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CMCM

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Everything posted by CMCM

  1. CMCM
    I don't know why so many of us (I'm including myself) want so badly to have a doctor confirm our diagnosis...we want someone who knows little or nothing about celiac disease to tell us we do or don't have it! Why is this? When I demanded a traditional celiac disease blood test from my doctor, after a lengthy conversation with him, he said "Well...
  2. CMCM
    OK, I wouldn't normally have brought this up, but I got a clue the other day about "transit time." I saw what looked a bit like blood in the stool and nearly panicked, then I started thinking about it all, what I had eaten the last couple of days, and I realized that the day before yesterday I'd had a beet salad...lots of red beets in it. Two days is...
  3. CMCM
    I don't know why so many people balk at testing out a gluten free diet......it's not like you're taking a dangerous drug or anything. Just a couple of weeks, a month, and you'll learn a lot. There are a LOT of nutritionists and doctors out there who feel gluten AND dairy are highly problematic and behind a huge number of things that ail us. They feel NONE...
  4. CMCM
    I know how you feel....many, if not most of us, really yearn to have an officially verified doctor's stamp of approval on the diagnosis, and we get doubtful if we don't get that. But really....all my endless amount of reading has convinced me that much or even most of the time, this celiac disease diagnosis is very elusive because MOST DOCTORS JUST DON'T...
  5. CMCM
    Remember that celiac disease is NOT an allergy. And certainly one could have both....i.e. celiac disease or gluten sensitivity in which the body mounts an autoimmune defense against the poison of the gluten in the digestive system, versus the allergy in which histamines are produced in reaction to the wheat. You can have one with or without the other. ...
  6. CMCM
    Everybody is always looking for a firm CELIAC diagnosis, and therefore miss the important fact that the problem is gluten sensitivity, which can produce the same symptoms in many cases. Some people are now characterizing celiac disease as a subset of the much large gluten sensitivity. It has been suggested that perhaps as many as as 80% of people are to...
  7. CMCM
    I'm also leaning towards the C problem these days now that I'm being totally strict about no gluten. I LOVE flax seeds, so I guess I'll try to be very consistent taking them. I learned about goldn flax seeds once thru Dr. Christiane Northrup....I've tried several brands but the one I originally got from Dr. Northrup's site a couple of years ago is by far...
  8. CMCM
    Enterolab IS known and mentioned by some very reputable celiac researchers and experts. Unfortunately, Dr. Fine has not yet collected all the data needed to present for peer review. Since so many doctors barely know anything at all about celiac disease/gluten sensitivity, it's not surprising they know nothing about new methods of testing. My own doctor...
  9. CMCM
    This is a fairly new book (listed as pub in 2007) that I just discovered, although sorry if it's been mentioned here before. The name is "The Gluten Connection" by Shari Lieberman, I got it from Amazon. It's quite good and has a lot of info in it.
  10. CMCM
    Carrie....wow, I knew about lactose and the villi, but somehow I'd never read about starches and sugars in general also being a problem due to villi damage. I'd looked at everything to explain my digestive woes...and had always figured it must be starches and sugars and dairy that gave me the very obvious problems. This would explain a LOT! I can never...
  11. CMCM
    Particularly if you have suspicious symptoms, gene testing can be informative. However, I just read that about 30% of people who test positive for the gluten sensitivity and/or celiac gene may NOT have celiac disease (not actively, anyway). Not a lot of certainty with this whole thing, unfortunately. However, if you have symptoms, and you know you have...
  12. CMCM
    Criosa...my story is much like yours. My mother nearly died before she was diagnosed at about 43 or 44, and this was 40 years ago! Doctors knew nothing then, but lucky for her she met one who DID know about celiac disease. She weighed about 80 lbs and was unbelievably sick continuously at that point. Her villi were so destroyed that her doctor didn't...
  13. CMCM
    If there's one thing that characterizes celiac disease, it's that of near total ignorance about it. I have yet to meet a doctor who knows anything at all about it. My own GP told me "You know a lot more than I do about celiac disease." And this state of ignorance has persisted for DECADES......it's just not taught in medical school in this country. Doctors...
  14. CMCM
    When I first went gluten free I tried a lot of the gluten free cookies, cakes, breads etc. I had a HORRIBLE time with most of them....they seem to have a ton of ingredients and a lot of sugar...sometimes sugar is the first ingredient! They contain various flours and starches (which I already knew I had trouble with), and while I was eating these things...
  15. CMCM
    Since a gluten reaction occurs FIRST in the intestines, it made total sense to me to do stool testing for the antibodies. I have read several places that the stool testing picks up reactions that the blood tests miss. Certainly that was true for me. I had really been eating minimal gluten because I KNEW it was problematic, and I just couldn't bear the...
  16. CMCM
    I think there is a certain psychological benefit to having an actual, "real" diagnosis. However, if you feel lousy eating gluten and/or other things, and you feel better NOT eating it, then to a certain extent you have to decide if eating it is worth feeling bad. The sticky issue is whether or not eating gluten (in particular) is doing intestinal damage...
  17. CMCM
    I've read many places that lactose intolerance is often a result of celiac disease, but after eliminating gluten for a time the lactose intolerance may diminish. I also had that problem, but in my gluten testing I also got tested for casein sensitivity and found out I had that too, which means I should avoid dairy as much as gluten. If you eat dairy when...
  18. CMCM
    I guess I have to say I get this too. Two days ago I went skiing with my husband. We went to a coffee shop and I had a cappuccino, a big fat piece of pumpkin nut bread, a bowl of soup and a cornbread muffin. 3 hours later I was in dire pain with a hot water bottle on my upper stomach area. Horrible, sharp, unrelenting PAIN which lasted for hours and...
  19. CMCM
    Hmmm, let's see. My mom nearly died from celiac disease, which was diagnosed when she was about 43 and I was about 13. Doctors thought it was all in her head as her weight plummeted to 80-something lbs. Onset of symptoms probably triggered by a hysterectomy. Diagnosis took 7 or 8 years. By the way, she's 85 now and doing great as long as she doesn't...
  20. CMCM
    Courtney, I had to laugh at your comments on the dairy. Honestly, think I can mostly handle avoiding gluten, but the DAIRY....now that's a challenge. It's just in everything I like. It's really almost impossible to avoid. Carole
  21. CMCM
    Hi Donna, Interesting you asked about potatoes and rice. Way before I got diagnosed, I'd identified potatoes as a problem. And I LOVE potatoes, more than just about any veggie. But they kill me, and I have to be very very careful with them and eat them very sparingly. For some odd reason, what affect me the worst are mashed potatoes....probably due...
  22. CMCM

    ARCHIVED "the Trigger"

    CMCM replied to a topic in Coping with Celiac Disease

    I don't know of a specific trigger. I apparently had a lot of colic as an infant and couldn't drink cow's milk for the first year or so. Most of my life I had what I felt was a "sensitive" digestive system, and I always knew I had trouble with dairy. My mom's celiac disease was definitely triggered, though. For her it started with a vengeance after...
  23. CMCM
    I have read items here and there suggesting that some doctors/researchers would like to eliminate the term "celiac disease" and refer to the entire syndrome as "gluten intolerance". The feeling seems to be increasingly that gluten sensitivity or intolerance manifests across a broad spectrum of reactions, and that any degree of gluten sensitivity could potentially...
  24. CMCM
    Lisa, when I got tested thru Enterolab, I did their full panel and found out I am also intolerant to the casein (dairy) protein. IN addition to that, I could ALSO be lactose intolerant. Dr. Fine at Enterolab said casein could cause me the same types of reactions as gluten. On top of all this, when I went off gluten and dairy I STILL had huge problems...
  25. CMCM
    Jerry....I really do understand where you are at with this. I'm kind of curious how you were led to the consideration of celiac disease and Enterolab. I've been where you are....I still am there, in certain ways. This is a very thorny issue to resolve, and we get very little help from the overall medical community in the U.S., most of whom are largely...
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