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CGally81

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Everything posted by CGally81

  1. CGally81
    Since my symptoms are neurological rather than just gastrointestinal, I don't think it's only "gluten intolerance" instead of Celiac. I'd read about the difference between the two; supposedly, people with the intolerance can handle small amounts of gluten, whereas Celiacs can handle absolutely none. Since I got glutened from amounts of gluten I couldn't see...
  2. CGally81
    Actually, I insisted on waiting until the hunger went away (because it's insane right now, and there's no way I could last an entire day on just water at the moment!) before taking the tests... and the tests are to check for other things, rather than Celiac itself. He wants to rule out other possibilities, and he knows that I'd have to eat lots of gluten...
  3. CGally81
    It happens no matter what I eat. Protein? Carbohydrates? Bananas? Rice? Chicken? Popcorn? Gluten-free Chex? It happens after all of them. It also happens whether I take digestive enzymes (AFP Chewables by Houston Nutraceuticals) or not. It's been worse before, so it might get better. I don't know. I'm hoping so. I get enough water, I think. I'm not...
  4. CGally81
    Perhaps, but I did lose a lot of weight, which I'm putting back on (and I have the hunger to "help" with this), and my symptoms when eating gluten are neurological, not just gastrointestinal. I can't imagine what besides Celiac it could be. I'm also having gluten withdrawal symptoms.
  5. CGally81
    I agree. I still want an official diagnosis, as I feel it will help me later. The immunologist might find out if I react to other things. (From my experience, for instance, I don't react to casein or soy. In fact, the supervisor in my office who has Celiac also doesn't react to those, so we might have been spared in that regard) The official diagnosis...
  6. CGally81
    All this time, I'd been hearing that HLA DQ2 and DQ8 are the genes. Everything is coming back negative, so how do I prove I have Celiac to those whom it matters? My family is supportive of me, yet they're going to be VERY skeptical if every test I take comes back negative. I'd been glutened by accident a number of times from things like rotisserie chicken...
  7. CGally81
    Wait, you were going gluten-free, but had Celiac antibodies? When I got tested, my antibodies were said to be normal. Had you been Celiac for a VERY long time? I'd like to know why nothing was found for me. It's really upsetting to not be able to prove that I have Celiac, even though I've felt what eating gluten did for me and has been doing since around...
  8. CGally81
    I went mostly gluten-free in August (still eating Fudgsicles before I learned that "malt powder" has gluten), and took a test in September that didn't show abnormal vitamins or anything like that. I went totally gluten-free (out went the Fudgsicles) in October. I took a test for antibodies and DNA in late November, and just got it back recently. The antibodies...
  9. CGally81
    You have a good point. Gluten leaks through the intestine and floats around the body, and the immune system attacks it, hitting every organ in the process. That's why one treatment under development, AT-1001, works by having your intestines not "open up" so much to let the gluten out, but just enough to allow vitamins and nutrients to flow through. ...
  10. CGally81
    My doctors have been pretty cool, willing to admit they don't know everything, and willing to recommend me to those who might. My regular doctor admitted to knowing little about Celiac, and referred me to the gastroenterologist. Who in turn would like me to get an endo to rule out everything else even if he knows he can't test for Celiac (due to my refusal...
  11. CGally81
    The vaccine is meant to cause the immune system to stop attacking gluten, and has already proven effective in mice and pigs. It therefore targets the auto-immune disorder itself, not a specific symptom. Anyway, I want answers. I want to know if what I have is indeed celiac, or something different. I can't imagine having the celiac symptoms, triggered...
  12. CGally81
    This is NOT the news I wanted to hear. I had a few blood tests. Antibodies came back normal (though I was no longer eating gluten). DNA results just now came back normal. No abnormally low vitamin levels. Yet, if I eat gluten, I space out, feel like a zombie, lose all my strength, have stomach rumbles that never stop, and have my blood sugar plummet...
  13. CGally81
    From what I know (someone else please correct me if I'm wrong!), Allergies can actually go away as you get older, whereas an auto-immune disorder doesn't. You'd have to wait for a cure to come out for the auto-immune disorder if you want to get rid of it. There's also a difference in symptoms. Celiac's symptoms are diverse, and different people experience...
  14. CGally81
    Oops, that reply was meant for coriforia. But GottaSki, how long have you been going gluten-free? How long did your withdrawal symptoms go on for? This info might help coriforia, and me as well, since I'm still going through the withdrawal.
  15. CGally81
    Speaking from personal experience, I'm going through gluten withdrawal myself. I first went "mostly" gluten-free in early August. "Mostly" because I didn't know Fudgsicles contained gluten, and continued to eat them. My first symptom was extreme, seemingly never-ending hunger. That's (sloooooowly) getting better. But like you, within 2 weeks of going...
  16. CGally81
    I hope not. I'd been eating rice my whole life. The only time I have rice - brown rice - is with some dinners, unless gluten-free chocolate Chex has rice as an ingredient (it probably does), and that I'd have as a snack only on weekdays. I'd have them and not have the headaches, and sometimes I would. In fact, the headaches were less strong today than yesterday...
  17. CGally81
    I read that some digestive enzymes are capable of making celiac symptoms worse if you take them when you eat gluten. Now, I can't swallow pills, so I needed to buy a chewable digestive enzyme. I linked to several in a topic and asked if they were okay, and was told that "AFP Chewables Multiple Protease by Houston Nutraceuticals" would be a good choice...
  18. CGally81
    Good point. Would I have to change anything to get my insurance to see him as my new doctor? Or could I just go in?
  19. CGally81
    I guess so. I certainly have it. Otherwise, gluten wouldn't cause me to feel zombified and spaced out and totally without energy every time I ate it. I've been glutened by trace amounts I couldn't see (think rotisserie chicken). My boss believes that I have it, and a newly hired supervisor has it too, but she wants me to get officially diagnosed, because...
  20. CGally81
    An official diagnosis could help for when treatments or cures are developed, to convince my insurance to pay for them. (Currently, one cure, a hookworm infection that causes your immune system to stop attacking gluten as long as the hookworm lives within you, can cost upwards of $8000) Plus, it would be nice to rule out other conditions that might be concurrent...
  21. CGally81
    Okay, I know I have celiac, because I know how I felt after eating gluten for months before I knew what celiac was. And I knew how much better I felt when not eating it. I self-diagnosed in August, cut back on gluten, and felt much much better. I took two blood tests. The first one was given by a doctor who didn't know that much about celiac disease and...
  22. CGally81
    Okay, I first went "gluten-free" back in August. Except I continued to eat Fudgsicles, not realizing they contained gluten (malt powder, which is apparently less potent than, say, wheat, but was still causing damage without triggering my normal symptoms). In early October, I began to have a strange and disturbing new symptom where whenever I ate food,...
  23. CGally81
    Celiac is becoming more and more well-known, so that's a very good thing. A co-worker told me yesterday "you know the new supervisor they just hired? He has what you have!" I decided to ask him about it. Turns out the guy is, like me, not reactive to casein or soy, only to gluten. He eats lots of dairy products and soy products now, so I imagine he'd...
  24. CGally81
    Wow. Lupus is another thing related to gluten. Gluten is really looking like quite the enemy to humankind. Autism (which I also have), ADHD, Celiac, and now lupus and ankylosing spondylitis! Why do you think she was told to stay off milk and chicken btw? Related to Celiac, or to lupus?
  25. CGally81
    I noticed the book "Gluten-Free Cooking For Dummies" on a coworker's desk, so I asked her about it. She told me that she has lupus. And she mentioned that she went to a holistic doctor and got injected with various things to be tested for what she has a reaction to. She has reactions to wheat, barley and rye (the main culprits), but was also told not to...
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