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Celiac Disease

A MyFibroTeam Member asked a question 💭
Toronto, ON

Anyone here been tested and positive for the Celiac gene?

December 14, 2018
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A MyFibroTeam Member

The biopsy is not the only way now. Ninety five percent of people with celiac have this gene. I'd rather go with the stats than deny it isnt right. Once you've gone off gluten, you will notice changes. Then when you accidentally get glutened you have a true picture of what it does to your body. My daughter and I get headaches, swollen tongue, face, and limbs. It hits us FULL BODY. Not just our gut.

December 14, 2018
A MyFibroTeam Member

I have celiac and it stinks. Especially this time of year because it means meals with others and eating out with much older family members

December 20, 2018
A MyFibroTeam Member

I had the biopsy last summer. Turns out I am negative, which is a huge relief. I really need fibre in my diet and try to eat a plant based diet as much as possible, but whole grain bread really helps wth constipation, as does high fibre cereal.

December 18, 2018
A MyFibroTeam Member

My doc ran genetic tests for a variety of things. I have one of the genes for Celiac. This does not mean that you have it, but if you have symptoms it could mean you do. The only way to confirm this of what I understand is through a biopsy of the intestines. But this could also have a false negative if you are on a gluten free diet. You have to be on a gluten consuming diet for either the blood test or biopsy to give an accurate reading. The genetic test is a blood screening. See if your doc will order it. Best of luck 💕

December 14, 2018
A MyFibroTeam Member

Thanks everyone. I think I will ask the doctor about the Biopsy as the blood test is pretty unreliable. I certainly have many of the symptoms for gluten intolerance or Celiac and I want a definitive answer more for my kids so they are aware of risk factors, particularly if one has a first degree relative with this disease.

December 14, 2018

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