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Everything posted by Defokus

  1. Would you recommend other tests? Would an endocrinologist be a better option to check all bloods/vitamins/mineral levels? I went to see a celiac specialist on Thursday because it’s not letting up and his attitude was “what do you think I can do for you?” I showed him all my test results and he said 2 things. 1. Not celiac but perhaps gluten intolerance and 2. Psychosomatic follow on symptoms from the intolerance/allergy. He said you changed your diet, you felt better, you know what to do. This angered me because I was looking for reassurance that there’s not something else going on. It’s frustrating being native English speaking in a foreign country. If my German was better I would’ve had a good argument with him. My biopsy showed no villi damage with Marsh score 1. Lymphocytes 68/100. Iga bloods negative. There’s certainly some nervous system issues. For example when all the symptoms come on, I get speech issues like I’m drunk (slurred, weak voice). I even question if it is Celiac.
  2. Thanks! I don’t eat processed food nor gluten free labelled processed foods. I don’t understand why I felt good for one month, then suddenly on the same diet, I’m now having loose stools with indigested food and at times it’s green. Is arm and hand tingling/numbness normal? Also muscles in my back have this feeling like gas is blowing them up like a balloon. The nausea is also awful and it doesn’t help calm down my inner hypochondriac. It really is wearing down menatally. I can’t seem to get out the house for a walk. I just feel drained and really afraid.
  3. Thanks 🙏 do you recommend particular digestive enzymes? Thought I’d ask to save myself using ones that have hidden nasties inside 😉
  4. Really helpful thanks. I also have fatty liver (from years of alcoholism). Been dry for over a year already but it was still fatty pre-diagnosis. my lipase for the last 3 years has always been 5-10 points above the normal range so it’s not like they’re extremely elevated. Really encouraging to hear they can be reduced on a gluten-free diet.
  5. I had a blood test from an allergist and my ECP levels were 3x normal range. ECP differs from standard eosinophil percentage that is common in a CBC blood test. Levels are 66.7ug/l normal is <20ug/l. From what I read this is pretty dangerous and is also a marker for tumours or can cause organ damage. It is also termed as eosinophilia which is quite scary. I couldn’t find anything related to this on the forum which also makes me wonder what is going on. Any advice?
  6. Great article but as a newbie Celiac, another matrix of things to avoid when all I can eat is white rice flour, salad and vegetables. This disease really is a lifestyle nightmare when I have a family of non-celiacs and I'm the breadwinner, who now has to take extra care and time (lots of time) to prepare all my fresh meals. How can one survive when all other proteins that cause cross reactions gluten me. Can't have eggs, dairy, all synthetic and derived sugars. Surely it's a path to other diseases caused by malnourishment - I'm already 16kg lighter in 5 months. I hate my life right now.
  7. Again really useful thanks. I'll look into those flours. I think I have coconut flour but was afraid of another reaction. I just seem to get better, introduce something new, then have to recover. Tough for the sole bread winner with a wife and 2 kids to support and be healthy enough to actually work. The pancreas is an interesting angle. My doctor has been puzzled since my Lipase has always been above normal range for many years. However, I did have an alcoholism history but no longer drink alcohol for over one year now. But that Lipase isn't going down.
  8. Thanks Trent! Oh boy, life sometimes just throws a curve ball - potentially more autoimmune diseases... my knuckle pain has been constant for 4 months now. I guess that's not a flare up. Feeling kinda lost being a Scotsman living in Germany and not know which type of doctor to go to and what other tests I should get. Damn this disease.
  9. Thanks Ennis. Some really good advice. I'm pretty low on Vitamin D, but every time I take any type of supplement I have bad reactions. I even went out my way to find Vitamin D that is organic and has no sweeteners, fillers or any other ingredients other than what is core to making vitamin D. But hey, my body doesn't like it. From my tests all B, E and C vitamins, are in check. My antioxidative stress test was 56 and normal range is under 40. I think because my Marsh score was 1 without villi atrophy, I am still well nourished. I'm slightly getting panicked about what to eat. I mean if I cannot eat any carbs, how does one function? The only carbs that seem ok are white rice flour made into baby porridge and potatoes. I can't tolerate eggs and some fruits so I'm left with eating only lettuce, cucumber and tomatoes (also not much tomatoes)... I feel rather hopeless with this right now. Surely I am going to end up with nutrition problems eating white stuff and salads for the rest of my life. My weight loss is of major concern - people keep mentioning it and also how pale I look - no anemia by the way. This sure does suck big time.
  10. 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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