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OMG you have celiac and can eat gluten? I've honestly never heard of that. I don't have celiac but I have something called Primary Immunodeficiency. I don't make antibodies to viruses or bacteria so I give myself infusions of other peoples antibodies through blood plasma. Some people that have what I have their small intestines act just like having celiac. When you eat gluten the villi goes flat just like people who have it. Many biopsies and other tests and all normal except inflammation. No kidding! I am a foodie and live in an area where the most abundant food and restaurants are all over the place and I just have to bring my own crackers while everyone else is eating the best breads. I also have to be careful of gravies or juices because most are thickened with flour. Because it's the San Francisco Bay Area the better restaurants are getting onboard.
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Gussie, yeah, who would have guessed this. Except that my body reacts differently, no, just flat out bizarrely to lots and lots of stuff. I was 59 when finally diagnosed and by the damage to my villi(90% were flat, the rest damaged) I was gene tested and I carry the both of the top 2, HLA-DQ2 and HLA-DQ8, so I was probably born with it... I am glad I didn't know it as a kid, missing all those 🎂🍪🧁, would have been a great tragedy 🤪.
that's why it took 2 years w/PCP, 2yrs w/Endocrinology, all of which was my vit D was way low, and my PTH was way high/low/high. I was taking 50,000 IU (w/coconut oil gels, vit D must have fats to bind to) 2x week for years, eventually my iron did the same, so I get iron infusions as needed. Endo sent me to GI for endoscopy and they all acted shocked when it came back positive for Celiac w/raging damage. I know I am fortunate with my celiac. I have an aunt who had to split their kitchen in half. Two toasters, two sticks of butter etc. she even has to buy special shampoo, lotion, etc. I think I would shoot myself.
Your primary immunodeficiency is WAY WAY WORSE than celiac.
How was this diagnosed? You said you tested negative for all autoimmune diseases? What tests did you do? If you're willing, would you please explain your results and process? Cuz, I'm really having trouble finding the right answer to what all the IgA, I gG, IgM ECT x 1000, really is. Cuz now I have pSS, lip biopsy positive, but seronegative. RH doesn't even want to answer my questions because of the seronegativity. Yet, everywhere I look I see, after the first AI, beware of the probability of more. Now I have 2 AI, most likely a 3rd-Raynauds and very possibly early Lupus. I understand if you just don't have the energy for a tutorial, I'll take any advice you have. Thanx, Shelley