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susanm

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Everything posted by susanm

  1. susanm
    Hi, I had a negative endoscopy, but have been gluten-free since August 2008. Last week, I started getting a really itchy rash. It wasn't helped by antihistamines and steroids didn't do a thing. I've been looking up pictures, and it seems to be fairly consistent with what the celiac rash seems to be. I have little red dots on my thighs, and my arms and...
  2. susanm
    Thanks for the reality check. I did ask the party coordinator if they could order one piece of chicken not stuffed. If not, I'll just bring my own piece of chicken and eat the potatoes and squash. I understand not expecting people to understand or accommodate us, but if we always quietly eat our own food, how will people ever have any awareness of this...
  3. susanm
    The other night I went to my son's banquet at school for his sports team. It was a salad and pizza party with all gluteny desserts. I brought a fruit salad for dessert. I basically had salad and fruit all night. Now we're having an office Thanksgiving lunch. On the menu is stuffed chicken (why do they have to stuff it??!) and eggplant parmesan (probably...
  4. susanm
    Thank you for printing that for me. I think my adaptive immune system is at work because I also have hypothyroidism and Addison's disease, two autoimmune diseases. I know what he's talking about. Hayfever is probably an innate immune response. However, with my autoimmune diseases, the chronic inflammatory changes, and high antigliadin response on blood test...
  5. susanm
    I'm having trouble viewing the first link you provided. Ohh, there's so much to think about. The more I read, the more confused I am. I'll just stick with gluten-free to be safe.
  6. susanm
    Hi happygirl, I couldn't see the link you sent me, but I did some of my own research. I probably have non-celiac gluten sensitivity (NCGS). I just needed some justification to continue my gluten-free diet and feeling much healthier with it. I know I don't really have to justify it to anyone but myself, but it is a major lifestyle change. I mean, why would...
  7. susanm
    I know I don't react well to gluten. My antigliadins were high. My biopsy was negative, though it showed chronic inflammation. What does this mean? I had a 2 bites of cake the other day and got crampy. Why wouldn't the biopsy show something? He said he took the biopsy from a few areas.
  8. susanm
    I'm newly gluten-free (2 weeks). I went to my son's cross-country meet. They had some yummy chocolate cake. I totally forgot about my diet. My son came over with a piece of cake, and I went "yummm" and took 2 forkfulls of heavenly...oops! Ah, darn it! My son suggested I spit it out, but it was too late, I swallowed it. I don't know if this was a real...
  9. susanm
    I have Addison's disease, so I take hydrocortisone. I asked my doctor if that would affect the biopsy. He told me that in Addison's, I only take enough to live, so it shouldn't affect it (although I'm not so sure about that). Hearing that, it makes me think that taking more steroid would affect the biopsy. I had the endoscopy Monday, and I'm waiting for the...
  10. susanm
    I always thought that the sleepy feeling I'd get after eating was normal "after-eating groggies". Then I started noticing it was only after I had a lot of pasta that I felt like that (which I love!!) Do you mean I really have to give up Starbucks when I go gluten free?? I'm still waiting for the endoscopy, but I know I have gluten sensitivity.
  11. susanm
    I saw the GI doctor yesterday that will be doing an upper endoscopy on me. I asked him about the patchiness of the damaged villi. He said that it's very rare that it doesn't show up in the duodenum, so that's where he'll be taking the biopsy from. Is this correct? Should he be taking it from other spots also?
  12. susanm
    I'm still in the process of getting tested, but my antigliadins came back high. Now I'm wondering. My sister has had a long history of mental illness. She had an ulcer once and she has blood in her stool when she takes an ibuprofen. Otherwise, she has no symptoms - sometimes constipation, but that's it. I know it can be genetic, but would mental illness...
  13. susanm
    I'm new at this, so I might not be the best person to respond. Years ago, I was so bloated. I tried having Lactaid milk instead of regular milk, and that helped a lot. It's possible it's celiac, I don't know. I'm surprised, with your elevated white blood cells, that he didn't do more testing. It sounds like something to get to the bottom of.
  14. susanm
    I would check with an endocrinologist about your adrenal function. The reason I'm mentioning this is the odd tanning or vitiligo that you're mentioning and the fatigue. Do you crave salty foods? How is your blood pressure? Have you lost a lot of weight? If you can say yes to all 3 things, have your adrenals checked out. I have Addison's disease, but I...
  15. susanm
    Frankly, I can't wait to go gluten-free. I'm still eating gluten because I'm waiting for my endoscopy, though my antigliadins were high, I have osteopenia bordering on osteoporosis, I had celiac as a baby, and I KNOW I have celiac now. My brain has been so muddled for so long and I've been lacking in energy for as long as I can remember, that I'm just...
  16. susanm
    Okay, this is going to sound ignorant because I'm still very new at this, but what's wrong with French fries? And what's wrong with ketchup? Fries are potatoes, which doesn't have gluten, right? Other than tomatoes, is there something in ketchup that's a no-no?
  17. susanm
    I have no symptoms currently, but I had celiac as a baby and I have Addison's disease now. I also have osteopenia bordering on osteoporosis (I'm only 53), and I felt lousy after reintroducing wheat into an elimination diet (though no stomach symptoms). I read an article that said you can get other autoimmune diseases if you have hidden celiac disease, so...
  18. susanm
    Hi, here are my test results: Antigliadin antibody, IgG - 64 units (normal 0-19) Antigliadin antibody, IgA, - 41 units (normal 0-19) My doctor is on vacation, but I got a letter saying I "may" have celiac disease and that I should call a GI doctor for a biopsy. I really don't want them to put a scope down my throat, but if I have to, I will. Why...
  19. susanm
    Hi, I'm in the same situation as you, although I'm still waiting for my anti-gliadin test results to come back. I also have Addison's, and I'm 100% sure I have gluten intolerance, whether the test comes back positive or negative. I also have Vitamin B12 and D deficiencies, and I have osteopenia bordering on osteoporosis, and I'm only 53. Also, I was diagnosed...
  20. susanm
    I read somewhere that if you have wine with a gluteny meal, the reaction is 100-fold. I'm newly gluten-free, but whenever I used to have wine, it was usually with a pasta dinner (my favorite). Not only would I feel awful from the pasta meal, but the wine would just knock me out. I thought it was just an alcohol reaction, but now I'm wondering if it's the...
  21. susanm
    I just read somewhere that having wine with a gluteny meal makes the reaction much, much greater. Well, when I have wine, I'm usually at a restaurant eating my favorite food - pasta! When I do have the wine, I feel sooooo sluggish, I just want to lie down the rest of the evening. I thought it was just wine that made me feel this way, but now I'm wondering...
  22. susanm
    I haven't been having any dramatic reactions to gluten, which is why I've ignored it for so long. What I do feel when I have a big plate of pasta is sluggishness, a feeling of fullness that's pressing down on me, and just plain awful and yukky. I don't get stomach symptoms though. Does anybody else feel this way? Could this be celiac? I'm still waiting...
  23. susanm
    Hi, I'm from the Boston area, so I had to respond. While there might be more awareness in this area, you got lucky with your restaurant. A lot of people are still very ignorant about it here. Part of the reason I think there's more awareness here (now hear me out first) is not that there are more doctors here. Nooo, doctors aren't all that aware. It...
  24. susanm
    Hi, I did take a blood test on Saturday. My doctor ordered the anti-gliadin antibody test, so hopefully I'll know for sure if I have celiac. I did have celiac as a young child. Does it always go into adulthood or can one grow out of it? Is there another test (anti-endomysial antibody test) that might be a better marker for celiac? Susan
  25. susanm
    What is the difference between adrenal exhaustion and Addison's? With Addison's, you are exhausted, you crave salt, and your skin gets darker. If you need hydrocortisone to function, it seems to me it's Addison's, but I'm not a doctor. Either way, it seems like some people here have both celiac and adrenal exhaustion, so there is likely a correlation. Another...
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