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CMCM

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Everything posted by CMCM

  1. CMCM
    Good news for you! But first the story: My mother nearly died from undiagnosed celiac disease in 1967. Most doctors knew virtually NOTHING about celiac back then. One doctor thought she might have tropical sprue, but when she said she had not gone anywhere in the tropics that doctor lost interest. She got worse and worse, and they insinuated it was all...
  2. CMCM

    Rice? !!!

    CMCM commented on Geoff01's blog entry in Geoff

    Rice is starchy. I've found that I have a LOT of problems with starch in general....potatoes, rice, and I have issues with the gluten-free baked goods due to their use of various starchy ingredients (potato starch, tapioca starch). I can get by if I eat only small amounts of starchy things, but if I eat more than just a little bit or if I eat such things...
  3. CMCM
    Canyon also makes a line of breads made with wheat. I see them in Whole Foods, sitting very close to the gluten-free line, and the wrappers look quite similar. I've almost bought them by mistake.
  4. CMCM
    People have mentioned self administered test kits....are they accurate or reliable? If so, can anyone recommend what is good and where you might get them?
  5. CMCM
    You get one gene from each parent. You could get a celiac gene from your mother, but a non-celiac gene from your father. However, if you get a celiac gene from each parent, you are a double celiac. In my family, my mother and my nephew are both double celiac, and both get extremely sick immediately from any gluten exposure including an imperceptible...
  6. CMCM
    Well, I had numerous blood tests for celiac yet I never got a positive reading. Same with my son. I eventually got a stool test from Enterolab which they claimed showed evidence of celiac reactions....I've never known how reliable Enterolab's test is as it has been disputed, BUT....I then did the gene test and learned I had my mother's celiac gene plus a...
  7. CMCM
    I think it varies from person to person. My mother was a double celiac and if she got even a smidgen of cross contamination in something, her reaction would be within the hour of eating it and she'd be horribly sick for a couple of days. For me, I can feel sick fairly quickly, but sometimes my reaction can be 4 or 5 hours later. My son gets a reaction...
  8. CMCM
    I can get mouth sores within an hour after getting some gluten accidentally.
  9. CMCM
    I am also dealing with the neuropathy....feet and toes mainly, but also some numbness going down my right leg. All my blood panels, glucose etc. come back normal. I realized this had started in a much milder way back before I was diagnosed, in early 2006. Perhaps 8 to 10 years prior I'd had little symptoms, but didn't know it was neuropathy. After diagnosis...
  10. CMCM

    ARCHIVED Corn

    CMCM replied to w8in4dave's topic in Coping with Celiac Disease

    I have also come to realize I have major issues with corn. I always knew it upset me and was careful with it, but now it's really a problem and I'm avoiding it as well as gluten. In fact, I have issues with pretty much all grains. I get away with occasional brown rice, but don't eat much and I eat it quite rarely. But all other grains are problematic...
  11. CMCM
    My mom, as it turns out, has two celiac genes. She probably had mild evidence of it from childhood (she remembers health issues, but nothing horrible). At 46 (this was 1968!!) she had to have a hysterectomy...and that triggered her full blown celiac. Over nearly 2 years no doctor could figure her problems out....they mostly told her it was "in her head...
  12. CMCM
    I spent my first 55 years thinking I had serious tolerance issues with dairy. Although my mom had been diagnosed with celiac disease 40 years ago (she nearly died from malnutrition before a bright doctor recognized and diagnosed her), my symptoms were not like hers so I didn't think I had celiac disease. When I got sick myself (still somewhat different...
  13. CMCM

    ARCHIVED Olive Garden

    CMCM posted a topic in Gluten-Free Restaurants

    We went to Olive Garden last night. They had a limited gluten-free menu including a pasta sauce on rice noodles, but other than that mostly grilled steak, chicken, salmon and veggies. I got a mixed grill (chicken and steak) plus veggies which were asparagus and summer squash. It was really good! Of course, their menu had the usual disclaimer that they...
  14. CMCM
    This really is important for all of us. I had a comprehensive bone density test at age 49 and they said I had osteopenia at that time. I didn't realize I had celiac disease until about 6 years later and realized the connection between the two. This is another argument for earlier testing, before bone loss can occur.
  15. CMCM
    Let me give you a very reassuring reply. My mom was very very ill and nearly died from undiagnosed celiac disease when she was about 46. At her time of diagnosis she weighed 85 pounds or so and her intestinal walls were smooth as a billiard ball, no villi left, and even her stomach was a mess. So she went gluten free, carefully so because with even the...
  16. CMCM
    I've read a lot of things lately suggesting that the oat protein is problematic for celiacs more than some people are trying to make us believe. I love oatmeal and tried various gluten free versions, but I did have problems, and especially if I had oatmeal several days running. Not as bad as gluten, but they definitely bothered me.
  17. CMCM
    Can anyone explain more about the above? Celiac disease runs thru my family. My mom has double celiac genes. Many in my family got tested via Enterolab. We want to find out what my father's 2nd gene was (from my test we know one of them...DQ1 0604, which is a gluten sensitivity related gene), and my sister got a gene test thru Kaiser, which would hopefully...
  18. CMCM
    It's really quite amazing how many people (who have no "issues" or at least who think they don't) are totally insensitive and uncomprehending and unempathetic about it. Forty years ago when my mom was so sick and as yet undiagnosed (because so few doctors knew anything about celiac disease), she had a whole string of doctors who told her it was in her head...
  19. CMCM
    A few comments on my experience. I was very sick by late 2005, at which time I was 56. Things were heading towards a crisis level, and as I researched symptoms I was led here and other celiac related places. Despite having a mother who nearly died in her mid 40's from undiagnosed celiac disease (she was down to 85 lbs, couldn't keep anything down, and...
  20. CMCM
    Enterolab testing was useful for me because I had minimized gluten to the extent that I couldn't/wouldn't get anything definitive on a traditional blood test. What the Enterolab testing told me was this: that I had a celiac gene and a gluten sensitivity gene, that my tests showed reactivity, that I am casein sensitive, and that no sensitivity showed up for...
  21. CMCM
    I absolutely believe your symptoms CAN vary. Mine certainly have! I think possibly the variety of symptoms I experience have something to do with the nature of the food I eat, things in combination, and it's not strictly due to gluten, but rather gluten AND other things I'm sensitive to. I can get gas, or the big D, or heartburn, or joint pain, or sometimes...
  22. CMCM
    I also had trouble with the "Think Thin" bars. In fact, I have trouble with ALL bars so I no longer eat them. As for your calories/weight loss, this was also the case for me. I really can't eat as much as I used to, and even 1600/day is too much for me. In addition, through the 5 years since realizing I had gluten issues, I have learned that the list...
  23. CMCM
    I wish I had a "magic bullet" bit of advice....but it took me a certain length of time to come to terms with how I have to eat now. I eventually reached a place where I know exactly what I can eat to feel well, and I've made peace with that. As a former emotional eater, that was hard to break but I think you'll eventually get there. I think it all changed...
  24. CMCM

    ARCHIVED Glutened

    CMCM posted a topic in Coping with Celiac Disease

    We ate out last night. After being assured it was gluten-free, I ordered chicken piccata, which came with some veggies and a small salad. An hour later I was all bloated and had horrible heartburn, felt horrible. I don't trust any restaurant any more. They'll tell you anything. Then today I had an allergic reaction with hives. I don't think this has...
  25. CMCM
    After 55 years of digestive issues, then figuring out I was celiac, then being relatively free of gluten on and off (but lots of slip-ups due to non-acceptance on my part), my symptoms became more varied, and not just limited to digestive reactions. After a 3 week binge of having some gluten here and there, one morning I woke up with hands/joints so sore...
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