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Mr. GF in Indiana

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Everything posted by Mr. GF in Indiana

  1. Mr. GF in Indiana
    Apologies if this has already been discussed recently. Those of us who are diagnosed celiac or ncgs by a doctor, are not the point of the following article. The point is to take those who suffer some symptoms medically, who self-diagnose gluten is their problem, and find out what percent of that small group (population-wise) can in fact eat gluten without...
  2. Mr. GF in Indiana
    Some think many wines have gluten; if so, please note each batch of wine may vary in ppm. You can contact the manufacturer, or run your own elisa test. Open Original Shared Link This standard of 20 ppm of gluten as not showing symptoms of damage: is there really a safe limit, now that we know of the extent of neurologic and other "hidden" or "slowly accreting...
  3. Mr. GF in Indiana
    This is a long shot...I discovered even two years after diagnosis, my vitamin levels were STILL all low (D, B's) and I started a course of very heavy vitamin B. In essence, I had "dry beri-beri". Even though I was always taking vitamins...it didn't get into my blood for some reason, and this is apparently not unusual in autoimmune disease. (I am male, bald...
  4. Mr. GF in Indiana
    Hmm...here's the study on corn. Open Original Shared Link. I missed. Since I have over 5000 celiac-oriented articles copied and indexed, clicking the slightly wrong place is rather a hazard of computers. If anyone has further questions or thoughts on what that all means, or the reason that corn gluten and casein resemble and act on many people in the...
  5. Mr. GF in Indiana
    Please feel free to believe whatever works for you and whatever you like. Where I live however, wheat is neither labeled on food cans sitting in my own kitchen, if one knows the hundreds of names under which wheat ingredients hide, or has called the manufacturer (example, wheat is used to act as a paste in wine barrels and to "fine" the wine...think that...
  6. Mr. GF in Indiana
    First congrats on using doctors to pursue your difficulty. However, if he wants to test you later for villous atrophy (celiac gut damage) you need to keep eating gluten for now. The test could turn up negative, you could still be gluten sensitive even so, just not "celiac". Labels in the US are unregulated as to wheat content (or corn, for that matter.....
  7. Mr. GF in Indiana
    I forgot in my first post, one other thing I am doing that has helped. I take fish oil, 1000 mg. twice a day. I believe it is shown, especially when taken with hydrocodone in a trace amount, to tighten the junctions of the gut, thus keeping out the nasty gut proteins somewhat from getting in the bloodstream. I buy a cheap brand at Costco, which has a late...
  8. Mr. GF in Indiana
    If you will review the research at pubmed.com, and the dozens of articles, you will find there is quite the issue with whether celiacs ever recover, how much, and what to do about it. There is something called "refractory" sprue (another older name for the flat villi) that in some people, just don't heal (assuming they aren't accidentally or purposely eating...
  9. Mr. GF in Indiana
    A common discussion between Celiac citizens (and many other disease sufferers), and their doctors, is that the gut or cognition problem is all in their head. Doctors make notes about the apparent mental health of their patient at many visits. I suppose I have had a dozen or more doctors tell me my health issues were somewhat or largely mental (except the...
  10. Mr. GF in Indiana
    I react to all prolamins except rice: sorghum, corn, oatmeal included. My reaction is most of the usual symptoms plus strong neuropathy returns and burns in my legs, it's quite an exacting indicator. You can look at the research of "oats AND celiac" on pubmed.com. I do know corn comes in hundreds...thousands....of wildly different seed genetic mixes...
  11. Mr. GF in Indiana
    Sympathies for your suffering...somehow, it seems like we largely suffer alone, doesn't it? I bought wheat-gluten test kits at $15 each, and after screwing up using the first one, read the directions more carefully. I found no cross contamination of gluten in any product that "shared facilities" with a wheat product line. So before you give up...
  12. Mr. GF in Indiana
    The advice above is excellent. I will add this only: Dr. Fasano in 2003, found that the title "celiac" as a diagnosis, fit only one person in one thousand. He found chemical evidence of celiac but without damage ascertainable, in about one in a hundred Americans (recognizing the many problems in making such guesstimates). Open Original Shared Link Open...
  13. Mr. GF in Indiana
    You can only get a medical answer using the best tools of medicine available, which are now on the internet, such as pubmed.com, rightdiagnosis.com, and a hundred other web sites and forums. RESIST jumping to conclusions. RESIST quackery and utter nonsense. You don't mention your thyroid situation. Check it, re-check it, and research it. Also, adrenals...
  14. Mr. GF in Indiana
    Pre-diagnosis: All of the worst of almost every physical and psychiatric symptom you can think of, worsening month to month for 60 years, but especially from age 50-60, bone pain from celiac-caused tumor of the parathyroid, and muscle wasting/neuropathy. Post celiac diagnosis 2010: residual dementia, neurologic damage, which is both disabling and terribly...
  15. Mr. GF in Indiana
    Thank you for the post, it is very meaningful to me. It shows that someone, somewhere, in the medical community has begun to really pull the basics of medical support and investigation of celiac disease together. These recommendations would have helped me if my doctors had any knowledge of the existence of such a list to use as a guide to what to do next...
  16. Mr. GF in Indiana
    You may be sensitive to corn, corn starch, or sorghum or oatmeal...I am. Prolamins are a problem, and even non-grain quinoa has been tested to show a gluten like protein with reactivity, even though it is not at all in the prolamin family (one type of quinoa only). I eat Udi's bread without any problem. However, I am able to tolerate rice (rice has very little...
  17. Mr. GF in Indiana
    The variation in symptoms, time of life when symptoms appear, blood work results, endoscopy sampling, types of symptoms, vary widely and unpredictably from person to person. You may not be celiac; you may be celiac and even top level testing if you find a doctor who knows what he or she is doing and cares (rare) may turn up all sorts of other problems. You...
  18. Mr. GF in Indiana
    If you think that your symptoms vary with your diet, and not from drugs or over the counter supplements: then try the Fodmap approach, found on the internet. In other words, eat the same thing every day until you get to a diet that does not give you symptoms, then continue it. Do not cheat. Then add back one thing after another until you get the symptoms...
  19. Mr. GF in Indiana
    Based on the information you provide, it is unclear that you are either lactose or gluten sensitive, to a degree of medical certainty. Thus the problems you describe could be many other issues based on all sorts of facts. If you have definite, proven lactose intolerance, then it rarely abates enough (as you age) to let you eat milk products in volume; enough...
  20. Mr. GF in Indiana
    First, as to the corn: there is an Italian study from last year, repeating the effort made in Sweden (all as summarized in PubMed.com) which shows that about half or more of celiacs react in some way to corn gluten type molecules. (In my case, that includes sorghum, of the corn family, and oatmeal, or any other prolamin except rice). Then again, the cross...
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