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CMCM

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by CMCM

  1. CMCM
    Even in 2021, diagnosing celiac disease isn't always clear cut or easy. For example.... 1. A blood test can be negative, yet you still have celiac disease. There are a number of reasons for this outcome, but I won't get into them now. I've read that up to 30% of people tested can fall into this category. 2. A blood test can be positive, yet...
  2. CMCM
    On a celiac panel with three out of four tests being strongly positive, you do appear to have celiac disease. At this point you would benefit from a gene test to determine if you have a celiac gene or merely gluten sensitivity genes. You might have both....one from each parent, of course. A gene test isn't invasive whereas a biopsy is, and the gene test...
  3. CMCM
    Especially if you are very sensitive to gluten, cross contamination is always a problem when you get outside food. Sad, but true. And even if a place understands about not eating gluten, they generally have no idea at all how to prevent cross-contamination and how a minute, almost invisible amount of gluten can make someone sick. At this point, I don't...
  4. CMCM
    I read the article and I can see why he hasn't published anything about his findings. Sadly, the medical community as a whole is so closed to new information and reluctant to tear themselves away from previous beliefs, which are seemingly cast in stone. No wonder so many on the gluten sensitivity spectrum go undiagnosed and continue to be prescribed medications...
  5. CMCM
    Yes, just search for Enterolab and it comes up easily. He's still in Texas, but the website mentions they moved office locations. I met Dr. Fine at a celiac lecture at UC Davis back around 2006 or so. After his lecture he also played some of his songs, so he was definitely a likable and talented guy.
  6. CMCM
    I can't answer this with certainty, but Dr. Fine said they tested for BOTH, which sounds like they can distinguish the two. They did a gluten antibody test and a separate casein antibody test, so that implies the two are different. But I don't really know for sure. They told me that sensitivity to casein can cause the same kind of intestinal damage as...
  7. CMCM
    Best of luck! Remember, you've got to be as informed as you can possibly be and you have to be your own best detective and advocate. After all this time, far too many doctors are almost totally uninformed about all this.
  8. CMCM
    My son has a quite severe peanut allergy, which we discovered when he was 3. Also tree nuts and variety of other things, and who know what else. He underwent a lot of allergy testing when he was young, including the usual skin prick panel as well as a delayed reaction type blood test. One thing we were advised at the time was that with potentially or known...
  9. CMCM
    I had the Enterolab stool test done in 2005, and I've also met Dr. Fine at a lecture he did at a local university around that time and had the opportunity to question him a bit. I later corresponded multiple times with his lab about my results as well and they were immediately responsive and always gave me further explanation as needed. One thing that...
  10. CMCM
    Certainly one effect of both celiac disease and gluten sensitivity in general can be all manner of joint pain...even various forms of arthritis are strongly linked. Therefore, your knee could be the site that is impacted. I had hip pain on one side that went away on a gluten free diet. This was also true for my sister-in-law, who unknown to her at the...
  11. CMCM
    You make very good points! If you have the celiac gene, any number of things can trigger active celiac disease and Covid-19 virus could easily be a trigger. My mother clearly had some sort of gluten sensitivity most of her life until about age 43 when she had a hysterectomy (trigger), and then celiac disease hit her full force immediately and it took several...
  12. CMCM
    I agree with the above comments, but also be aware that unless you have one of the two main genes that would predispose you to celiac disease, what you are experiencing isn't likely to be celiac disease. However, it could be effects of gluten sensitivity (perhaps triggered by the virus) which is referred to as Non-Celiac Gluten Sensitivity. Also be...
  13. CMCM
    You might be lactose intolerant because when celiac disease destroys the villi in your intestine, the tips of the villi are what deal with the lactose. If those tips are gone, you'll have lactose intolerance. After a long enough period of being gluten free, the villi tips will regenerate and the lactose intolerance can disappear. However, you might ALSO...
  14. CMCM
    You likely have additional food sensitivities. With dairy, lactose isn't the only problem. The casein protein in dairy has a protein structure that is similar enough to gluten that your body can "think" it's also gluten and cause the same antibodies to react and cause the physical discomfort as gluten. When I got tested for celiac antibodies via a stool...
  15. CMCM
    It sounds like you could have additional food intolerances or sensitivities. With celiac disease, you can take on more intolerances and even though you are gluten free, you sense that you are not healing completely. It's very frustrating. Using myself as an example, I can't really tolerate dairy, and the gluten free foods out there (breads, crackers...
  16. CMCM
    My son's first evidence of Celiac disease (although we didn't know what was going on for a few years) was Dermatitis Herpetiformis. Several dermatologists he saw for the rash never suggested celiac,and they kept prescribing very expensive creams that did relatively little for it. He eventually self diagnosed celiac disease, never had a celiac test but did...
  17. CMCM
    Felipe....I have more or less given up on doctors with all this, they just aren't knowledgeable about gluten sensitivity and celiac disease. If you find one who DOES know about it, you're very lucky. I decided to educate myself....there's a ton of information out there now that wasn't available 20 years ago, and a lot of newer information just the last...
  18. CMCM
    A longstanding gluten sensitivity/celiac can create other food sensitivities, which may or may not gradually go away if you remove the primary offender...wheat/rye/barley gluten. My recent reading has revealed that the problem is far more widespread than even I ever realized, and it's likely throughout the population in very high numbers. My additional...
  19. CMCM
    Gluten sensitivity is a sneaky and elusive thing. It is linked to what seems like a gazillion different reactions in the body. Given your situation, it seems irrelevant at this point whether you are celiac or whether you have gluten sensitivity.....it's all on a gluten sensitivity spectrum in which celiac disease is one point on the spectrum. Gluten sensitivity...
  20. CMCM
    I've learned that even the old "gold standard" for diagnosis (i.e. endoscopy and biopsy) aren't as "gold" as formerly thought because villi damage can be in patches, and therefore can be easily missed during the procedure. The typical celiac blood panel can also be vague and a negative isn't necessarily a negative. Also, if you have the predisposing gene...
  21. CMCM
    I watched some of Osborne's videos and liked them enough that I'm now reading his book "No Grain, no Pain", and it synthesizes an enormous amount of information in a beautifully organized way that is easy to grasp. I've absorbed bits and pieces of some of the same information from multiple other sources I've read lately, which is why I see that this book...
  22. CMCM
    Here's my 2 cents that comes from over 15 years of ignoring things and finally learning about it. You more than likely have gluten sensitivity at the very least (not necessarily celiac). Given your symptoms have suddenly become something you can't ignore, that led you here for information. Good first step. Your gluten sensitivity MIGHT be celiac...
  23. CMCM
    This is a really good video on Gluten Sensitivity, Gluten Allergy, how Celiac disease fits in, and so on. All the explanations will really clear up confusion that someone new to this might wonder about. https://www.glutenfreesociety.org/questions/is-there-a-test-for-gluten-sensitivity/
  24. CMCM
    "You won't become low in Potassium until you also become low in Magnesium FIRST! When you are having problems with Potassium who are already low in Magnesium..". Yes, I definitely see that now, I kind of figured it out by accident although I didn't know the part about potassium depletion being from a low level of magnesium. Until a few months ago,...
  25. CMCM
    Pretty much ALL of the gluten free baked goods (cookies, cake mixes, all that stuff) give me digestive trouble. Since I am also very sensitive to corn AND probably a great many of the starches used to create gluten-free baked goods (tapioca starch for sure), I figure that's why I don't do well with them. These things are as bad on my system as gluten goods...
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