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I Hope I Have Celiac Disease


whistle

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whistle Rookie

Hi everybody! I was looking at Celiac sites yesterday, and I hope I have it , because it would explain a lot, and mean I could maybe have a more normal life. I've decided to get tested, but would also be interested in any insights you have to offer.

I'm 40 years old, and had my thyroid gland removed when I was 17 due to cancer (papillary carcinoma). About 8 years ago I started having trouble regulating my replacement hormone levels, and went on a hyperthyroid-hypothyroid roller coaster for about 6 years. My levels have been good for the past 2 years and my health has improved somewhat, but it doesn't seem to be improving anymore, and I feel like a wreck. During my illness, about 4 years ago, I got a bad intestinal infection with blood and great pain. The specialist said it was likely food poisoning though they found nothing like that in stool samples (possibly the critters were already killed by two very nasty antibiotics). The doctor said I might get irritable bowel for "a while" as a result, so my digestive problems have been tagged as that. But it never improves and I think I have some symptoms of Celiac Disease. I've been blaming all my symptoms on either thyroid or irritable bowel. Here they are:

-undigested food in stool (some days I find myself thinking "what a pretty salad that is twirling in the toilet, it looks like the salad I ate yesterday!")

-pale stool (last few months mainly)

-loose stool & diarrhea

-abdominal discomfort, pain, burning, bloating

-heart burn

-headaches

-severe menstrual cramps

-exhaustion, fatigue, weakness

-anxiety & "bad nerves"

-bouts of depression

-occasional bizarre zinging pain in my legs - (must sit down or legs will buckle - goes away quickly)

-sore wrist joint

-very sensitive teeth (past 2 years)

-bone receding in gums to an unusual degree

-occasional itchy rash (much more frequent and severe in my 20's)

-dry, sensitive skin

-allergy to nickel, rashes from glue on bandages, irritation from most toilet paper...

-difficulty paying attention sometimes

...hmmm...am I forgetting anything?

I told my doctor I wasn't digesting my food properly quite a long time ago, and she checked for B12 and it was okay at the time.

After I was born, my mother, who was unable to breast feed, gave me formula but it caused me to poop green. The doctor told her to switch to cow's milk. Now I'm wondering if it was the gluten in the formula that was the problem.

Any comments would be greatly appreciated. Thanks.


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happygirl Collaborator

I hope that you are able to find some answers to your health concerns. If you are planning to be tested, you must continue to eat a regular gluten containing diet until all testing is completed. When you go to your doctor, ask to have the Celiac blood panel run, which includes the following five tests:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

Mother of Jibril Enthusiast

Welcome to the group!

I know the feeling... when I was diagnosed with autoimmune hypothyroidism, SO MANY things started to make sense. It's not that I wanted to have a chronic disorder, but it gave me some answers to my questions. Since I've changed my diet and added some supplements I feel so much better! I still have a ways to go, but I'm amazed at what a difference it makes.

You should definitely ask for a celiac panel, but keep eating lots of gluten until all the testing is done. Otherwise, you could get a false negative even if you do have celiac disease.

Also... if the tests come back negative, don't be afraid to try the gluten-free diet on your own. It certainly won't hurt and it could do a lot of good.

whistle Rookie

Thank-you so much for your swift and helpful responses. Over the holidays I'll gobble gluten like it's goin' outta style, because it is. After testing is complete, I'm going to try a gluten free diet regardless of the test results. I'm considering lactose also.

Happy Holidays All!

Peace on Earth

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    • plumbago
      @Joel K If the OP is ever in the hospital, and her celiac disease tests did come back positive and she does have celiac disease, she can just tell the doctors that she needs a gluten-free diet because she has celiac disease. They will listen to her, in all probability. And honestly, celiac disease is not taken very seriously inside hospitals, to say nothing of emergency departments, where in any case, the pt may not be able to verbalize anything, and the staff have to act right then.
    • Joel K
      It is illogical not to disclose a positive celiac disease finding to your doctor, particularly if you're 60 years old. Human beings generally begin failing in one form or another from 60 onward and you might find yourself as an in-patient in a hospital or at an emergency room. Drugs often have minute amounts of gluten and hospital and nursing home food certainly contains gluten.  Here's another scenario: Your doctor sends you for annual labs and your WBC count and others come back out of range.  I frankly think one should leave politics out of the equation when it comes to your health. (Insurance isn't about your health, by the way) Or go ahead and don't let your doctor know.  Only one person will have to deal with the results of that decision.
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    • Scott Adams
      Sounds like fun, and I was in Germany a few years ago so you might find these articles helpful:    
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      I just want to mention that we summarize the latest research on refractory celiac disease here: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/
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