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klink3r

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klink3r Newbie

So I had a severe bout of diarrhea about a month and a half ago. After two years of on and off diarrhea and constipation (not to mention I lost 25 lbs with this particular bout), we went to the doctor, who ordered blood tests. They came back positive for celiac disease and I began a gluten free diet and scheduled a small bowel biopsy to make the diagnosis official. The gluten free diet did not seem to do much for me in the or three weeks before the biopsy. The week before the biopsy I went off the diet so that any damage to the small bowel could be seen. I did not seem to have any negative effects of eating gluten again. The doctor did both a small bowel biopsy and a colonoscopy. He told me afterwards that, just by looking, he did not see any signs of celiac, but we wouldn't know until the biopsy came back. He also scheduled me for a small bowel series the following week. When i went into the series, I was told by the radiologist that he could not see any blockages or signs of celiac either. Today, we got the results of new blood tests and the biopsies back.

1. The small bowel biopsy was clear.

2. The colonoscopy was clear.

3. A blood test for IBD and Crohns was positive.

Obviously I am at a loss. What else could a positive blood test for celiac mean? And if my colonoscopy was clear, how can i be positive for Crohn's disease?

I'm 18 years old, otherwise healthy. I don't exercise as much as i am told i should but I'm not morbidly overweight. The weightloss that came from the bout of diarrhea pushed me into the 'healthy' point of the BMI scale.

I leave for school six hours away in less than two weeks, so any advice or intel would be greatly appreciated. :)


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tygwyn Newbie

From what I've read, one week back on Gluten just isnt enough. You shouldnt have been put on a gluten free diet if a biopsy was scheduled so soon after. This is a snippet from the Open Original Shared Link:

Do not commence a gluten free diet prior to being tested for coeliac disease. If a gluten free diet has been adopted, the tests used to diagnose coeliac disease will be unreliable, and may be falsely negative.

If gluten has been removed from the diet, a normal diet must be resumed for at least six weeks prior to testing. During this

nasalady Contributor
So I had a severe bout of diarrhea about a month and a half ago. After two years of on and off diarrhea and constipation (not to mention I lost 25 lbs with this particular bout), we went to the doctor, who ordered blood tests. They came back positive for celiac disease and I began a gluten free diet and scheduled a small bowel biopsy to make the diagnosis official. The gluten free diet did not seem to do much for me in the or three weeks before the biopsy. The week before the biopsy I went off the diet so that any damage to the small bowel could be seen. I did not seem to have any negative effects of eating gluten again. The doctor did both a small bowel biopsy and a colonoscopy. He told me afterwards that, just by looking, he did not see any signs of celiac, but we wouldn't know until the biopsy came back. He also scheduled me for a small bowel series the following week. When i went into the series, I was told by the radiologist that he could not see any blockages or signs of celiac either. Today, we got the results of new blood tests and the biopsies back.

1. The small bowel biopsy was clear.

2. The colonoscopy was clear.

3. A blood test for IBD and Crohns was positive.

Obviously I am at a loss. What else could a positive blood test for celiac mean? And if my colonoscopy was clear, how can i be positive for Crohn's disease?

I'm 18 years old, otherwise healthy. I don't exercise as much as i am told i should but I'm not morbidly overweight. The weightloss that came from the bout of diarrhea pushed me into the 'healthy' point of the BMI scale.

I leave for school six hours away in less than two weeks, so any advice or intel would be greatly appreciated. :)

You are very young....you can easily have a positive blood test, which means that they detected the autoantibodies circulating in your bloodstream, before any associated damage gets bad enough to detect. Also, you went gluten free before the biopsy and went back on gluten for only a week, which is definitely not long enough! You should eat LOTS of gluten for at least 2 - 3 months prior to biopsy to ensure that damaged villi will show up.

Another thing to think about is the fact that your small intestine is *many* feet long, and when they take a biopsy (even if they do a proper job and take several samples instead of just two or three), it's similar to taking random samples of a football field looking for dog poo. Most of the time, unless the damage is REALLY bad and widespread (which at your age may not yet be the case), you're not going to be lucky enough to hit a damaged area.

Also, Crohn's is often associated with celiac disease and the gluten free diet is recommended for Crohn's as well. Just because the gluten free diet did not do much for you in the few weeks you were on it, and you had no symptoms when you went back on gluten does NOT mean that you don't need to eat gluten free. If you have celiac disease and/or Crohn's you most certainly do need to be gluten free for the rest of your life!

I wasn't aware that there was any blood test for IBD!? are you talking about irritable bowel disease? That's just a "catch-all" diagnosis when they don't know what's wrong, IMHO. :)

Good luck!

JoAnn

P.S. I wasn't the one who originally came up with that analogy of taking samples from a large area of grass looking for doggy droppings, but I don't remember who did....was it Peter (psawyer)?? In any case, it's a great analogy!! :lol:

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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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