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mmm1017

Very Confused

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I was grain free for a month before seeing my GI. She asked me to eat as much bread as possible for 2 weeks, then go in for the blood test and biopsy (same day). The IGA was negative, but the biopsy showed atrophy in the villi "consistent with Celiac". She showed me photos from the biopsy of the cracked riverbed appearance and the scalloping. So my diagnosis is "consistent with Celiac Disease". Tomorrow I have the Prometheus Celiac Plus test done as confirmation. Does this make sense? I thought the biopsy was supposed to be the gold standard for diagnosing Celiac. I want to have the Genetic testing done, then on my children. I have an 8 year old with Aspergers and a 15 month old that was diagnosed Monday with "failure to thrive". If I'm positive, they'll take the genetic test too. Regardless, I'm trying to turn the house gluten free anywany. My husband is allergic to wheat and noticed he doesn't have heartburn when he eats gluten-free.

So why is the biopsy not enough?

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The biopsy should be enough...usually people get the bloodwork then the biopsy. But it won't hurt to get the blood tests done anyway so you have a baseline to see if your antibodies are going down on the gluten free diet. You could ask your Dr. if it is absolutely necessary if you don't really want the blood tests done. You are definitely Celiac with the kind of damage you describe that was observed on the biopsy. Failure to thrive is a warning sign for Celiac..but then you probably already know that. Good luck to you and I think it is wonderful that your husband is happy to give up wheat...it will make things so much easier if everyone is gluten free. Hope you are able to get the children tested. I thought Failure to thrive would be an automatic red flag to test for Celiac?!

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I don't think the genetic test is necessary at this point. You have a firm diagnosis from the biopsy. Besides, the gene test can't rule in or out celiac. There are people that have celiac and don't have the most two common genes associated with it. If you do have the associated genes, that doesn't mean you will develop the disease, just higher risk. I have not had genetic testing done and neither have my two boys. I was positive on blood work and biopsy. My youngest son was positive on the IgA tTG test and I opted out of a biopsy. It may be helpful in his case to get the genetic testing done at some point, since we did not do the biopsy. I definately won't bother getting it done for the oldest son because he has been negative on all blood work for the past three years and negative on biopsy two months ago. He is doing a trial of gluten free to see how he does. So we have two celiacs and one gluten intolerent person in our house.

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There are other things that also can cause villi damage.

My question is: Has the biopsy enough accuracy to determine if the damage is caused by Gluten or another cause ??

Or, is the Celiac blood panel a more reliable answer ??

Thanks.

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There are other things that also can cause villi damage.

My question is: Has the biopsy enough accuracy to determine if the damage is caused by Gluten or another cause ??

Or, is the Celiac blood panel a more reliable answer ??

Thanks.

Celiac symptoms, positive celiac blood test, positive biopsy, positive response to the diet - in my book that's enough, although Dr. Fasano has now thrown it out there that a positive genetic test is another important piece of the diagnostic puzzle if any of the others is negative - in other words he says four out of five should be positive.. I am puzzled as to placing reliance on the genetic test since such a large percentage of the population carries the genes they test for.

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