1 reply to this topic

[umahal]

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’t ‘give up bread’ so she won’t get tested. My aunty has multiple autoimmune diseases and has recently had a small intestine biopsy for something unrelated and they found flattened villi.

As for me, 10 years ago I developed autoimmune hepatitis and was quite ill. Fortunately this responded to immunosuppressive drugs and I suppose I have been reasonably well since then. However, I have always had problems with my bowels. Constipation in my case and I have always felt extremely bloated. IBS the doctors cry, but when you consider celiac disease links with IBS and also celiac disease links with autoimmune hepatitis and my family history, you begin to ask questions. About a year ago, I started the Atkins diet (pretty much gluten-free), just to shed a few pounds and also as I was getting a few hypoglycaemic attacks. Immediately, I was not bloated anymore and my bowels became more ‘normal’. Also, I started to sleep well again and a chronic ‘red eye’ and sinusitis I had for a year just cleared up. I have an excellent and understanding GP who tested me for celiac disease using the EMA test. The problem is that this came up negative. Unfortunately I had this done whilst I was maintaining a reasonable GFD (Doh!). Also, as I am taking immunosuppressants for my hepatitis, I guess this could also mask a positive antibody diagnosis.

Does anybody else take these drugs (azathioprine otherwise known as imuran) and has it masked positive test results for you?

Oh yes, and recently, after absolutely not eating wheat for 3 or 4 months, I had a sandwich and scone a week ago. I am only just getting over the bloatedness and gas.

Many thanks

[seeking_wholeness]

umahal,

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!