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mamatide

Ok, So Am I Celiac Or Not?

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First a little background. My 5yo dd is probably Celiac. She was failing to thrive, had every symptom in the book: big belly, sore belly, pale loose stools, nasty disposition, pale, unexplained anemia, skinny. We took her to the doctor because she was getting too old for a toddler belly. Bloodwork was "positive" for Celiac, he recommended a biopsy but it took almost a year for that so we went gluten-free with astounding results - complete reversal of all symptoms and one year later has grown 3 inches and gained 6 lbs.

So I begin wondering about myself. I looked like her when I was little, have had a bad and noisy stomach for ever, never really liked bread that much... perpetually bloated. So I get bloodwork done. Negative. Meanwhile we're going gluten-free in the household for dd. I eat something glutenated every day waiting for the tests - one 6" sub or two donuts or a hamburger. I have a biopsy and have (" a surprisingly high number" of) samples taken. GP says tests are negative.

But I find that I am happier (disposition) and less depressed when I don't eat gluten. And since I work FT at home, gluten's hard to come by so I don't eat gluten. The gloom lifts and life looks brighter. The bloat is gone. I fart less. My hair stops falling out by the handful. I bruise less.

Yesterday at a kids' birthday party I ate 2 or 3 sandwich quarters. Yesterday evening I was tied the the toilet with you-know-what and an incredibly sore bottom.

So what am I? Celiac? Intolerant? If I'm Gluten Intolerant and I eat gluten, am I doing damage to myself or just causing myself discomfort (without any long-lasting damage)? Where do I fall on the spectrum? Is there a spectrum? What is gluten-intolerance anyway? Bad symptoms without the intestinal damage?

Should I ask my GP to have my biopsy results read by a specialist (I don't think they were)? Since I was gluten lite at the time of my biopsy, maybe it's more difficult to read the results? No sense getting another biopsy done since I'm essentially gluten-free with the exception of eating out from time to time...

Thanks for your input.

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Well, considering how much better you feel on the gluten-free diet, does it really make a difference what the tests say? Many get negative test results even when the diet helps immensely. The diet is after all the best diagnostic tool we have.

From what you describe, I think the chances that you are at least gluten intolerant is very high. Consider yourself incredibly fortunate if there's no damage, but even when there is, the tests don't always pick it up. Plus as you seem to suspect, doctors don't always know how to interpret the test results either.

I'm so glad you found something that helps you. For me that is the bottom line. I never bothered seeking any "professional" diagnosis.

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I think it is important to take gluten sensitivity just as serious as celiac disease. Just because most of our medical establishment doesn't, doesn't mean we have to be just as foolish. Your body has proved you with the answer, listen to it! :)

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