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strange symptom
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strange symptom

Has anyone lost hair due to celiac disease? My hair started falling out like crazy and my doctor ran tests and the only one that came up as slightly positive was celiac disease. I've also lost a lot of weight and find it very difficult to gain any if not keep from losing. This all started with anxiety and depression that seemed medically based and not typical. would be very interested to know if this has happened to anyone else. I can't eat gluten free yet due to further testing.
Thanks
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268911_tn?1213748381
Weight loss is a big symptom of Celiac...your body is not able to absorbe nutrients from the food you eat.
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Avatar_f_tn
Yes, I was very interested in your posting, because I have experienced similar strange symptoms, but have not heard of anyone else having anything as similar to what I have as you do.  

Less than 2 years ago I awoke one morning with a feeling of intense anxiety that was not typical and had no apparent cause.  It felt like it was centered in my abdomen, and I had none of the usual muscle tension that is typical when I am actually anxious about something.  I also had a feeling of pressure in my upper abdomen and strange very loud sounding rumbling gas within.  I had never before experienced anything like this before.  Within a short time I discovered that anti-anxiety medication had no effect, but that a half of a pain killer (hydrocodone) relieved the anxiety almost completely for a while.  My doctor agreed that I had some sort of physical problem, but was somewhat skeptical for a time about it causing me to feel anxious.  After testing, I was confirmed to have Celiac disease by both blood tests (not very strongly positive) and a positive biopsy.

My strange symptoms did not start to improve until I not only got the gluten out of my food, but also out of my prescription drugs (not something I thought of at first).  About a year ago the anxiety and other associated abdominal symptoms disappeared almost completely after maintaining a gluten free existence.  My husband and my pets also went gluten free to increase my chances of success, and in the process my husband found out that he is also gluten intolerant!  However, a couple times my strange symptoms returned for a while, but were traced to prescription drugs that contained gluten added in inactive ingredients or through some sort of contamination.  After changing these, both times the symptoms disappeared again after about a week, and have seldom reappeared since then, and only for a day or two and in a milder form (maybe from some unidentified small one time exposure to gluten?).

I also lost about half of my hair this last fall, but the doctors think that is due to low thyroid, as my blood levels dropped a few months after having to change to a different gluten free thyroid drug, after my last bottle of Synthroid seemed to be contaminated.  My dosage of thyroid has now been increased, and I think the hair loss is less now.  When I was first diagnosed with low thyroid about 8 years ago, I had major hair loss, which took a few years to grow back completely.  I understand that quite a few celiacs have low thyroid.  Have you been tested for that?

Good luck to you!  I spent a lot of time figuring out how to find hidden gluten in everything.  But it has paid off and I am really feeling much like my old self again lately.  Also, I enjoy the food.  There are a lot of good things available to eat now, and the number of choices are increasing all of the time with the help of the new allergen labeling laws.




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Avatar_f_tn
OMG!  I just read your other posting about all the meds you were put on for the panic attacks, etc., and that you are very sensitive to medications.

I thought you might also be interested in knowing that some celiac patients have a subtype (3A4) of the cytochrome P450 detoxification system in the liver.  This is the pathway most often used by the liver to detoxify medications, and people with this subtype are more sensitive to medications than the average person.  I am also very sensitive to medications.  Fortunately, I figured out in the first couple of days that my anxiety was a form of intestinal pain and refused any other medications for it except for the small dose of hydrocodone, which worked well.  As an alternative I sometimes use only a quarter of a hydrocodone plus a half of a regular strength Tylenol.

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Avatar_f_tn
Thank you so much for the info! As a matter of fact the first panic attack I had happened after I'd been out for a huge dinner (with a couple beers!) I got home, went to bed and whamo. (By the way, my profile shows I'm a guy but I'm actually a girl! ) I have been wondering about celiac and all the drugs too and have been watching everything to see where gluten is hidden. The past 7 months have been a nightmare with trying to figure out what is going on. I am being checked by an endo in a few weeks although they say my thyroid levels are normal. I'm a little concerned about that because I have symptoms that could go either hypo or hyper. I hate waiting for appointments. I wish something would stop the hair loss. I've been told it could be from the onslaught of drugs I was put on. All I know is I feel awful. And boy is gluten free food expensive. I have been trying it even though I know I'm not supposed to for the tests but I must admit for a couple days I did notice a difference. Feeling a little lighter and not a sickly. Besides the hair loss what other thyroid symptoms did you have? Would love any info you could give me as all these health problems are new to me and I'm a little ( a lot) too nervous.
Thanks!
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Avatar_f_tn
I have Celiac...and hair loss. My celiac was diagnosed by biopsy (the blood tests were negative..therefore unreliable)..but even after being gluten free my hair kept falling out. Drs kept telling me its stress or low thyroid or its my imagination..yada yada yada. I wanted to find out for sure so i went to a dermatologist (that is the dr who can correctly diagnose hair loss issues) and its turns out i have something called pseudopellade. Im still not sure what that is only that it is also auto-immune related...as is Celiac. But at least i know its not my 'imagination' or 'stress'.
Good luck with your problems..i suggest going to the Derm to find out whats goin on with your hair.
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Avatar_f_tn
You're welcome!  I hope that my information will be of help to you.  Is your doctor planning to do a biopsy to confirm the blood tests for Celiac?  I had to wait a while to schedule that and also was told to keep eating gluten - was hard to wait since I was so miserable,  but I didn't want to throw off the test results.  My husband did not suspect he had a problem with gluten, although he had problems with digestion and weight loss for years.  He didn't try eating gluten away from home for at least a couple of months after going on the diet with me and got quite sick the first time he did.  He was tested for celiac, but got negative blood tests, which were not reliable because he had been off gluten for a few months by then.  He was not willing to be sick from eating gluten for several weeks to try to get more accurate tests.  So we don't know if he actually has full blown celiac disease or gluten intolerance.  I'm glad that I have a definite diagnosis.

Yes, the food can be expensive, but many things from the regular grocery stores and fruit stands can be used.  We eat a lot of fresh and plain frozen fruits and vegetables, fresh meats with nothing added to them during processing, and rice.  Fortunately, I live quite near the only fresh fruit and vegetable markets in town, three of them.  They usually have a great selection for less than half the cost of fresh fruits and vegetables in the grocery stores.  I bake my own bread from mostly from mixes from Bob's Red Mill in Oregon (a very dependable source of gluten free mixes and flours - they are made in a dedicated GF facility and tested for gluten in their own lab).  They also offer good advice by phone, if you have trouble getting the bread to come out right.  But we do not eat a large amount of baked goods.  

The "gluten free" labels on food are not alway reliable - some only mean that gluten is not an added ingredient, but foods may be cross contaminated.  The laws defining what "gluten free" should mean will not be settled until sometime this year.  However, because of the allergen labeling laws that went into effect in 2006. most manufacturers of foods and a lot of other products that might be a problem (except many prescription drug companies, which seem to be exempt from the laws) started looking into how their products are manufactured and trying to get answers about gluten as well as other allergens.

Labels can mean different things for different companies.  I do not use anything that I have not checked on specifically by phone or e-mail with the manufacturer.  By the time I was diagnosed in 2006, at least everyone I contacted knew what celiac disease was, but often they were just starting to research their products and had quite limited lists of what they knew for certain was gluten free and not possibly contaminated during manufacture (always ask about cross contamination, not just about what is added on purpose).  When contacted a year later, many companies were able to give me much more specific information, and my list of safe products has grown.  I have a notebook full of notes from my contacts that I hope to organize on a website before too much longer, so that I can access it while away from home, and also to share with others.  This was a lot of work at first, but was well worth it, and now I just need to make occasional calls to update, or to see if I can add something new to my list of safe foods.

Regarding my thyroid symptoms, in about year 2000, I was first diagnosed as hypothryoid with a TSH test.  At that time I had extremely brittle finger nails, major hair loss, and fatigue.  After being put on thyroid, my blood showed normal TSH results in about a couple of months, but the symptoms did not go away for over a year, until after a friend told me about natural progesterone and a book by a doctor who used it in his practice for many years.  The book is called:  What Your Doctor May Not Tell You About Menopause: The Breakthrough Book on Natural Hormone Balance by John R. Lee and Virginia Hopkins.  I was post menopausal, but it discusses the use of natural progesterone at other ages as well.  

My friend said that the progesterone seemed to help her thyroid function, even though she never tested in the abnormal range.  About that time, I had just seen an endocrinologist, who said I might have a problem converting T4 to the more active form of thyroid hormone, T3.  I wanted to try the progesterone before trying a prescription for T3.  I was quite amazed by the results.  Within 3 months my fingernails finally went from having multiple splits in all directions to completely normal, and my hair started growing back.  It took a few years for my hair to grow back to about 3 times as thick as it was when I had thyroid problems, as the growth pattern cycles got out of sync, making growth and replacement of hair unevenly at first.  My hair continued to get thicker even when my celiac disease was at its worst.

Last fall my thyroid levels dropped, but were still in the normal reference range.  My hair started falling out - probably lost about a third of it, and my finger nails started breaking and splitting more often again.  Besides increasing my thryroid, I am using more progesterone again.  When I was busy worrying about the gluten, I sort of let the use of the progesterone cream slide, just using it occasionally when I thought of it.  It hasn't been long enough yet to tell if I have completely reversed the problem, but at least it doesn't seem to be getting any worse.

I use the Kal brand of progesterone cream, because it has a relatively high progesterone content, and the manufacturer says it is gluten free (it is absorbed into the body through the skin, so that is an important consideration).  I have it special ordered for me by health food store, since all the stores in this area stopped stocking it recently.  I have met a number of other woman who have been helped by this product, including with hair loss.  I don't know how many had low thyroid.

The endocrinologist will probably check to see if you are converting T4 to T3, besides checking the TSH.  Not a lot of studies have been done on natural progesterone, so some doctors are familiar with it and some not.  There is no profit to the drug companies in researching it, because it is identical to human progesterone and cannot be patented.  Dr. Lee used it based on studies by a biochemist at OHSU.

I hope that some of this information will be useful to you.


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Avatar_f_tn
Thanks for the input! I have been to see a derm. and she told me it was telogen effluvium but that was before all this other stuff came to the surface. I see her again in a couple of weeks. I got the same story about stress, it may have been the medication...we don't know why, story. In a few weeks I get my thyroid checked although my levels are in the normal range. My GP thinks I may be hyperthyroid, which I really hope not. I have a lot of weird symptoms without anything to explain them. Hopefully soon I will know.
Thanks again
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Avatar_f_tn
Thanks again!! This is going to be hard for me because I am not a very detail oriented kind of person. I have a biopsy in a couple of weeks. I wish they would do it sooner so I could know. Can that progesterone cream be used on someone who might be perimenopausal? I've heard of it before. It would be interesting to try it. It would be nice if my hair would come back, but it's good to know yours grew even with the celiac. Maybe that's not the reason for mine after all. I just saw my GP and he's completely stumped.
None of my tests show much of anything except possible celiac and now he tells me that it barely suggests it. It's very frustrating. Just want my old self back.
Thanks again!
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Avatar_f_tn
I think the progesterone is sometimes appropriate for perimenoause.  I suggest getting Lee's book and seeing if the symptoms he describes seem to fit your situation.  He gives a lot of detail about symptoms, when to use the cream, and discusses use at different ages.  There are usually inexpensive used copies of the book available at Amazon.com.  I have bought a few copies for friends in the past, and even gave one to one of my doctors.  Some health stores sometimes carry new copies also.  It is a paperback, so isn't very expensive, even when new.

It is good that you are having a biopsy.  Have you been referred to a gastroenterologist for this?  I have a gastroenterologist who originally diagnosed the disease, then he referred me to a hospital dietitian who specializes in gluten free diets.  She helped me also find an internist who specializes in celiac disease to help me manage it.  

I talked to one lady who took a couple of years to get diagnosed because she consistently had negative blood tests, but she was finally given a biopsy which was strongly positive.  She was told that her children should be biopsied even if they tested negative with blood tests, because they may follow a pattern similar to hers.  I tested positive for 2 or the three blood tests done, but not strongly enough for my doctor to be sure I had celiac without the biopsy which confirmed it.  I hope you find some answers soon.  Good luck to you.

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Avatar_m_tn
It is common for Celiacs to have hair loss as the disease progresses both because of the inability to absorb adequate nutrients and vitamins required for many functions (thyroid, hair/nail growth...) and because Celiacs is an autoimmune disease, it has the potential to develop into attacks in other areas, such as the thyroid.
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Avatar_n_tn
I have not yet experienced any hair loss but people with auto immune disorders may lose hair. A husband of a colleague of mine was recently diagnosed with an auto immune disease and has had many of the same symptoms as you, anxiety and hair loss.

Good luck!!
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Avatar_f_tn
thanks for the info! Could you tell me which autoimmune disease it was that your colleague's husband has. I'm still getting so much checked out. It's all very frustrating finding what came from what. I would appreciate it!
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Avatar_f_tn
Well i have just been diagnosed with Celiac and im 19 i have noticed even before i knew i had this i was loosing so much hair it was scary, so yes i ahve lost hair and it goes in spurts it seems.
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481426_tn?1267494840
I'm 30 years old and was diagnosed with a gluten allergy/celiacs with a negative test result due to my whole body symptoms when I was on a gluten diet. My sense from my Dr. I see here in Providence RI is that there are many false negatives and he gave me a chose to continue on the gluten diet for him to do more tests or just go with the assumption that I have it and feel better sooner. I opted for feeling better sooner. I know it is tough not knowing for sure but the proof is in the way you feel off of the diet and yes, it takes time to feel right that is for sure. I was also diagnosed with Graves disease about 8 years ago and now have Hashimotos thyroiditis, and my husband and I are trying to concieve (conceive). We have been trying for a little less than a year now and are being referred to specialists due to my issues. Does anyone have input on concieving and celiacs and thyroid?  Also, I suggest those of you who are not on the gluten free diet and have not received a positive test yet, talk to your Dr. it probably is not worth feeling like **** just to get a positive result which is often missed just because of the nature the disorder effects our bodies.
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Avatar_f_tn
One of the symptoms of celiac I had - the one that first got me diagnosed - was severe iron deficiency anaemia, which made me feel very tired and with major hair loss - about half my hair fell out.  I also lost significant amounts of weight in the same period.  I had stopped menstruating as well.  It took the doctor 6 months to diagnose the anaemia, because my haemoglobin was low normal for ages, even though I was a runner and it should have been high.  You need to get your plasma iron levels checked.  The reason for the hair loss with anaemia is that places where cells are constantly being replaced are affected first - e.g. hair, gums, gut lining.  My hair is thicker than ever now - a gluten free diet and menopause have kept my iron levels up.
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Avatar_f_tn
Wow!  I have learned so much on this forum!
I have been dealing with so many of the same symptoms as so many of you all and was at a loss until right now. I too have lost a substantial amount of my hair ober the past year, and being in my early 20's I've had many, many low momentsbecause of it. I was pretty much forced to go to a walk in clinic b/c my G.P kept telling me it was all stress (all being hair loss, stomach acid, anxiety attacks, etc...), The walk in Doc discovered my very low iron levels.It went undiscovered for roughly a year despite my G.P. running scores of tests. I have M.S., which makes everything complicated as it is, but reading that all of these synptoms listed in so many of your posts as though they were my own makes me want to find a way to get my difficult family doc to look into Celiac. What should I do? How do I find out if I do/don't have it? She is currntly sending me for an ultrasound (tom.), but I don't think it's necessary. Please let me know =)

Thanks,
one fairly stressed out young lady
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352798_tn?1399301754
An interesting side note. Progesterone cream can also be very beneficial to males. I have a compounded formula that my Dr prescribed. It helps with mood, thyroid and blood sugar stabilization. In a male it can also help increase testosterone, as the body will break it down according to it's needs.
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Avatar_f_tn
To get tested for Celiac disease, see a gastroenterologist and ask to be tested for Celiac disease - blood tests and sometimes an intestinal biopsy are used.  Do not go on a gluten free diet before testing, as this can cause a false negative.  A YouTube movie from UC does a good job of discussing Celiac disease and what tests should be done.  It can be found at:  http://www.youtube.com/watch?v=QR2LvQmoF1Y

Good luck to you in getting some answers.
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