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Traveller

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  1. I have never heard this before. That does not make sense to me because why wouldn't it be Celiac then?--since Celiac is specifically diagnosed by the Marsh scale.

    Please tell us here you heard this? It is usually accepted that villi damage is because of Celiac or a few other things but NCGI isn't one of them.

    <references deleted>

    Here's some quick references from my friend Google:

    http://celiacdisease...-Research_2.htm

    "Many physicians will not diagnose celiac disease unless intestinal damage reaches Marsh III orMarsh IV levels."

    http://www.biomedcen.../1741-7015/9/23

    "GS were considered those patients with negative autoantibody serology (endomysium antibodies-immunoglobulin A (EMA-IgA) and tTG-IgA), normal mucosa (Marsh stage 0) or increased intraepithelial lymphocytes (Marsh stage 1) and improvement of symptoms within days of the implementation of the diet:

    http://www.cleveland...tive-disorders/

    "The hallmark of celiac disease is Marsh 3 or villous atrophy"

    http://www.celiaccen...nd-definitions/

    Non-celiac gluten sensitivity has been clinically recognized as less severe than celiac disease....Some individuals may experience minimal intestinal damage, and this goes away with a gluten-free diet.

    http://www.medscape....rticle/757916_3

    "According to the European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) current criteria, duodenal villous atrophy (Marsh stage III and onwards) is the necessary criteria for diagnosing celiac disease and recommending a gluten-free diet....Despite these observations, caution is still necessary before diagnosing celiac disease in patients with Marsh I lesions. Intraepithelial lymphocytic infiltration can be a common, nonspecific inflammatory response of the epithelium to a number of noxious or inflammatory signals."


  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. You might want to look at the Marsh level, and for indications of dairy intolerance.

    FWIW, the best test I took for NCGI was elimination and reintroduction. The second best tests were how I react whenever I get glutened. And yes, my physician has told me that I do not absorb many items properly. Therefore, I supplement.


  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 not stop. He told me that I must have hidden gluten in my diet. That gluten was stripping myelin off the nerves, and allowing signals to short circuit. He also said that if I found and removed it the hidden gluten, in 6-8 months the myelin should build back up to the point where the symptoms should resolve. I found the hiddel gluten (a package of Hershey's miniatures, of which I was eating 2-3 a day over several weeks), and in 8 months they symptoms disappeared.

    But they reappear with each glutening. At least I know why. Interestingly, the symptoms are worse when I fly.


  4. Has anyone ever been to the University of MD Center for Celiac Research? Heard anything about them? When I return to the States at the end of June I'll be in the Washington DC area and am considering getting an appointment here to have them review my files/case.

    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 glutened, and Dr. Fasano was able to shed helpful light on that symptom.

    For me, it was well worth the trip.


  5. I am planning a trip and am wondering I can pack food in my checked luggage? I have read that I can't bring any food on the plane unless I buy it after I go through security.

    Thanks!

    Diane

    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 supplies.

    The TSA may want to x-ray and swab the food containers. I'd recommend against letting them open anything because of the possibility of contamination. Also, I'd recommend not bringing the liquids through that you can buy past the checkpoint. That might irritate the screeners.

    Having said all that, TSA is notorious for making up rules at the last minute, or reinterpreting rules in new and unique ways. You may get a screener who refuses to let anything through. If so, ask for the supervisor.

    You can also print out the information on the TSA web site that discusses the screening of medical supplies. It may help.


  6. Effective March 15, 2010, Gluten-free meals were discontinued. I am sorry to learn of your disappointment and understand that you could not enjoy the meal service onboard your flight, especially since the flight was delayed.

    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 charge for special meals, so eliminating the low-volume ones may be their response.

    I suppose we all may have to fly a non-US flag airline in order to eat.


  7. I think maybe I understand why Dr. Fine is not publishing. He has a little data on his website showing that he has sacrificed specificity in order to have high sensitivity on his tests, and he pretty much says as much in the accompanying test. I'm not sure the way he has defined the reference ranges would survive a peer review.

    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 test was dead on truthful, but it aided me in deciding to give up gluten. Other factors that aided the decision included family history, children diagnosed by biopsy, the subsequent dietary response, and response when gluten is unexpectedly reintroduced (i.e. "glutened").

    Untimately, the preponderance of evidence is what counted for me. For someone who is a silent celiac, however, the answer may be different.


  8. 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 has gotten better, but it's not what it was. Also, a good glutening will knock short term memory out for a while and send me back to looking at the phone list on the wall, and using other crutches.

    I also take Vit D (10,000 mg/day) and other doctor-monitored supplements, including 5HTP and L-Tyrosine.

    So, can gluten do that much damage? I think it can. I think it did.


  9. 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 are regularly checked because too much Vit D can lead to other problems.


  10. Has anyone tried ordering from the Gluten-Free menu at any of the Outback Steakhouse restaurants?

    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 me croutons in the salad, and because the croutons were covered with lettuce I didn't realize it until I finished a scrumptious, crunchy bite of the salad and found half a crouton in the bowl, and

    2) The New York City Outback served au jus with the prime rib, contrary to the advice on the gluten-free menu. When I questioned the serving the manager said "we serve it this way because nine out of ten of our gluten-free diners don't react to it, and they like the taste". Because I didn't want to be the one out of ten that did react, I sent the food back, and they prepared a proper plate.

    So, Outback's batting average is very, very good. I believe it's one of the best gluten-free dining options around. Of course, your mileage may vary....

    My one tip is to try their pork loin. Although Outback is known for steaks, that pork loin was surprisingly good. It's my favorite menu item.


  11. 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 I went to the general restaurant; it's set up with various stations that make food to order. I told the server I was gluten free, and she got a chef to speak to me. He was awesome, leading me around to all of the food stations, explaining what I could and could not have, and how things were made. He made me feel perfectly comfortable. I chose to eat a steak sandwich without the bun. He spoke to the grill superintendent, who spoke to the griller, went in back to cook my fries in clean oil, and we were off to the races. Unfortunately, I came at a high traffic time and many orders were being prepared at once.

    It was only after I got back to my room and felt the usual menagerie of symptoms developing that I recalled a glimpse of my speak being prepared a grill shared with buns and tostadas, being flipped by a spatula that just flipped a tostada. The results were entirely predictable.

    I should have been more aware and less trusting.

    Moral: It's an amazing place and does an outstanding job, but mistakes do occur. Like everywhere else, stay alert.


  12. 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 with gastrointestinal issues only in some patients. Not surprisingly, there are no firm definitions of gluten intolerance, and no generally accepted tests.

    Against this backdrop we should keep the goal of health firmly in focus. If a test indicates a gluten intolerance, and dietary change brings improved health, the test was beneficial.

    Maybe those who evidently believe that only "proven" tests be used can tell us what someone should do when serologic and biopsy are negative, but symptoms go away when gluten is removed from the diet? Maybe they could also explain the validity of the "normal" range for serologic tests, why different labs have different ranges, and why ranges from the same lab change over time. And the relationship between the range and health in any particular patient.

    Our scientific knowledge has limits. We have to recognize those limits and still do what we can to stay healthy.


  13. 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 about it. See http://www.ncbi.nlm.nih.gov/pubmed/20170845

    So yes, you could have celiac disease with a negative celiac panel. Or you could be one of the handful out of a hundred that has a negative serologic test and a positive gut biopsy. Or you could be gluten intolerant, with a negative blood test.


  14. I noticed when I woke up today my hands were a numb, like they had fallen asleep. They're better now but there's a slight pins and needles feeling.

    Do any of you experience this too?

    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.


  15. So, I have 2 questions:

    1. Do we celiacs really have such a wide range of sensitivity to gluten?

    2. If we do, have any of you had to talk about it with other celiac disease folks who are LESS sensitive than you? Had any problems seeing eye to eye? How do you deal with it?

    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 in the gut. The Lancet recently indicated that a neurological reaction may be entirely divorced from a gut reaction when it addressed neurological reactions and said "...the concept of extraintestinal presentations without enteropathy has only recently become accepted." Other studies show a correlation between stuttering and gluten, point to damage in the part of the brain that normally controls speech and the problem area, and speculate that gluten damages that area of the brain.

    Given that different people's brains are so different, it's entirely possible that different people have different reactions because the neurological manifestations are different. It's also entirely possible that the differing sensitivity celiacs and the gluten intolerant feel over time is a function of the brain healing. But that is speculation. Science doesn't have the answer to why celiacs and the gluten intolerant have different sensitivities.

    Note: the Lancet article referred to above is entitled "Gluten Sensitivity: From Gut to Brain". It's a good read. Apparently TG2 is the marker for an autoimmune reaction to gluten in the gut, TG3 for the skin (DH), and TG6 for the brain. All are autoimmune reactions, but have different markers for different areas of the body.


  16. 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 neurological issues.


  17. Wendy's chili is a risk. I read either on their website or another gluten-free information site that the chili is made up of the meat that does not get used during the day. If a burger is messed up, they take the patty off the bun and throw it in the chili, so there is a definite risk of cc.

    I eat the baked potatoes at Wendy's lots, but I'm too scared to put anything on them except my own margarine. I have gotten very sick from Wendy's fries as well.

    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!


  18. 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 not.


  19. 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 go by a positive anti-gliadin blood test, some accept a positive stool test, and some rely on dietary elimination and reintroduction. Others rely on a combination of factors, which may or may not include the blood test. With that being the case, it's difficult to understand the negative/positive in blood tests results as equalling a gluten sensitivity yes/no. So the negative positive must mean something else.

    I've also learned that many lab tests with a "normal range" are not based on health, but on all tests given by the lab in a period of time, after dropping of the top and bottom 5% (or some similar algorythym). Is the anti-gliadin test result range determined similarly?


  20. I am a 16 year old male who has been struggling lately. A year ago I was an athletic young man. Out for football, wrestling, track, and baseball. I have now dropped out of all of them due to fatigue and other problems. Doctors have tested blood I have seen many endocrinologists and have found out a lot. I have low testosterone, lh and fsh, low t3 and high rt3 and most recently positive antibodies for gluten.

    I was wondering if anyone else had low testosterone due to celiac?

    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.