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Traveller

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

Everything posted by Traveller

  1. Here's some quick references from my friend Google: Open Original Shared Link "Many physicians will not diagnose celiac disease unless intestinal damage reaches Open Original Shared Link orOpen Original Shared Link levels." Open Original Shared Link "GS were considered those patients with negative autoantibody serology (endomysium antibodies-immunoglobulin...
  2. Although the only treatment for NCGI is a gluten-free diet, there is no generally accepted test for it. However, NCGI sometimes causes intestinal inflammation and a Marsh 1 or 2 degradation to the intestinal villi, and that may create issues with absorbing certain nutrients properly. I noticed that you did not advise the full results of the endoscopy/biopsy...
  3. I have PN secondary to gluten sensitivity, or so says one of the leading celiac researchers. My symptoms arise shortly after being glutened, and start with pain in random parts of either foot, progressing to uncontrolled leg movements (leg "jumping"). Unsually the symptoms stop after a few weeks. I went to see the research doctor after the symptoms did...
  4. I went there a year or so ago for an evaluation. It sounds like you want an evaluation as well. For my appointment, I first was interviewed by several doctors who also looked at the medical records. Then they went to speak with Dr. Fasano, and all returned for a brief discussion with me. My evaluation was prompted by one specific symptom that occurs when...
  5. I assume you are in the US. If you bring food through the TSA check-point, declare it to the screener as medical supplies before you place it on the belt. (Yes, the foodstuff consitutes your medical supplies because it is a treatment for your medical condition). You do not have to tell the screener your diagnosis, you only have to declare the food as medical...
  6. Are you sure that those products contain gluten? I've used Armour consistently for two years without problems, and the Armour web site says their product is gluten-free. Open Original Shared Link
  7. Yes, it's possible. My first symbol appears within an hour (severe headache), rapidly followed by fatigue, foggy brain, and a motion disorder. The duration and severity seems to correlate with the amount of gluten ingested.
  8. I wonder if the change was made in preparation for the merger with United, and if the subsequent re-introduction was only until the merger takes place? US airliners are perpetual money-losers, and are resorting to survival tactics including fees for everything under the sun, and elimination of any service that they can't charge a fee for. They can't...
  9. Skylarks's point is a good one. If by "reliable" you mean "truthful", no test will be reliable. Even serologic tests for celiac have what I consider to be a high false negative rate (report negative results when subject has celiac). However, if by "reliable" you mean "helpful in decisionmaking", I consider the test reliable. I don't believe my Enterolab...
  10. I have similar memory problems. They started a couple years before I went gluten-free, and progressed to not remembering the names of people I've worked with for years. I literally would speak to them in the hallway, go into my office, and look at the office telephone list to discover the name of the person I just spoke to. Since going gluten-free my memory...
  11. After my gluten-free steak came covered with deep-fried and breaded onion rings the waitress said "We'll take the onion rings off and put the steak on the grill to burn the gluten off"
  12. Given that vitamin D deficiencies are widespread in our population, I question how well a deficiency correlates with celiac. Vitamin D is made in the skin. I've heard doctors put forth many theories -- such as the cleanliness in our society today "washes away" the Vit D -- but nothing more than theories. Regardless, I'm Vit D deficient as well. My levels...
  13. In the past year and a half I've eaten from the Outback gluten-free menu on New York's east side, Orlando, Tampa, Winter Haven (Fl), two in northern Virginia, Kansas City, and just west of Foster City, CA. I've been there so many times recently I have the menu memorized. In all the meals I've eaten, I've only had two problems: 1) One restaurant served...
  14. If you plan on eating in the WDW restaurants, bear in mind these two things: 1) WDW generally has an excellent reputation, and in many ways is simply awesome for gluten-free dining, and 2) I got glutened there. But only once in a week. Although my story may be an anomaly, here it is: a few months ago I stayed in one of resort hotels. My first night...
  15. I think it is important to keep medical tests in perspective. As much as some may look at medicine as a science, much is guesswork. For example, many studies show a correlation between celiac and other diseases, but no one has yet proved the connection. Another example is the current dispute over celiac being primarily a gut disease or a neurological disease...
  16. My church made it easy. I explained my situation and asked for gluten free wafers, and the next communion sunday there they were! Unfortunately, they were mixed in with the other wafers. So after explaining cc, the next communion they were put in a separate container, set in the middle of the plate. Wonderful!
  17. I read an interesting story in The Lancet on the neurological manifestations of celiac disease. The article said that an autoimmune reaction in the gut has a marker of TTG2; that's the marker in nearly all celiac panels. For an autoimmune reaction in the brain, however, the marker is TTG6. Apparently few labs can check for that marker, and few doctors know...
  18. A few years before I went gluten-free I saw a neurologist because of a tingling that went from my elbow through my pinkie, in the lower side of the arm and hand. The doctor spent a lot of time running an electrical charge through different nerves and pronounced everything OK. I still have the same tingling feeling.
  19. I don't think medical science understands the body's reaction to gluten sufficiently to answer your questions. What science apparently does know is that the reaction to gluten isn't entirely in the gut. The result of the test spoken of above where a drug was used to regulate zonulin is entirely consistent with the view that the reaction isn't entirely...
  20. Last month The Lancet had an interesting article entitled From Gut to Brain". That article said it is now commonly accepted not only that Celiac has neuological manifestations, but also that the only effect of Celiac may be neurological -- no villi damage required. They also discussed a test neurologists could use to gain insight into whether gluten is causing...
  21. I've eaten safely at Wendy's many times. I've eaten baked potatoes with cheese and broccoli safely. And I always get a double without the bun. Yum. The only time I got sick was when I ate chili, which puzzled me. Now I may know why. Thanks!
  22. Yes, I had a "negative" anti-gliadin IGA and a positive stool test. The positive stool test provided the impetus to go gluten-free. The resulting positive dietary response, and the reappearance of symptoms when gluten is reintroduced, make me believe the stool test was accurate, and the blood test was not. Enterolab worked for me when the other tests did...
  23. I looked at my blood test results again and became puzzled. The test result page says results less than twenty are negative, twenty to thirty a weak positive, and above thirty positive. What supports this breakdown? I understand that there is no generally accepted test for gluten sensitivity. Some doctors think gluten sensitivity does not exist, others...
  24. I did some quick searches on-line and found some studies that found correlation between celiac and hypogonadism. Apparently it's just another one of those things that likes to hang out with Celiac -- like hypothyroidism, adrenal fatigue, and other ailments.
  25. Thanks to everyone for the helpful information. From my reading, it appears the only issue of concern is whether I have two DQ2, or one....
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