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Genetic Question

2 posts in this topic

I'm new here. I was diagnosed about 2 weeks ago. I've been trying to do research on my own, but most of what I find is written for healthcare professionals and difficult for me to understand. I feel like a complete idiot trying to understand the genetic science part of this. If someone can answer in simple terms, I would very much appreciate it :)

One of the many tests I underwent was the genetic marker test. I was told I tested positive for both Celiac genes (DQ2/DQ2).

I have 2 sisters (one who was diagnosed with Fibromyalgia 10 years ago) and 2 children (boys, ages 11 - autism spectrum and tall, but very underweight and 9 - no noticable celiac type symptoms). All of them either have just been tested (waiting on results) or will be tested shortly as my GI recommended.

My questions:

Knowing that I carry both genes, if their tests are now negative, what is the liklihood that any of them will "someday" develop Celiac? How much does the possiblity increase knowing I carry both genes? How often should they (especially my kids) be retested?


Edited by shelly40

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30 percent of the North American population is estimated to carry the gene, only 1 percent will actually develop the disease, therefore even if they have the genes it is not diagnosis. There are studies that have shown that anywhere between 20-45 percent of people with a first degree relative that has celiac will also have the disease. I would say the biggest cases would be your sister as she already has another AI (one commonly attributed to celiac, we have many members that developed it from being undiagnosed) and your son with autism. The good news with your sister is that if she does have celiac we have had many members who had their symptoms improve or even diminish off going gluten free.

Either than that it is all just a guess, you know the symptoms and how they can be non intestinal so keep an eye on your kids, if symptoms start developing retesting would be in order.


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