strange symptom

[longhaul195]

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

[beentrying2quit]

Weight loss is a big symptom of Celiac...your body is not able to absorbe nutrients from the food you eat.

[KAnnDo]

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.

[KAnnDo]

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.

[longhaul195]

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!

[italianmom]

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.

[KAnnDo]

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. &nbs