22q And Stomach Issues


For those of you who really know me and know about my past, I was sick for a long time. We knew that I had 22q Deletion Syndrome so we wondered if it had to do with that. I still remember it very clearly that I was sick almost everyday and had a very hard time eating. I still do have a hard time eating, but it's not as bad. Because of being sick I went to many doctor appointments and talked to more doctors than I can count, to help me with my sickness. I would throw up every single morning, and go almost days without eating. The smell of food made me nauseous in the morning. I will tell you it was not fun being sick and it was a long journey finding out these stomach issues.

Throughout the years I have followed 22q communities on Facebook and I have seen lots of people comment about having stomach issues very similar to mine. So I will go on about my story of being sick. So as time went on when I went to many doctor appointments and hospitals trying to figure out this bad stomach and not being able to eat problem. Eventually, my Mom really wanted to get to the end of this and she decided to take a big leap of faith and have me go on a gluten and dairy free diet. My Mom had already been on this diet for about a year or so before she had me go on it. I didn't think it would work but at this point I was willing to try anything just to feel better. Because at that point I lost about 14 pounds in about a month and was in bed. My parents said I was turning grey in bed, very sick. So I started the diet and by the second week I was feeling much better. I was able to eat more and as you can imagine I was feeling happier too.

So my point in telling about this story. I do already have a blog post talking about this story but I wanted to make a new blog post about it. For those of us who have 22q Deletion Syndrome, a LOT of us deal with stomach issues and don't know why. I have seen many people comment even in the 22q Deletion Syndrome communities on Facebook that their child with 22q is very sick and not able to eat. This just makes me think, what if people with 22q Deletion Syndrome have a food intolerance to gluten and dairy? What if one of the big reasons why we are sick is this. My reason to write this is to save many people from the sickness that they could pass if they read my story. I just want to make people aware that people with 22q may have an intolerance to gluten and dairy that the doctors haven't figured out yet.

As I mentioned up above it took me until the second week to feel better. So it does take time, but it is worth it. Being gluten free and dairy free isn't all that bad. Obviously, there are some things you wouldn't be able to have but there are lots of good gluten free and dairy free recipes out there. Even if you just gave up gluten it could help you tremendously if you are like me with the stomach problems.

If any of you have already tried this, I would love to hear you story and struggles. I hope this helps you. So as I said earlier, maybe we can figure out some of the reasons why people with 22q have stomach problems.

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