busyGF

Hi Ginger38, I totally agree with you, I didn't want to go back on gluten for 6-8 weeks for further testing and biopsy either and that was many years ago.  I told him, I can't possibly start eating it again because I had a job to keep, family to support, etc.  I was so thick in brain fog and in an out of the bathroom there is no way I could function for 6-8 weeks like that so I decided to not get any further testing and just become gluten free.  I would definitely like to get the genetic testing for sure as well but I have been living gluten free for 14 years now and it doesn't matter to me what my diagnosis is, I just know I feel much better without eating it and I know it is helping my body by not eating it.

On 8/4/2022 at 9:59 AM, Ginger38 said:

Just curious if anyone else experiences neurological symptoms?? If so what kind??

I have noticed that I sometimes I have trouble finding words or saying the wrong words.. I also have dizziness and I just feel really weird mentally and physically. These spells make it hard to function, walk etc.

It honestly scares me bc it’s such a strange feeling and not being able to find or say the right words scares me. I also have severe anxiety and PTSD , so it could be something to do with that too I guess, just wondering about celiac disease/gluten 

Hi Ginger38,

I know exactly what you mean!  I went through the celiac testing like 14 years ago and at that time they really didn't talk much about any of the symptoms of celiac or non-celiac gluten sensitivity.  It turned out for me since it took like 3 months to get into a GI doctor to get testing and I had figured out in the meantime that I felt better not eating gluten, that since I wasn't eating gluten at the time of my testing, they couldn't say for sure if I had celiac or not but a lot of my markers were high.  Anyway, my biggest complaint besides GI symptoms at the time when I was still eating gluten was the tremendous amount of brain fog, I mean to the point where I couldn't concentrate or even think sometimes and thought I was going crazy.  When I mentioned that to the GI doctor he said that would have nothing to do with celiac or non celiac gluten sensitivity.  Of course, nowadays it is a very common symptom that you have a reaction to gluten.  So you're not alone!  I would get tested for sure.  Also, my anxiety increased a ton during that time of my life with the brain fog so from what I have read, increased anxiety goes along with it.  Hope that helps and you find some answers!