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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Very Frustrated With No Answers
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6 posts in this topic

I've been suffering with tummy troubles for about 18 months now.  I get severe bloating, gas, and feeling of fullness after eating only a small amount, no "C" or "D", or nausea though.  I wake in the morning and feel OK but a few hours after my first meal is when all the symptoms start.  By the time I'm in bed for the night, I am so bloated and gassy that I have laid there wondering if it's possible for your stomach to explode from to much gas in it, that's how bad it gets.  

 

So about a month ago I went to see the doctor and described my symptoms, she was unsure what my condition was and suggested I try a low-fructose diet, and ran some test.  I went on the low fructose diet and cut out a bunch of gluten as well (wheat has the fructans) and felt about 70% better.  After 2 weeks I returned to the doctor and told her I felt about 70% better but I wanted a test to make sure it was fructose (because that is a hard diet to be on).  She referred me to a GI doctor (still waiting for that appointment), and ran more test for food allergies and Celiac disease.  That was two weeks ago.  About a week ago, I decided maybe it was just gluten and not the fructose.  So I've tried to cut out all gluten from my diet and did not worry about fructose.  I started feeling about 85% better.  I was thinking great, I can handle a gluten free diet (better then a fructose free diet), and if it is Celiac Disease, at least I will have a better understanding about what is going on.

 

I just got the call from the doctors office and all tests are negative!  No food allergies, negative for Celiac disease, no closer to an answer about what is going on with my tummy.  Could it be a false negative?  Is there any other conditions it might be?  I am so lost and frustrated!!  

Edited by klv1
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Yes, it could be non-celiac gluten intolerance, which is about six times more prevalent than actual celiac disease (supposedly it is not an autoimmune response - and I say supposedly, because they don't know much about it yet).  Or it could be a false negative, or you may not yet be making sufficient antibodies to measure yet.  Or it is most likely that after two weeks of very low gluten before testing, that enough healing had taken place that the antibodies they test for had retreated :unsure:

 

If you have been gluten lite for only a month, it has not been enough, or long enough to feel the full benefits yet.  Keep up the diet and I believe you can get back to 100% :) whether it is actual celiac or non-celiac gluten intolerance.

 

At this point testing by the GI is probably not going to help because you have a month of healing and even the biopsy could well be falsely negative at this stage and you would have to do a gluten challenge to be accurately tested. :(

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Actually, the biopsy could possibly still tell you something. But, it's an invasive test and there are risks with that, so you would have to weigh the risks/benefits. I had to have both endo and colonoscopy for other reasons. I had an endoscopy at 5 months mostly gluten free (mostly meaning a cheat every 3-4 weeks and not watching CC at all) and I had Marsh 1. That with my dietary response led the GI to dx celiac. My blood tests were negative b/c they weren't done until a month before the scope. 

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Actually, the biopsy could possibly still tell you something. But, it's an invasive test and there are risks with that, so you would have to weigh the risks/benefits. I had to have both endo and colonoscopy for other reasons. I had an endoscopy at 5 months mostly gluten free (mostly meaning a cheat every 3-4 weeks and not watching CC at all) and I had Marsh 1. That with my dietary response led the GI to dx celiac. My blood tests were negative b/c they weren't done until a month before the scope. 

Probably a stupid question, but what is "CC"?

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Yes, it could be non-celiac gluten intolerance, which is about six times more prevalent than actual celiac disease (supposedly it is not an autoimmune response - and I say supposedly, because they don't know much about it yet).  Or it could be a false negative, or you may not yet be making sufficient antibodies to measure yet.  Or it is most likely that after two weeks of very low gluten before testing, that enough healing had taken place that the antibodies they test for had retreated :unsure:

 

If you have been gluten lite for only a month, it has not been enough, or long enough to feel the full benefits yet.  Keep up the diet and I believe you can get back to 100% :) whether it is actual celiac or non-celiac gluten intolerance.

 

At this point testing by the GI is probably not going to help because you have a month of healing and even the biopsy could well be falsely negative at this stage and you would have to do a gluten challenge to be accurately tested. :(

Is there a test to confirm gluten intolerance?  I'm tempted to do gluten OD for the next 12 days before my GI appt. and have them re-test me.  It's driving me nuts not having a clear answer, and it's so expensive every time I have to go to the doctors.  I wish they had a policy where you don't pay until they give you a diagnosis :) .

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Is there a test to confirm gluten intolerance? I'm tempted to do gluten OD for the next 12 days before my GI appt. and have them re-test me. It's driving me nuts not having a clear answer, and it's so expensive every time I have to go to the doctors. I wish they had a policy where you don't pay until they give you a diagnosis :) .

Currently, there is no legitimate test for non- Celiac gluten intolerance. There are a few places that would love to take your money but they appear to have no science behind their tests.

You should get a copy of the labs. See if they really ran A Celiac panel. Some docs run one thing or even read the results wrong. Not sure why.

Cc- cross contamination. Like when someone cooks your burger on the grill where they just toasted a gluten bun.

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