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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