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Claire

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Everything posted by Claire

  1. Claire
    I don't know if they looked for internal bleeding....who would do that? I had a colonscopy which showed only slight diverticulosis. Nothing to even remove and send off for testing. I know what you mean about the more doctors you see and getting more confused. My GI at least thought my antibody level was abnormal and so this started my search for answers...
  2. Claire
    I know that feeling - especially the missing out on the whole day part. Several months ago I started taking CoQ10 - it's an enzyme. For me the difference has been amazing. I am not running any races to be sure but I am not in bed all day either. I am getting more done and not feeling the overwheilming exhaustion that I had before. It might likewise help...
  3. Claire
    Oh and I forgot to mention what else the hemo doc said today. Dr. - have you heard of the gluten free diet? Me - yes I know a lot about it. Dr. - then you know it's like everything you love to eat, well you can't ever have it again. I would never tell anyone to go on it until we do several concurring biopsies so we can see if there is damage and if it's...
  4. Claire
    Hopefully you are waiting for the celiac test results before you have the biopsy. Yes there is an age related anemia - usually affects fairly old people. If not celiac what could cause it? - any number of things. Some of the causes of anemia are external or internal bleeding, iron deficiency, anemia of chronic disease, kidney disease, pregnancy, poor...
  5. Claire
    Sorry if I sound negative but dieticians cannot always be trusted. Their education does not really prepare them to deal with anything out of the ordinary -basic healthy diet etc. Casein is the protein component in milk. Lactose is an enzyme. The molecular structure of the milk protein casein is almost identical to the structure of the wheat protein gluten...
  6. Claire
    If you are right about what you say here you have gone a long way in supporting what I have been writing here for awhile. That a person who is gluten-free (for whatever reason) needs to weigh the casein factor very carefully. The gluten/casein similarily is a real issue - read up on the mimicry factor - and gluten-free people may need to be CF even if they...
  7. Claire
    Note that Kimball Lab faxes test results to your doctor and mails a copy to you. Claire
  8. Claire
    I opened a new topic tonight on osteo - invited experiences, questions, tips etc. Your idea - come aboard. Topic is titled Osteoporosis Anyone? Claire
  9. Claire
    There was an observation in one of the posts today regarding Osteoporosis. It reminded me that George (Nevadan) had suggested I start a new topic on the subject. I have osteoporosis. I do not have Celiac. I have an as yet unconfirmed diagnosis of Spinocerebellar ataxia. I have been diagnosed with Type II, Delayed Food Reactions and LGS (leaky gut syndrome...
  10. Claire
    Thanks so much for all these replies. I have some reading to do. A little surprised by the differing opinions. I had sent to my friend the list for the full Celiac panel. The doctor declined and ran just the EMA. Now we have to decide what she needs to do. Her husband has every Celiac sympton you can imagine - as does his daughter. He also has Addison...
  11. Claire
    Hi Gina, Well you wait for your thing and I'll wait for mine. All the way to January for the NIH results. I suppose it will go quickly but it looks a long way out there right now. I don't see any way out of Gluten-free Casein-free for me regardless of diagnosis. I actually eat very healthy but I am fighting weight loss because all my healthy food...
  12. Claire
    Your response surprises me. It will no doubt be some time to the marketplace but a lot sooner than 50 years. When research is allowed to move on a fast track as this one has been you can look for something to happen - not in a few months to be sure - but likely within 3 - 5 years. My gestimate. As this discovery has implications for all autoimmune diseases...
  13. Claire
    I have a friend whose husband has all the signs of celiac. I gave her info on the celiac panel for their doctor. He chose to do one test only - the endomysial test. The results were negative. I understand that the tTg test is the most conclusive one if only one test is done. Anyone agree or disagree with that? About the endomysial test: anyone had this...
  14. Claire
    This is about the drug being developed for the treatment of celiac and other autoimmune diseases. Is AT1001 the Answer? (from Celiac Disease: Living Gluten Free) Alessio Fasano, MD, was recently appointed director of the new Mucosal Biology Research Center at the University of Maryland, of which the university’s Center for Celiac Research (...
  15. Claire
    Will post this as a new topic also. Here is a related article: Is AT1001 the Answer? (from Celiac Disease: Living Gluten Free) Open Original Shared Link
  16. Claire
    This piece appeared today in the Baltimore Business Journal. Unfortunately the bottom line will be money. Claire ALBA, UM SCIENTISTS PUBLISH DISEASE FINDINGS Scientists at Alba Therapeutics and the University of Maryland School of Medicine say they have found a direct link between a protein found in tissues and an autoimmune condition called Celiac...
  17. Claire
    Here is the latest PR material I have. Alba, UM SCIENTISTS PUBLISH DISEASE FINDINGS Open Original Shared Link - UGH. The bottom line is always money. I am putting this up also as a new topic so no one misses it. Claire
  18. Claire
    and from other reactive foods as well. Also from medications, from serious infections. It is not exclusive to Celiac as is commonly believed. Claire
  19. Claire
    Hi George, It seems like help is on the way. Hopefully not one of those things that turns out to be worse than what you are taking it for. The research under way here is to develop an inhibitor for Zonulin - It is called AT-1001. Yes it has been tied to intestinal permeability/leaky gut, Malabsorption is a consequence. Damaged villi is too - but...
  20. Claire
    It is frustrating if you know you have a dairy sensitivity but don't know whether it is lactose or casein. I believe the literature supports that with celiac patients it is most often casein. I have a relative who tried taking the lactaid pills and they did not work at all which suggests that she is okay with lactose but not with casein. It's a tough way...
  21. Claire
    Thanks much. Claire
  22. Claire
    This appeared today. Claire Alba Therapeutics and the University of Maryland Report the Role of Zonulin and Intestinal Permeability in Celiac Disease BALTIMORE, Nov. 4 /PRNewswire/ -- Today a team of scientists at Alba Therapeutics Corporation ("Alba") and the University of Maryland School of Medicine reported a direct link between gluten...
  23. Claire
    While being gluten conscious it is all too easy to forget that there all other possibilities. As she goes gluten-free sensitivies to other things may show up that were there before but not so easy to distinguish. Also the milk protein could be an issue. Did I ever tell anyone here that I hate Wal-Mart. I tell my daughter all the time! Claire
  24. Claire
    Replying here to a message above from darlindeb: I know that some people do believe that non-celiac gluten sensitivity can 'turn into' celiac. . I am not one of them. I can't find anything to indicate that in all the tons of stuff I have read on the subject. It seems to me that the gene marker is a definitve. You have it - you can develop celiac. You...
  25. Claire
    For the fatigue try CoQ10. This is an enzyme. I can only speak for myself - it has been a life safer. Claire
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