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I made an appointment with my doctor to be tested for celiac since I've had several problems (digestion and other stuff) for years and it's never been resolved. It will be a blood test. However my doctor said that I will also need a biopsy of my small intestine to confirm if I have celiac disease. It sounds scarey. Has anyone here had that biopsy done and could you tell me about your experience.
Thanks.

Hi Gramma Jackie,
I have never had any of the tests done but it is my understanding that they are not always very accurate, and require you to have extensive intestinal damage before they come back as positive. But they may have newer more accurate tests now.

also you may test as negative for celiac but still be having issues with wheat/gluten.

Good luck with your testing I hope it gives you some answers.. just remember no matter what the test says... listen to your "GUT" , litterally. IF you feel better not eating Gluten then no matter what that test comes back as... avoid the gluten.

And be sure to let us know how everything works out.

What she said.

The gold standard celiac diagnosis requires your disease to have progressed to the point that the villi in your intestines are flattened ... and therefore not absorbing nutrients.

Well I have long standing gastro-intestinal problems. (alternating constipation/diarrhea, bloating and pain) I have other issues as well including hypothyroidism which is also an autoimmune disorder. I didn't know much about celiac disease until recently although I vaguely remembering a neighbor of mine saying she had it, but never asked her symptoms. Whatever is wrong with me, it seems to be getting worse. Anyway, I am going in Friday to have my blood drawn for the test. I just wanted to add that the reason I first didn't suspect celiac disease is because I am so overweight and I thought people who had it were always skinny. However I have been reading about people who took the test and were diagnosed with celiac disease who were as overweight as I am. That really surprised me.

I think in your situation I would have the blood test but pass on the biopsy. The treatment for celiac (based on my reading the wikipedia page about it just now) is simply avoiding gluten. Seems to me it would be less painful and just as informative to just go ahead and cut out all sources of gluten and see if the symptoms improve.

Best wishes, whatever you decide, and keep us posted.

I have have been symtomatic for years, but my blood pressure and thyroid issues have taken the forefront in my medical problems and I shoved my gastro-intestinal issues to the background, but I want to find out what is causing these ongoing problems. It actually seemed to worsen since I've been doing McDougall and I couldn't figure out why unless it's because I began using a grain beverage called Caffix (has barley in it) instead of coffee.

There are at least 3 types of blood tests that can be used to diagnose celiac. I don't know which one the dr. will use. She said if I test positive she will refer me to a gastroenterologist.

Hi GJ, when do you get your test results back?

I don't know. My doctor said she would call me when she gets the results from the lab.

Flattened villi are just the tip of the celiac iceberg. You can have all the symptoms of Celiac Disease without the flattened villi, and test negative even though you may have it. There was a fascinating article in the Scientific American on celiac disease, if you can find it online, I suggest you read it. I had a blood test for Celiac and it was negative, however, I cannot tolerate gluten in the slightest. My sister works in a bakery and I had to tell her to be careful where she places her clothes because I was reacting to the flour on it! I agree, if avoiding gluten works, avoid it. However, if you have been avoiding gluten up to the test, it may be negative since ther ehas been no gluten attacking your stomach. You need to have been eating gluten for at least a month before the test to have a diagnosis.

This message seems a little old but I just wanted to say I think its aweful weird how alot of us with hypothyroid symptoms are also gluten intolerant. My mother was hypothyroid and was diagnosed with gluten intolerance. I was also diagnosed with gluten intolerance. I stopped drinking tap water too because i heard it has chemicals that inhibit thyroid developement. The other things i was told to avoid were like all soy products, peaches, strawberries, peanuts, broccoli (raw), raw veggetables in the brussel family like cabbage, brussel sprouts, etc.. You can google thyroid foods to avoid. I also take thyroid helper, I dont notice a difference while taking it but I did notice a difference when i stopped. I got tired. I think this world and all the polutants and chemicals is what is destroying us. I mean think about it, it's not just a coincidence that everyone has the same symptoms related to the same diseases. Then i just recently found out that my favorite breads taht are gluten free made with Millet flour are bad for the thyroid too!! URGh Rice bread is so nasty.
Then I read about foods to eat for thyroid health and they list tons of protein foods like salmon, tuna, oysters, shrimp, eggs, chicken, low fat dairy....omega 3's... Whats a person to do?? lol

My initial blood test came back from the lab and showed that might have celiac disease. The doctor then ordered another blood test that was also positive. Then she referred me to a gastroenterologist for a biopsy. I am now waiting for that appointment which will be in August. Some days I feel "OK," but most days I have my usual bloating, belly aches. In the meantime I've had a lot of family here this month for the 4th of July and my 65th birthday. So I have been very busy to say the least.

Two blood tests indicating possible celiac? That's useful information, though like many tests these aren't necessarily conclusive. If you decide to go through with the biopsy it may tell you if your case is very advanced. However, if it is negative you most likely still have a gluten problem, judging from your description of symptoms.

Personally, I would skip the invasive test and put myself on a strict no-gluten regimen to see if that clears up the symptoms. If your symptoms go away, ta-da! there's your diagnosis.

Actually, I did that--a number of years ago I had unexplained symptoms (not gastro, though). I sent for the Dr. Fine stool antibody test (EnteroLab) which again, like many tests, may not be conclusive. However it showed my gluten sensitivity was high, and my DNA includes the worst combination of gluten-sensitivity genes. Plus, my brother was diagnosed celiac (blood test) and my aunt is a diagnosed celiac. Hmmm.

So I started eating a gluten-free diet, being very careful to do it correctly. The result? My symptoms did not improve. I had to keep searching for the cause, and after another couple of years of going to doctors finally found out I have Lyme disease.

Interestingly, because Lyme disease damages your system in so many ways, doctors often tell their patients to go gluten-free during treatment. So, I have just continued this diet as a precaution. Some day, when my health is recovered, I may try eating gluten again. Or on the other hand, I may decide that my DNA is against me and it might be wiser to just stay off it.

Anyway, it's not so bad once you get the hang of it. Why not just give it a trial and see what happens?

Hey Gramma Jackie.... are they testing you just for the gluten allergy or other stuff too?

hope you find some answers as there really is nothing worse than not feeling good and not knowing why.

I know that I could simply switch to a gluten-free diet and it might clear up my symptoms without having to have a biopsy. However if I have other things go wrong such as leaky gut syndrome or heaven forbid, cancer, I think that having a 100% confirmed medical diagnoses rather than just saying there is a possiblity of celiac would be highly beneficial. I have been to the gastroenterologist before for a colonoscopy and I trust him. I was due for another colonoscopy anyway since I have a history of polyps. He will be doing the colonoscopy at the same time while I am sedated so that sort of takes care of two things at once. I know that most people don't like invasive procedures. Who does? But sometimes they are neccessary. I almost died before I had my gall bladder taken out about 18 yrs. ago because I waited too long and the dr. didn't seem to think it was a big deal. By the time I got to the emergency room it had ruptured and I got peritonitis. So I don't believe in taking any chances with anything. Needless to say I didn't stay with that doctor.

p.s. And yes I will get probed on both ends!