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Found 1 result

  1. Looking for advice. Was diagnosed Celiac 3 months ago with all following details: Gastroenterologist scoping and bloods • biopsy Marsh score 1 no atrophy (lymphocyte count 68/100) • antibody blood test negative • both colonoscopy and endoscopy negative for infections or bowel disease Allergist gene testing and bloods • HLA DQ A*05 Postive • HLA DQ B*02 Negative • HLA DQ B*03:02 Negative • ECP (Esinophile Cationic Protein) 66.7 ug/l which is 4 x baseline level • skin prick test for over 40 allergens including wheat etc all negative Urologist blood tests • extremely low testosterone (almost zero and tested 3 times) • diagnosed as primary low T Symptoms that all creeped up at same time pre diagnosis: • stomach upset, noises, mixed stools • migraines, dizziness, nausea • tiredness, weakness, lethargy • anxiety, depression, no interest • knuckle, hip, back pain • weight loss (7kg pre diagnosis, 15kg post diagnosis) I’ve been eating gluten free now for 2.5 months and taking testosterone gel daily and since 1.5 months been feeling better. However. I’m still having issues. I cannot tolerate any type of synthetic or derived sugars. I cannot eat buckwheat, couscous, yeast, corn, dairy, brown rice, most other non-gluten grains. Can’t do chocolate, tea and numerous other things. When I feel Glutened I can only explain it as a panick attack building up to what feels like an allergic reaction that affects both my respiratory system and nervous system. What I don’t understand is why suddenly if I’m apparently celiac, I’m having so many issues. Some questions I ask myself: 1. I thought the HLA DQ2 + DQ8 was key to being celiac. Why when it’s negative I have the diagnosis? 2. I don’t really understand the function HLA DQ5 - I know it is a positive mutation but I read for other immune disease traits. Anyone enlighten me on this gene? I have little knowledge and my doctor had no clue. 3. My knuckle pain is getting worse and I suspect Rheumatological overlap which would explain an immune issue. Anyone experience or can relate to this? 4. Migraines are coming back after being dormant for 1.5 months. Is this common with celiac? You feel good, it plateaus, then you feel bad again? 5. Any relation to low testosterone? Again, can anyone relate to my story and tests/results? 6. Esinophile blood test 4x normal range. What the heck? I’m only 40 years old and something’s not right even with 16kg weight loss since November 2018. I speak with my doctor and he’s like, be lucky you lost weight you were 106kg which is pretty much over and also remember not to eat gluten. Slightly clueless if you ask me and not helping with my fear that they have missed something. What’s the coincidence that so many systems go wrong at the same time. Thanks for reading my story and if anyone has had a similar experience I’d be forever grateful for some feedback.
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