The Who and When Celiac game

I’m going to talk about my family and who has Celiac and who doesn’t and when did mine trigger.

I have Celiac. I carry 1 copy of DQ2. My husband does not. My children do not have any Celiac genetic variations. I have one boy and one girl.

My sister has the gene too. She has 1 copy of DQ2. Both of her daughters have 1 copy of DQ2. The elder daughter has been diagnosed and the younger has not. The younger does not show signs nor symptoms of Celiac. Her husband does not carry Celiac genetic markers.

For a long time, there has been some debate in my family about where we got the Celiac genetic markers. My Mother has never had the genetic test – guess who is getting 23 and me for Mother’s Day? My Father died in 2002 of a heart issue and so we can’t get his genetics. None of his family have any of these diseases.

So, it is obvious that the genetics came from my mother. My question is, why have my mother and sister never developed the disease? I know lots of people carry the genetic markers and never get the disease. But today, I’m just angry about it. Why did I get this crappy disease and they got lucky and didn’t.

I was looking at my life and tried to decide when Celiac was triggered. I was in high school and had an upper respiratory infection for 10+ weeks of unknown origin. I remember being in college and going out drinking. I always had diarrhea the next day after a night of drinking beer. I called it the “beer sh*ts”. My friends had never heard of nor experienced this. There was a time I was poor and ate pasta every night. I had diarrhea a lot during that time. When I made more money and stopped eating pasta all the time, I stopped having diarrhea. With my second pregnancy, my daughter was growth restricted. She weighed less than 5lbs after 40 weeks of pregnancy. Again, it never occurred to me that I might have a problem with food. I’ve always been talked to about low vitamin B12 and one doctor even recommended B12 shots. I never put two and two together.

All of these things come into focus when looking back on my life. Did I have Celiac my entire life? Thinking about it, probably.

I’ve painted a picture of someone that had clues, but nothing definitive that could point to a disease. It wasn’t until I suggested the doctors run the Celiac panel that I was diagnosed. I wouldn’t have known about the disease if my niece had not been diagnosed in the year before. It just didn’t happen 7 years ago.

Now, doctors are more willing to run Celiac blood tests. They are willing to at least talk about the issues that Celiac brings up. Celiac has over 200 symptoms that we know about and not all of them are gastrointestinal. Just know that, you have to advocate for yourself and a diagnosis. But if you advocate and the tests are negative, you have to be okay with that too.

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