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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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      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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