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Could this be Celiac without GI symptoms?

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Just a brief family history - my younger sister has been in and out of treatment for different ailments for years now. They tried to diagnose her with celiac but she had already gone gluten free and trying the gluten challenge brought back too many horrible symptoms that she wasn’t able to handle it and didn’t complete it. She’s had gene testing and has the gene for it, but a test has never been confirmed. She reacts so badly from even touching it at times we’ve always just considered her to have celiac. My dad does not have celiac but is type 1 diabetic so I know autoimmune disease runs in the family. I’ve done some testing and know that I have a higher likelihood of getting it but have never been tested. 

About 4 years ago I was sent to the ER for an intense headache And tingling sensation  on one side of my head. I was given an MRI and kept for monitoring. I was then sent to a neurologist for monitoring because after that I would get headaches at the base of my neck and tingling in my right arm. After some research I tried cleaning up my diet and went gluten free just as an experiment. The symptoms seemed to minimize. 

Since then I have been primarily gluten free. When I do have it I often notice a tension in my right arm or pain in my right hand similar to what I’ve read as arthritis pain. I notice that I’m often dizzy. I don’t get many GI symptoms other than intense bloating. Though constipation is frequently a problem for me. 

Recently I’ve begun to wonder if gluten is something I should stay away from simply because I feel better without it or if it is something I need to stay away from for actual medical reasons. I’ve tried reintroducing it this week mostly because I know if I ever need to be tested it needs to be in my system. It’s now been 4 days. So far I don’t have any stomach issues, but I’ve noticed that I’ve had a few headaches, my right arm feels very weak and it is difficult to make a fist because my hand feels inflamed and stiff. Today I noticed my feet were tingling but I don’t know if it was the shoes I was wearing. I also look about 6 months pregnant from the bloating. There are other small random things too that I don’t know how to describe other than it just feels weird and sensitive when my arms or face are touched. 

I guess I’m just curious if anyone else has had any similar experiences and been diagnosed with celiac without any GI issues or other severe symptoms. 

I plan to keep eating gluten for the next few weeks to see how I feel and talk to my doctor if needed. 

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Hello Mmead,

It seems to me that you are at least gluten sensitive. Given your family background, celiac is indeed quite likely. Your neurological symptoms sound really worrying.

You can, of course, have it without GI symptoms, it's called silent celiac. As it is a systemic disease, there are hundreds of symptoms apart from GI ones, ranging from fatigue and depression to peripheral neuropathy, arthritis, fertility issues and skin rashes, so there's no actual rule.

However, intense bloating is a GI symptom. It was one of my first - besides anemia from malabsorption - and lasted for at least one year before I started getting loose stools. Other people get the opposite, constipation, which you also mentioned.

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