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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Can A Colonoscopy Diagnose Celiac?
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8 posts in this topic

So a brief background on my husband:

-Plagued with anxiety issues since childhood.

-Prone to nose bleeds as a kid

-Developed tinnitus after working at a feed-mill (teenage years) in Alberta, Canada

-Surgery for fungal ball in sinuses 10 years ago (AFTER 5 rounds of antibiotics due to misdiagnosis of sinus infection).

-major headaches for approx. 10 years (didn't resolve after surgery - ENT thought they found it by accident and had nothing to do with his headaches).

-nummular ezcema?? I know this is not a sign of celiac but it's a type of exzema that both he and my son have.

-blood test showed low levels of calcium and B12

- We have three kids with digestive issues (one with chronic diarrhea, distended belly, hard to fall asleep, moody, long eyelashes and the other with Autism (resolved on Specific Carbohydrate Diet (SCD), which has no gluten, etc).

About a year ago, we all went on the SCD. My husband's issues did not resolve, but he seemed to "cope" better with it all. Then, my husband went OFF the SCD in June and all craziness broke loose. He began having anxiety 'attacks' which he's never had before and gut issues (which also occured when eating almonds). Then he went off the gluten, and the gut pain and attacks went away. Again, it happened the second time. We then went out to a restaurant where there was a language barrier and he decided to do it anyway, despite asking and the waitress saying it was okay. The next day and for a couple of days after that, he was just "checked out". Barely spoke and just couldn't "handle life". Mentioned his thoughts were hard to stop from racing.

Here's where I'm confused. We suspected gluten awhile ago. The blood tests came back negative for celiac but we wonder if he was eating enough gluten. After finding out our son had autism, we removed all gluten from our home. My husband managed to have some everyday but, I can't remember how much. So, I wonder if he really had enough for any test to be positive.

In addition to this, his GI specialist did a colonoscopy to diagnose whether or not he had celiac? He did say he managed to get into the small intestine. I don't know if he did a biopsy of the small or the large intestine but although the biopsy came back slightly damaged, the GI specialist said it was IBS and NOT celiac.

After eliminating gluten (which we plan to continue, although we're wondering to go through with another test unless it is agreed that a colonoscopy can, indeed, diagnose celiac), my husband is able to cope so well. He no longer feels like life is overwhelming (although he has his moments - whereas before it was the opposite). He no longer feels the need to be a workaholic and can simply "be" with us without "checking out". His headaches are also lessening more and more and we're both a bit confused.

I'm thrilled that things are getting better. And I don't necessarily care about whether or not he has some sort of diagnosis. But, as some of you may know, some people just aren't taking his illness seriously at all. It might also help our children and his father (as his father struggles with similar issues).

Anyways, I've rambled on long enough. Thanks if you made it this far!! Please someone help us make sense of this GI specialist as I heard you need an endoscopy.

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Welcome!

The intestinal damage caused by celiac disease is to the villi that line the small intestine. A colonoscopy cannot detect that.

It is common to do an endoscopy at the same time if celiac is suspected. The preparation for a colonoscopy is a pain, but it is more than enough for the endoscopy, so there is no extra prep. A colonoscopy is prudent to ensure that there are no other issues besides celiac disease present.

But in cases where the patient is not eating gluten in quantity on a regular basis, test results for both blood and biopsy may be negative.

I was diagnosed in 2000 with major damage to the villi. Five years later, a repeat colonoscopy/endoscopy showed healthy villi. Because of my age, a colonoscopy every five years is indicated--I'm a bit overdue.

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Really?? So, no matter what, a colonoscopy (even if the so-called GI "specialist" went IN to the small intestine and grabbed a biopsy) could not have tested for celiac? Why on Earth???...

Dawna

Welcome!

The intestinal damage caused by celiac disease is to the villi that line the small intestine. A colonoscopy cannot detect that.

It is common to do an endoscopy at the same time if celiac is suspected. The preparation for a colonoscopy is a pain, but it is more than enough for the endoscopy, so there is no extra prep. A colonoscopy is prudent to ensure that there are no other issues besides celiac disease present.

But in cases where the patient is not eating gluten in quantity on a regular basis, test results for both blood and biopsy may be negative.

I was diagnosed in 2000 with major damage to the villi. Five years later, a repeat colonoscopy/endoscopy showed healthy villi. Because of my age, a colonoscopy every five years is indicated--I'm a bit overdue.

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Hi,

If they took biopsy samples from the small intestine then they must have done an endoscopy. An endoscopy is done by going through the mouth, vs a colonoscopy going through the nether end. It is good to do both at the same time, and it sounds like the GI did that.

The tests for celiac are not perfectly 100% accurate, so even if he got a negative he could still have celiac disease.

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Thanks for the reply. :) No, they *only* did a colonoscopy. They did not go through the mouth. Unless my husband's confused as to which way is up. Ha!

The GI specialist said they went through the large intestine and that he was "able" to reach the small intestine.

Dawna

Hi,

If they took biopsy samples from the small intestine then they must have done an endoscopy. An endoscopy is done by going through the mouth, vs a colonoscopy going through the nether end. It is good to do both at the same time, and it sounds like the GI did that.

The tests for celiac are not perfectly 100% accurate, so even if he got a negative he could still have celiac disease.

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Thanks for the reply. :) No, they *only* did a colonoscopy. They did not go through the mouth. Unless my husband's confused as to which way is up. Ha!

The GI specialist said they went through the large intestine and that he was "able" to reach the small intestine.

Dawna

Not very much of it then :unsure: There are over 30 feet of small intestine and he may have got the 'tail' end ( :P sorry), but there's no way he could have seen very much of it, and the upper part is the most important end, i.e., the duodenum downwards. And you need to take five or six biopsies from different areas to have any chance of a positive result because the damage is not continuous but often rather just in certain areas. I would be extremely surprised if he was able to get far enough to get a proper result.

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Ugh... how infuriating then. My husband specifically WENT to the GI Specialist to test for Celiac. I remember discussing with my husband about the endoscopy and feeling that the GI specialist should do one. The "specialist" insisted that he didn't need one to test for celiac. What a waste of precious time and possible side effects from a procedure that may not have told us anything. *sigh* So much for "specialist". :(

Dawna

Not very much of it then :unsure: There are over 30 feet of small intestine and he may have got the 'tail' end ( :P sorry), but there's no way he could have seen very much of it, and the upper part is the most important end, i.e., the duodenum downwards. And you need to take five or six biopsies from different areas to have any chance of a positive result because the damage is not continuous but often rather just in certain areas. I would be extremely surprised if he was able to get far enough to get a proper result.

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It sounds to me like you got your diagnosis by response to diet. It might harm your husband to eat enough gluten to get positive test results.

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