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Coeliac Disease Query


michael

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michael Newbie

Hi.

I was blood-tested two years ago and was found to positive for antibodies to gluten. The hospital consultant said that no blood-test can ever be 100% accurate and that I should also have a gut biopsy taken. I had this done and was subsequently told by the specialist that the results were negative for celiac disease and that my symptoms all added up to IBS. I have had all kinds of symptoms over the years, sometimes acute bouts of diarrhoea, but predominately constipation. I sometimes get stomach cramps/bowel spasms/wind/nausea, which is usually followed by needing to go the toilet quite a few times. The gassy pain usually improves after that, although it usually takes a couple of days for the pain to have completely gone. Without wanting to go into too much detail, most of the times I empty my bowels, I pass hard, pellet-like stools, which quite often have mucus in them (well, I guess I did go into detail after all!).

I also suffer from anxiety/depression and have been taking 20mg anti-depressant daily now since the beginning of 2000, so I can understand why IBS was the end diagnosis. But I have since been told by someone from the Coeliac Disease Society that it is possible that my biopsy results were fine because the disease was in the early stages and therefore no damage had been done by then. She said I should ask for another blood test and if it is positive again, I should have another biopsy done. She also said that it was possible that my blood test results were wrong in the first place.

I haven`t changed my diet at all and still eat foods containing gluten.

I would appreciate it if anyone has any thoughts, suggestions, ideas.

Thanks in advance,

Michael


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tom Contributor

I thought there was a difference in the set of anti-bodies for celiac vs gluten-intolerance.

There are ppl who frequent this forum who know the specifics. Or just search for IgA and/or some of the other terms.

There is a genetic test. Either the celiac genes are there or they're not.

If they are, you'll be glad u didn't wait for a positive biopsy. Your symptoms are bad enough already. I had what seemed like crippling tho sporadic cramping and spasms until i stopped all gluten.

lovegrov Collaborator

If you're still suffering I'd redo the tests. The blood tests are rarely false positive, meaning the odds are high that you DO have it. It could be you were in the early tages of intestinal damage, or even possible the damage was there but the samples the doctor took were from undamaged areas.

richard

Guest jhmom

If you decide to go through with the testing and they come back negative and you are still suffering you could always try the gluten free diet for a couple of months to see if you notice an improvement.

All of my blood test and biposies were negative then I was tested through Enterolab and received a positive dx. I started the gluten-free diet and could tell a difference within a few days.

tom Contributor

I too was a ton better w/in just a few days of 100% gluten-free.

Try it !

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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