 cans of Coke zero while on the run throughout the day.
By the time I do get to eat my lunch, it is late afternoon and therefore I dont feel hungry again until around 6.30pm and I cook a meal ready for 7pm.
My Doc told me that as I was 'on the go ' more...more energetic, more confident because of working that I needed LESS T4 med as my body WAS absorbing it better.
Instead of the T4 being digested by the food, it was absorbing straight into the bloodstream.
I have not cut back on G/F at any stage in my life.
I eat the same now as I always have except I try not to eat packaged /frozen foods.
I do have the odd 'binge' on a friday night and have McDonalds (that big M word lol) and am doing fine.
The reason for my weight loss is being on the go working fulltime and I have not exersised or dieted at any stage since RAI.
Do I get tired...of course I do.......Anybody who drives up to 100 kilometres a day and works sometimes a 14 hour day WILL get tired....oh and being 50 too lol.
Do I have bowel issues...NO.
Do I feel sick ? NO
Am I depressed? NO
Do I carry fluid anymore? No. Not since 6 months after RAI when I got levels stabilised.
Am I on a T3 med? NO
Am I happy? YES
There is only one issue I have and this has been checked and tested by 3 specialists.....every now and then I will suffer from Hives (Uticaria) . This has now been pin-pointed down to stress over my youngest daughter.
Whenever she is going through a hard time, I worry about her and Hives appear but not bad like before.
So Barb...as I always say...if it aint broken...dont fix it.
I will NOT give up Gluten just because everyone seems to think it causes problems with ALL thyroid disorders.
After speaking to a Mollecular Scientist, he told me that most of the issues we have in regards to thyroid issues, are from genes and are genetic.
Once you start 'digging ' into mollecular science, you unravel a whole new ballgame.
And THIS is what can cause the problems.
I have a heart murmur from birth (born with Rheumatic Fever), prolapse of Mitral and Tricuspid valves and see a Cardio every year and just got the all clear once again a few months ago.
A positive attitude is the secret to wellness in my books.
I can't argue on any of your points. I just wanted to make sure that everyone understood that you ate less food, not less gluten.
I have not given up gluten either; don't plan to because both my pcp and endo have told me there's no reason to.
I do still have some issues - tiredness (not the eternal fatigue), and weight issues, but I know where that's all coming from. I was doing great, until my aunt was recently dx'd with breast cancer and since I'm responsible for her, it's fallen to me to deal with her issues as well as mine and she lives about an hour and 1/2 away from me. It's not unusual for me to be talking to her doctors, testing facilities, pharmacies, etc as much or more as I deal with my own. The stress is what's doing the damage. I thank God daily that my levels were good when all of this started or I would not have been able to deal with it.
In addition to that, during the summer, I am required to work 10 hour days (I get up at 3:00 am and go to bed around 7:00 pm, except on weekends); I've often commented to friends that I seem to be really tired lately and they'll ask what I've been doing. When I run the list, they look at me like I'm nuts and say "geez, I got tired listening to you"........so I guess with my schedule and everything else going on, I have a right to get tired.
I am on the go all day, as well, and I don't always make sure I have enough healthy stuff with me --- therein, lies my downfall. I eat breakfast (usually egg and whole wheat toast) at about 4:00 am, then carry some fruit (usually fresh cherries) with me for my "2nd breakfast"/snack around 8:00; depending on where I am/what I'm doing, lunch often ends up being drive through at a fast food place around noon. I rarely eat an evening meal, but that fast food lunch ended up being enough to cover all the calories for the day........lol
All of this doesn't take into consideration that I think I have some pre-diabetes issues going on. I do check my fasting blood sugar and it's often well over 100; my last A1c, done a couple of years ago was right at the top of the range, so (former) pcp wouldn't look at the records I'd been keeping. I've been rather lax with the record keeping, but I know the issue didn't go away.
I've come to realize that there are times that we can't blame all of our issues on thyroid. We have to look at what's going on in our lives and take everything into account - treating the entire body/lifestyle.
When my girlfriend died last October then my Father died in January this year, I was under major stress as I was also dealing with 2 sisters who cleared out my Dads bank accounts and have since been charged.
I was also railroaded as I requested info and wasnt given it due to the coverup of fraud on behalf of my sisters who had P.O.A of my Fathers Estate for the last 10 years.
Then my daughter kicked out her partner and 6 weeks ago her 5 year old son (my grandson) was diagnosed with ADHD and then 2 weeks ago..Autism as well.
So STRESS has been my middle name since October last year.
This caused me to go 'borderline Hypo' along with the fact that I had a Pit. Tumour removed in Marsh this year.
Barb....stress does a lot of things to our bodies and I find with me....excessive major stress makes me hypo which required 2 increases in meds.
But the hypo symptoms were not devastating or major...just an inconvenience.
Prednisolone for the Hives made my FT3 plummet to an all time low but that came up within 4 weeks with the increases.
I must stipulate that through all this stress, I finished my nursing degree and also passed my med endorsed degree (legally qualified to administer medications and injections etc). I sat these exams 3 days after Dad died and found out in Febrauary I had passed.
But something I would also like to stipulate too.......I thought the Hives was from being Hypo.
It was from major stress.
My levels are good now and I still get the odd ocassion where I get 'lumps and bumps' lol but just take an antihistamine and they are gone.
I have noticed a 'pattern' that my hives come up when I am stressed and at no other times.
I advise EVERYONE NOT to blame the thyroid for every little symptom as usually from something completely different and unrelated.
I blamed my levels and I was wrong and I will be the first to admit that too.
As for gluten...I eat it and dont intend giving it up.
It doesnt affect me in any way whatsoever and when I questioned the allergist about this as Celiac came back negative...he said a lot of people are ALLERGIC to gluten and that the usual treatment for that is to stop gluten then SLOWLY introduce it back into the diet.
Hi, folks, This has been a great discussion and I've learned a lot! Despite some negativity, you've all provided some great information and food for thought. At this point, though, it seems as though the same ground is being covered again and again, with nothing new forthcoming.
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