Hello, Traditionally they thought CD only affected the gut but newer studies show there are approximately 300+ symptoms, there are several neurological like you described. I get neurological as well as gut and skin reactions. My mind was so glutened I didn't believe that I had any, now if I get any CC within 5-15 min I get the brain fog, extreme tiredness, vertigo, mood swings, anxiety, depression, panic attacks and other things I can't think of right now and they last about a week. Then a couple of hours later the belly kicks in which feels like the worst food poisoning you can imagine and last until I sleep at least 3 hours later. Luckily the dermatitis herpeformitis cleared up unless I touch gluten then the blisters form.
Since you're pretty much GF already if you really want a Dx, I'd look into testing through https://www.enterolab.com/ since it doesn't required gluten in the system for testing. Another option thats more $$ is gene testing but that doesn't say you have CD just that you have the genes and can develop it.
Edit: you mention sinus pain. I had horrible year round allergies, so bad, people would ask why I didn't get shots and all I could say was the Dr said my reactions weren't bad enough(of course they would clear up on the day of my appt so couldn't prove it). Since going GF my allergies are 98% gone. In the last 2 1/2 years I've had about 5 or 6 "attacks" and most were the day after being glutened.
HI and welcome to the team. Then if I were you then I would stay away from gluten unless you can find a doctor that will test you,
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Since you have gone off gluten, I wouldn't even bother to get tested for celiac even if you do have better insurance in the future. with no gluten in your system, you will probably get false negatives.
to the Team!
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K-my experiences are very similar to yours. I never had gastro sytmptoms, but I have hashimotos thyroid, a lot of sinus problems and food allergies to food I loved to eat! I'm also VERY allergic to tartar control toothpaste now, so some chemical in it started to bother my after using it for years.
My doctor has run tests and found I'm celiac, and from blood tests has found that I have chronic inflammation. By going gluten free for the last few weeks, my morning-tired foggy feeling has drastically improved. My doc said that has to do with blood sugar. I'm doing the clearvite diet now, and have also eliminated all fruit and tea, even decaf from my diet, and I have no fruit juice or anything with added sugar. Its basically a diet of lean white meat, fish and veggies for 3 weeks. By doing this, I'm clearing out my system, then I can add the foods I was previously allergic too (like carrots and bananas) back to my diet.
Because I have Celiac, I probably will never eat Gluten, Eggs, Soy, or Dairy again (I accidently had some at Easter dinner yesterday and BOY did I have a stomach ache even though I never had many gastro problems before), but if I stay gluten free I should be able to eat the food I was allergic too before. My doctor said that will cause my all over inflammation to go down, which should help my sinuses. He also explained how you get new food allergies because you have a "leaky-gut" which causes your autoimmune disease to flare up and it starts attacking everything, even foods you used to be able to eat.
I don't know what tests you can afford on your own, but enterolabs has them all available in kits through the mail.
Welcome Kyork0! Although I have mainly the gastrointestinal symptoms, I also had a lot of joint pain as well as fatigue and generally feeling unwell. Mine is really self-diagnosed(no tests) : no gluten = feeling good, eating gluten = not so good. Will take a look at your blog.
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It was suggested to me last year to try going GF to see if any of my symptoms- sinus pain, "fogginess", exhaustion, moodiness, etc- were effected. I think they were. I then went back on gluten for 4-6 wks and had a horrible time. I went back off gluten again in Feb, with the occasional exposure. Much of what I have read is the gut and belly reaction to gluten. While I have found many resources that link gluten to the things I describe, I am wondering if anyone here has had similar experiences or knows of a good resource for this aspect of the discussion. I am a student so getting tested under my poor insurance may not be possible for awhile, which is why I have been experiment on my own.
I just added a blog to my sparkpage re: my experiences with gluten in the last 7 months. I would really appreciate any insights or suggestions you may have!
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