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Cd, Hepatitis And Immunosuppresants

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Dear all

I am a new member and thought I would write about my current experiences, and see if any of you have any feedback you can give me. I am 34 and have been questioning whether I have celiac disease for over a year now. Ever since I was a teenager I have suffered with IBS and interestingly, some people with IBS have underlying celiac disease. However, more intriguingly is my family history. My father has diagnosed celiac disease and he only found out about 10 years ago when he developed DH. He appears to be fine on a GFD and has had no problems. I would bet my house that my Grandma has celiac disease as she shows all the signs, ie: bowel problems, hopeless addiction to bread, osteoporosis and anemia. However, she is 90 and won


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Welcome to the board!

Your personal and family histories certainly make ME suspect that you have celiac disease! All the pieces fit together so neatly, except for the negative blood work! It's true that your being on a gluten-free or nearly-gluten-free diet may have skewed the results, and I suspect the immunosuppressants may have contributed, as well.

I just found this article while I was browsing the site this evening. It's rather technical, and it pertains to patients with refractory celiac disease (which does not respond to the gluten-free diet) rather than regular celiac disease, but this part caught my eye: "Treatment consisted of azathioprine combined with prednisone for 1 year, which was tapered and, if possible, stopped. Results: Clinical improvement was seen in nearly all patients.... Eight of 10 RCD type I patients responded histologically, and complete normalization of villi was seen in four patients." From this I conclude that azathioprine may lessen the effects of celiac disease, which may very well translate to fewer antibodies in the bloodstream.

If you are not interested in attempting a gluten challenge at this point, have a look at the website for Enterolab. This lab can perform stool testing for celiac disease-related antibodies that is reportedly MORE sensitive than bloodwork AND able to detect celiac disease for a longer time after a patient goes gluten-free. They can even do a gene test!

I hope you find this information helpful, and I wish you luck as you pursue a conclusive diagnosis!


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    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
    • Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
    • Your test results, to me, seem to indicate that you do not have celiac disease. (Everything is within normal levels.) And, your total IgA is high. Many people with celiac disease have low total IgA levels (10-15 times more frequently than people in the general population). The total IgA is conducted because about 3% of people are IgA deficient. If you have a very low total IgA, that can invalidate the three blood tests that rely on your IgA levels.   Plumbago
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