New-Would Like Some Imput

[SueQueBlue]

Hi-I am new to the board and would love some input from people that have been dealing with Celiac.

I had my gall bladder taken out last year, and since then still have pain, along with diarrhea and IBS symptoms, plus some autoimmune and fibromyalgia issues.. I had an upper endoscopy done in October, and the results were just mild inflammation. Since then the pain continues to get worse at times. I have had celiac tests done in the past, and all were negative. I have had an increased sed rate, my last ANA test was "slightly" positive and my CRP is also elevated.

My primary care dr sent me to a Gastro dr at a University Hospital. She felt at first my symptoms sounded like Irritable Bowel that has gotten worse due to my gall bladder being removed. She did a colonscopy, and all was fine. As a last minute check, she did an Inflammatory Bowel Disease blood panel. I felt that it would probably all come up fine, but surprisingly, one of the celiac tests came back positive. The AGA/IgG, AGA/IgA and TTG/IgA were all negative, but the EMA/IgA was positive, and the lab states "Results support a diagnosis of celiac disease. I have tried to figure out what all that means, but it is very confusing!

So now I am scheduled to have another upper Endoscopy on Monday to check for physical signs of Celiac. Does anyone think that I will show physical damage from Celiac, and can anyone interpret these results to English for me?

Thanks in advance for any information.

[Skylark]

Hi there and welcome. Sorry you're having so much trouble.

Let's see. In English, you came up positive for an antibody that is very specific to celiac disease. There are three different antibodies that can show up in your bloodstream. AGA/IgA is antigliadin, a direct reaction to gluten. TTG/IgA is an autoimmune antibody. Sometimes it's positive in celiac disease, but it can also show up in other autoimmune conditions. The EMA/IgA is a second autoimmune antibody, called anti-endomysial. The only time EMA/IgA shows up is in celiac disease so it's pretty much diagnostic.

You will very likely show damage on biopsy. The thing you should know is even if you do not show physical damage, there have been at least two long-term studies of people with EMA/IgA with normal or mild damage biopsies. Almost all of the people with that particular antibody who kept eating gluten went on to have a biopsy with severe damage a couple years later. People in the studies with EMA/IgA also tended to feel a lot better off gluten.

You might read this abstract. At the end it says:

"CONCLUSIONS: Patients with endomysial antibodies benefit from a GFD regardless of the degree of enteropathy. The diagnostic criteria for celiac disease need re-evaluation: endomysial antibody positivity without atrophy belongs to the spectrum of genetic gluten intolerance, and warrants dietary treatment."

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The good news is that you might feel a LOT better once your biopsy is done and you try the diet.

[SueQueBlue]

Thank you for the translation! I guess I should just plan on being gluten free regardless of the biopsy results and make it my new life-style.

My son is a type-1 diabetic, and I do know that celiac can go hand-in-hand with type-1, so I guess I should make sure he gets tested too.

Thanks again!

Susan

[Skylark]

You're welcome. Yes, watching your son for celiac really makes sense. I really hope going gluten free after your biopsy helps you feel better!