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FAQ: Celiac Disease vs Gluten Intolerance

March 21, 2012

Q: Since Joseph can’t eat gluten, does that mean he has celiac disease?

All we know for sure is that Joseph has gluten intolerance/sensitivity. Through an elimination diet, we determined that he had symptoms after eating gluten (crankiness probably caused by stomachaches, and flaring up of eczema) that went away when we took it out of his diet.

Two main causes of gluten intolerance is wheat allergy and celiac disease. An allergy would mean that the body is attacking the gluten as an invader. There is a possibility of growing out of this. In celiac disease, the presence of gluten triggers the immune system to attack the lining of the small intestines. There is no cure, and no way to grow out of celiac disease. In addition, there are many people who react to gluten that don’t fall into either of these categories. Since we haven’t done any testing, we don’t know which bucket Joseph falls into. But we certainly hope it’s not celiac disease.

We do plan on having him tested soon, though I do not want to do any biopsies, which is needed for a diagnosis of celiac disease. Also, because we’re already on a gluten-free diet, his results may not give good results. So we’ll see what happens as he grows older.

2 Comments leave one →
  1. April 4, 2012 1:30 pm

    There is a gene test that you can do without being on a gluten containing diet, but the blood test and/or biopsies are mostly worthless if he isn’t eating gluten. I had gone gluten free and then poisoned myself for eight weeks in order to have the blood test (negative) before diagnosing myself with gluten intolerance (my gene test was also negative and after the fight I had to put up to get the blood test I skipped the biopsy). [I’ve heard various amounts/lengths for the ‘gluten challenge’, anywhere from 4 slices of bread per day for 8 weeks to just enough to have a physical reaction – I’m asymptomatic so went with the equivelant of 4 slices a day.]

    Oh, and recently the biopsy has become much less of the standard for diagnosing CD – if your blood test is high some doctors now consider that enough and skip the biopsy – however, the reverse is not true, if your blood test is negative it doesn’t rule it out, it just makes it much less likely. (I’ve read it is estimated that 5% of celiacs lack either of the ‘official’ celiac genes so the gene test can provide a false negative as well.)

    • April 4, 2012 6:57 pm

      I’ve heard of the gene test. I’ll see what the allergist thinks when I take Joseph in soon. It really is too bad that you have to eat gluten before testing for it in order to get a good reading.

      Good to know about the biopsy though. Thanks for letting me know!

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