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CMCM

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Everything posted by CMCM

  1. CMCM
    It became pretty obvious to me that going the typical doctor route, HMO or not, was going to be a long, expen$ive road moving from clueless doctor to clueless doctor, and all sorts of expensive tests. You could be traveling along that road too as you try (mostly likely unsuccessfully) to get reimbursed for non-standard testing at places like Enterolab. ...
  2. CMCM
    Omigosh, this is an interesting discussion! I'm of Swedish descent, am somewhat fair, but I've had this maddening redness (comes and goes) forever....not raised bumps or anything like I've read characterizes Rosacea, but just RED, like sunburn. My husband always worried it was related to high blood pressure (which I have), but when I cut out gluten it got...
  3. CMCM
    Gosh darn, my last comment seemed really negative, didn't it??? Well, all I can say is DOCTORS DESERVE IT!!! :lol: :lol: :lol:
  4. CMCM
    Ha ha ha, yep, what else is new???? We've really got to stop expecting much from doctors....we're brought up to think of them as some kind of all knowledgeable "gods", but they sure aren't! The fact is, they study general things, sometimes very specific things, but overall, they aren't particularly knowledgeable about all things as we expect them to...
  5. CMCM
    So I went to a restaurant tonight...I asked the server to check with the cook about whether or not the veal piccata contained a wheat ingredient....she came back and happily told me that NO, there's no wheat on the chicken, only a bit of white flour dusted on the veal before cooking. Sigh...I had to tell her that the white flour is made from wheat!!!...
  6. CMCM
    Welcome to the clueless doctor club! What doctors DON'T know can definitely hurt us all! While doctors tend to be quite clueless about celiac disease....at best they know only of the most extreme symptoms.....even MORE doctors are entirely clueless about the whole syndrome of gluten sensitivity. Many many knowledgeable researchers are pushing for re-naming...
  7. CMCM
    I definitely saw a hair difference after 6 to 8 months without gluten or dairy. In particular, a year ago I had really noticed my eyelashes had thinned out, but now they are noticeably thicker...much more so. I have also been taking Omega 3 capsules, also magnesium, so maybe that has something to do with it too.
  8. CMCM
    Good grief, what is this doctor thinking? Your celiac situation has been established....how on earth could provoking intestinal damage AGAIN lead to diagnosis of other sensitivities? Remember that you will be damaging tissue and organs as well as the villi damage. This is idiotic. Have you been tested for casein intolerance? In addition to the...
  9. CMCM
    The consensus of those "in the know" is that mere gluten sensitivity is NOT to be dismissed or taken lightly. Many doctors feel the syndrome should ALL be designated as gluten sensitivity, with celiac disease merely being a small subset of this. Gluten sensitivity can cause all the same symptoms/discomfort/sickness etc., and it can even cause intestinal...
  10. CMCM
    I'm appreciating all your replies on this. As for my son, he had a celiac blood test a few months ago....negative. So beyond that, he has just had the gene test. We've seen several ophthalmologists over the years. He went to a chiropractor too. Nothing ever helps, it's just the weirdest thing. No one can ever find anything, so of course they say it...
  11. CMCM
    I asked a ton of questions (replying to my results email), and I was always answered in detail by Phyllis, the R.N. I had assumed that she either had the knowledge herself, or if necessary asked Dr. Fine, in order to answer my questions. She really helped explain and illuminate whatever I asked.
  12. CMCM
    My understanding is that the presence of the IgA (antigliadin) antibodies PLUS the anti-tissue transglutaminase (ttg) are the "gold standard" for confirming a diagnosis of celiac disease in a blood test. Because of the shortcomings of blood tests (the villi damage must be fairly total for these antibodies to actually show up in the blood), Dr. Fine at Enterolab...
  13. CMCM
    In the new book I am reading, "The Gluten Connection" by Shari Lieberman, she very positively discusses Enterolab's testing options. Another thing discussed is the great difficulty in diagnosing gluten sensitivity with blood tests....that you have to have fairly good villi flattening to produce the antibodies which show up in the blood tests. She says blood...
  14. CMCM
    Well, we've gone thru so many things with my son. He had headaches at a young age....at around 6 he had a cat scan to be sure there was no brain tumor or anything. He had a kind of tic with his eyes when he was in the 9, 10, 11 age range...I even researched tourettes to be sure it wasn't that....we also checked out the idea of TMJ (he even had a mouth...
  15. CMCM
    My 21 year old son has complained of pain behind his eyes since he was around 6 years old. I've had everyone check him out....no one can find any reason for this. I just had him gene tested (a recent blood test was normal). He has my celiac gene, and a gluten sensitive one from my husband. I'm wondering if ANYONE out there has ever heard of eye aches...
  16. CMCM
    My mom has celiac disease. I got gene tested and found that I not only got the celiac gene from her, but a gluten sensitive gene from my dad (who died in 1989 of cancer, and in retrospect, he had some related symptoms, although not the same ones as my mom). I just had my son tested, and he got my celiac gene AND a different gluten sentivite gene from...
  17. CMCM
    A year ago when I was starting to put two and two together, I also remembered doing the Atkins diet several years ago....not my usual way of eating with so much meat etc. But the interesting thing was....I felt fabulous, and I lost weight very easily, and all my digestive problems evaporated. It wasn't until later that I realized this was because on Atkins...
  18. CMCM
    Since I got a celiac gene from my mom and a gluten sensitive gene from my dad, I knew my son would be given one of these. I had him tested and guess what.....he got my celiac gene, and from my husband he got a gluten sensitive gene (a different type than the one I have). So now we don't know what my husband's 2nd gene is....but at the very least, he has...
  19. CMCM
    I guess I missed the intitial COUGH portion of this discussion, but I've got some stuff to add. In addition to my ongoing digestive problems, in my early 30's I started having unbelievable coughing problems. Also a kind of shortness of breath....sometimes I'd feel like someone was sitting on my chest. I'd get a horrible cough that would persist for months...
  20. CMCM
    Jerry, I had the full Enterolab panel AND the gene test. My results were interesting....a celiac gene, a gluten sensitivity gene, the transglutaminase score was 19, which indicated autoimmune activity, but my malabsorption score was 67, entirely normal. I also showed a score that was indicative of casein sensitivity as well. I asked a LOT of questions...
  21. CMCM
    Well, I just read in my newest celiac related book, "The Gluten Connection" by Shari Liebermanm, published 2007, the following information: "The gluten problem touches FAR MORE of the U.S. population than the 1 out of 133 who have celiac disease. Some researchers now speculate that as many as 29% ....almost 3 out of 10 people....are gluten sensitive...
  22. CMCM
    Absolutely.....gluten reactions do NOT have to be digestive in nature. If you read the book "Dangerous Grains", it has a list of over 200 symptoms that are often a result of celiac disease or gluten sensitivity. The majority of these 200 symptoms are not digestive in nature! The problem with doctors and their feeble attempts to recognize celiac disease...
  23. CMCM
    I suggest you go over to Amazon and order the book "Dangerous Grains"...about $10. You will then understand what gluten does to people and why it's GOOD to never eat it. I have just recently read a newly released book on Celiac disease, and it mentioned that it is now thought that perhaps 80% of Americans are gluten sensitive...to varying degrees. Celiac...
  24. CMCM
    Teresa....my doctor did the usual celiac blood test on me and also said I don't have it. Maybe I don't, but my mother most definitely has it. My symptoms weren't classic like my mom's....I didn't lose weight, and I didn't get violently ill from it, but I was still sick a lot with all sorts of digestive woes and D, sometimes C, sometimes dizziness, sometimes...
  25. CMCM
    It's definitely NOT in the interests of big pharma that people find simple, nutritional solutions to medical problems. Just go spend a morning sitting in a doctor's waiting room..... There's a steady stream of pharma reps coming in to push various drug solutions and give samples (and mostly like incentives) to the doctors to get them to prescribe them....
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