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I've been struggling with a smorgasbord of symptoms that no one can cohesively diagnosis for for ~10 years. Going *strictly* gluten & dairy free (no cheating) 4 years ago cleared most of it up. Unfortunately, I'm getting worse and only more sensitive to gluten specifically. I could fall asleep at any point and notice several new GI issues that correlate with cross-contamination opportunities over the past year. The migraines, brain fog, peripheral neuropathy, short term memory loss, exhaustion, muscle weakness, and weight loss are real and frustrating. It impacts my quality of life significantly. Then, a glimmer of hope... my 23andMe came back positive for a celiac marker (HLA-DQA1). Everything made sense, even though doctors over the past several years have said it's not worth looking into. I'm tired of doctors telling me it's in my head and to talk it out and am definitely gunshy to go back to doctors.

Based on my reaction to cross contamination, there's no way I can do the gluten challenge to get a formal diagnosis while functioning fairly normally. I had long-term cross-contamination exposure after eating food that was supposed to be gluten free, and I nearly lost my job because of how much it effected my ability to work. I can guess that if I ingested gluten for 8+ weeks as recommended, I estimate it would take 5-6 months to get back to 90%. Is getting a formal diagnosis worth it, or should I just operate as if I have celiac and not bother?

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Hi Filmnut,

Some people want the diagnosis, but to others it doesn't matter.  I am not officially diagnosed myself, but I know how gluten affects me and am not willing to go through the full diagnostic process.  I know I can safely eat gluten foods, so there's no point in setting my health back just to get a DR's approval to be gluten-free which I already know I have to be.

 

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Unfortunately, about 30% or more of the population has the celiac genes.  Gene testing is typically used to rule out celiac disease.  Testing for antibodies and intestinal biopsies is required if you want a formal diagnosis.  

What is concerning is that you said you were strictly gluten free and yet you are still unwell.  That makes me think you have something else going on (e.g. Crohn’s, SIBO, etc.).  You should see if you can get to a Gastroenterologist.  

Another  possibility is that you are still getting gluten somehow into your diet.  Do you eat oats?  Ever go out?  Verify every medication?  Avoid processed foods? 

Consider the Fasano diet for a few months.   If it does not work, gluten may not be the only cause for your symptoms.  Let’s say you have celiac disease for sure, your odds of developing more autoimmune disorders is strong. 

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      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
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