This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Here's some quick references from my friend Google:
"Many physicians will not diagnose celiac disease unless intestinal damage reaches Marsh III orMarsh IV levels."
"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:
"The hallmark of celiac disease is Marsh 3 or villous atrophy"
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.
"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."
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.