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
I am writing with a cautionary tale. When those of us with food sensitivities have a GI problem, our celiac/gluten sensitivity, lactose intolerance, etc are almost always the first thing we go to. For over a two year period I had become convinced that my gluten sensitivity was becoming worse and worse. By November of 2012 I was having episodes of severe pain in my upper abdomen that also were accompanied by fever and chills. (It had been about 20 years since I'd last had a temperature over 100°). I was starting to make absurd conclusions about where the gluten was coming from (given how strict I've been with my gluten-free diet for over 3 years--I am very very strict). Absent any reasonable gluten sources, I began suspecting I'd developed sensitivity to corn or soy. But the events seemed unrelated to my consumption of those substances.
After an emergency room visit at the end of December and, and a miserable January, I finally got in to see an insightful GI doc, we began looking for other explanations. He scheduled some tests right away including an ultrasound (came back negative for disease or injury), and a CT scan with contrast dye and barium "smoothie". Much to my shock the radiologists found a tennis-ball sized mass in my mesentery. I am just recovering from the biopsy today to determine if it is malignant, but either way it will have to come out.
So my recommendation is that, along with the usual questions about whether it might be another food sensitivity, it is very well to consider that if your symptoms become increasingly or inexplicably worse, it may be worth asking your doctor to do a thorough exam for other possibilities. Especially if they are accompanied by chills or fever.
I thought I'd provide a follow-up on my status. I just finished an initial run of tests at the GI doctor and one value that was illuminating was an elevated lipidase level. I do not drink alcohol (I'm practically a teetotaler, with fewer than 3 alcoholic drinks a year) and I am not overweight by any measure, but indications are that when I was in the ER my lipidase levels were probably much higher--at the level common pancreatitis. We won't know because no tests were run at that time. The ultrasound came back with no evidence of disease or injury, and I expect that the CT scan I have on Monday will also produce a similarly uninformative results. We don't know, and we may never know what was causing my lipidase levels to be high, but if there's one thing I learned from the experience, it is that having a dietary issue like celiac/gluten sensitivity can lead one to attribute most GI difficulties to exposure when another disease process may be at play. While I very much doubt I have anything so serious as pancreatic cancer, my thinking is that any sudden increase in severity of symptoms with no clear source of exposure should best be raised with a GI doctor to eliminate other potential issues. Those of us with GI issues may know our bodies very well, but even we can be surprised!
I just discovered them. They are kind of expensive, and it takes about 20 minutes to get a result, but I think they'd be great for travel and reduce the anxiety of having your trip ruined by a stray crumb! You can find them at http://www.ezgluten.com/ I have run two tests to try them out and see if they work OK. They are pretty sensitive (10 ppm is their stated sensitivity). The company that makes them appears to do a lot with industry testing: http://www.elisa-tek.com/
Thanks for all your helpful posts! I am slowly getting back to normal. I have been lactose intolerant for about 22 years, and possibly casein-sensitive. When I was in the ER the drug they gave me for stomach spasms was Valium. It turns out most formulations of Valium contain lactose as the top "inactive" ingredient. That explained why the spasms went away but a little later I started having new problems with my gut. I am also sensitive to oats--even the certified gluten-free kind. So I avoid those products. So far I have not noticed any bad effects from soy, corn, or other common co-morbid sensitivities.
I got a set of EZ-Gluten testing kits and tested a couple of the items I'd eaten prior to the latest episode. The corn tortillas that other gluten-sensitive friends had recommended had at least trace amounts of gluten. They are manufactured by a company that also makes wheat-flour tortillas, but I'd been able to tolerate them for the past 3 years without much trouble that I'd been able to notice. I'd had quite a few of them because we didn't have a lot of left-overs in the house after the holidays (the whole routine was off kilter), so that may have put me over the edge. Usually I only have one or two at a time and with lots of other food (such that the gluten exposure in a meal would be well below 10ppm).
Anyway, I had a spoonful of black-eyed peas and several pieces of cornbread (with sorghum and rice flour) for dinner and am feeling fine, so that's a good sign. I usually eat a pretty colorful and high-fiber diet, so the past week of white rice and bananas was beginning to wear on me.
When I learned I couldn't eat gluten anymore, I had a pretty hard time too. Eating out, pot-lucks, social gatherings, family gatherings are still a challenge, but nowhere near as bad as I originally expected. The worst thing is to dwell on what you're going to miss. I used to bake bread regularly, I grieved at the loss of this simple pleasure, but after a few years and some accidental glutenings, the thought of bread of any kind is unappealing. I don't miss it one bit.
As for beer, I used to love a thick stout and dabbled in homebrew a bit. Beer was one of the first foods that I had trouble with when my gluten sensitivity started becoming noticeable. So I had stopped drinking it long before I realized I had a problem with Gluten. Since then I've had some of the sorghum and rice beers and they are both quite light and flavorful. I don't remember what Corona tastes like, but sorghum can be made into a light pilsner (but with a distinct aftertaste). It reminded me so much of beer my body got ready for trouble that never hit.
If you are foodie (I am not, but I like tasty food), go to the recipe sites like Gluten Free Goddess for inspiration and hope. There are so many delicious foods out there. I like to remind my family that most of the food in the world is gluten free. My mom has become quite the skilled gluten-free pie and home-made gluten-free ravioli maker! I don't know how she does it, but you can't tell the difference. In fact, I think gluten-free pie crusts can easily be better than wheat ones!
I live in a non-sectarian intentional community of five adults I formed back in 1997 (kind of like the support, companionship, cost-savings, and comfort of family, but with less baggage and obligation). We share all grocery costs and each of us cooks for the household once a week (it's a free-for-all the other days, but there are usually plenty of leftovers). There are no personal shelves or partitions in the fridge. Unless you label a doggy bag or personal treat as off-limits, it's up for grabs. ($130/month pretty much pays for all the food you can eat--a pretty good bargain).
I've been lactose intolerant since 1990 and discovered my gluten sensitivity in 2010. We also have a vegan housemate, so we've always cooked to the lowest common denominator: gluten-free and animal-product-free. This living situation isn't for everyone, but those whom we invite to join the community are fully aware and accepting of the dietary considerations. Some new housemates need more "training" than others. I have one housemate who would seem to be almost gluten and dairy dependent, but over the past year-and-a-half he's come to learn that you can make delicious food without wheat and milk. With a family history of type II diabetes, he's also discovered the unexpected value that comes from the deliberateness required to eat a gluten-free, vegan diet: less processed food and more whole foods. Today, I taught him how to make a roux with chickpea flour (but forgot to show him how you can use soy milk and margarine to make it dairy-free--he tried to make it with just soy milk instead of his preference of whole cream).
As I mentioned, intentional community is not for everyone, starting one is not easy, and finding one that you can adapt to living in can be difficult. But my main point is that what I've found over the past 15 years (and 20+ housemates) is that people are more flexible and open than you think. Be confident in what you need, let people know that your dietary needs are not a choice, but a necessity with serious consequences if you deviate. If living with and established friend seems too risky, seek out a safe resource for finding housemates (if you have a faith community or other social group to which you belong, that can be a good start). We usually don't tell people about the vegan/gluten-free thing until they come to the interview (usually over dinner). We do say we're vegetarian in our Craig's list posting and on the website, but people are more open to the gluten-free/vegan thing once they've had a delicious vegan/gluten-free dinner with interesting dinner hosts (at least we think we're interesting). If we meet someone who can't fathom eating anything but Mac-and-cheese steak-stuffed chicken with egg topping, we know it isn't a good match.
Be confident, let people know that your dietary needs are not a choice, but that they are not a restriction on enjoying a delicious, healthful and varied diet! Most people would probably benefit from eating a rich gluten-free diet only because it generally forces one to cook more from scratch using whole foods. Can't go wrong with that!
I'm writing after a week-long ordeal after a very small gluten exposure. I'm feeling paralyzed about eating anything that isn't 100% guaranteed gluten-free and trying to figure out how to eat during the immediate healing period after exposure.
Since I went gluten free in early 2010, I've had a few accidental gluten exposures. Gradually, my reactions to "glutenings" have gotten worse and my sensitivity greater. I understand this is common, but it seems to have happened quite fast. Now my reaction is severe cramping and pain in the upper gut, nausea (but no vomiting), alternating chills and sweats like I get with bronchitis, sinus headache, and with this last exposure, fever as high as 102°. (I should note that it had been over 15 years since I'd had a temperature over 99°)
Last Friday I ate some likely cross-contaminated food and by Saturday morning I was cramping up and getting chills. Instead of resting I decided to take some ibuprofen and see a client, help a friend fix a dishwasher, and go out to a couple movies. Like a tough guy I was just playing through the pain. I also didn't follow my strict post-exposure diet: water only on the first day, followed by rice and bananas on the second. Gradually back to normal diet and activity by the 4th day. I think I was rebelling a bit because I'd been waylaid twice in December already by apparently minuscule exposures. Long-story short, after a trip to the ER for excruciating gut pain, nausea and fever, and a visit to the GP to check for infection (no evidence found), I am at about 80% of normal!
Does this sound at all familiar to anyone? Is this even a typical gluten reaction or should I be looking into something else here? I'm feeling a little paralyzed about eating anything that isn't absolutely 100% guaranteed gluten-free. What do you eat after a gluten exposure? Even if I take care of myself, I can expect at least 3 days of being out of service. Are there tricks for getting back on your feet faster?
P.S. I have an appointment with a GI doc at the end of the month to look into other possible problems, but that appointment seems like a long way off. I am trying to schedule an appointment with a dietician, but feel ill-equipped to ask the right questions. As for my diagnosis: my IgA tests came back decidedly negative, and I never got endoscopy because I'd been gluten-free for too long by the time I got in to see a GI doc. Before, my typical symptoms were bloating, lots of foul gas, and mild cramping in the upper gut, and, a few days later, severe burning and itching on the tail end of things. Following this I might get a rash in my armpits, elbows or along my waist, but I don't know if this is related: the rash doesn't seem match descriptions of dermatitis herpetiformis.
It is almost certainly a coincidence, but the question is certainly a valid one. Type O blood is the most common blood type, therefore a sample of the population will return a larger number of celiac patients with type O blood, a slightly smaller number with type A and much smaller numbers of the other types. Most people with celiac also have dark hair. It is a natural and wholly expected human tendency to seek out patterns. Once we think we see a pattern we need to verify it. The scientific method is an entirely accessible system designed to control for bias and to filter valid patterns from invalid ones.
This issue of blood types and digestive traits was promoted by a naturopath by the name of Peter J. D'Adamo. (D'Adamo, Peter J, and Catherine Whitney 4 Blood Types, 4 Diets: Eat Right 4/For Your Type, New York: Putnam and Sons. 1996. 392pp). This book is, in my mind, a great example of unverified pattern seeking. Nowhere in the entire text does he cite any valid, repeatable research supporting his claims, many of which are quite significant. One claim that caused me great concern was when he stated quite authoritatively that people with type O blood are prone to hyperthyroidism (ibid. p 53). There is absolutely no evidence to support this claim. It is true, however that a larger number of people with type O blood will have hyperthyroidism because there are more people with type O blood. The entire book is basically an untested hypothesis published as definitive science. While some may claim it is possible he is right, it is also possible he is quite wrong. Without evidence there is nothing there but an idea that needs validation.
A good scientist uses his/her intuition to ask good questions, but relies on the rigors of the scientific method to establish if his questions lead to valid answers or not. D'Adamo cuts past the testing and jumps to certitude without any facts to back up his claims. Anecdotes (which he seems to rely on the most for his "proof") are not valid because they represent cases he has selected to prove his point, not randomly sampled subjects compared to a cohort of control subjects.
We must not leave science only to the scientists. Each one of us must take the responsibility to be a critical thinker and consumer and promoter of verifiable and accurate information. This is especially important for those of us who need good, reliable information to protect ourselves from the dangers of exposure to gluten and other toxins (to us). While D'Adamo's book has a disclaimer stating that the authors claim no liability for their recommendations, and insist the book be used as a source of "information to help the reader cooperate with physicians and health care providers..." (Ibid p. IX). However. like the "nutritional supplements" sold in health food stores and pharmacies, the fine print about lack of scientific evidence is decidedly overshadowed by the large print that makes clear and definitive medical claims.
Sorry for the wordy and probably overly pedantic response. Please do not take this as a criticism of you. It is always good to ask questions.
Well said. Whether or not D'Adamo has an PhD or even an MD (which he doesn't) the main problem is that the book is based on an untested hypothesis. It is pure speculation supported by anecdote presented as fact. There is no research supporting his claims of a correlative (much less causal) relationship between blood type and celiac or gluten sensitivity. Given the prevalence of type O it is reasonable to assume that a large percentage of the total number of people with either condition will have type O blood. But without proper critical analysis, people with celiac and type O blood will be inclined to say "wow, I have type O blood and celiac. It must be true!" People with AB- might say "I must be a fluke because I don't have type O blood". The scientific method is a collection of procedures designed to account for our natural tendency to see patterns where none exist and for our tendency to seek confirmation of our biases instead of solid proof. Anecdotes are not proof. They are stories deliberately selected to prove a claim. Without repeatable statistically verifiable evidence, such stories are just "affirming the consequent", "post hoc" and false premise logical fallacies.
Until such time as solid, repeatable evidence demonstrating that blood type is a reliable predictor of food sensitivity, it is unproductive to follow D'Adamo's advice. It could be he is right, but it could also be that he is decidedly wrong. Combined with evidence-based evaluations, it is better advice to determine your own physiological responses to various foods and adjust your diet accordingly.
It is interesting that D'Adamo quotes his father (also a Naturopath) on page XV of the introduction (D'Adamo, Peter J, 4 Blood Types, 4 Diets: Eat Right 4/For Your Type, New York: Putnam and Sons. 1996. 392pp), stating that each person needs to be treated as an utterly unique individual (a fallacy right off the bat). The rest of the book essentially makes broad recommendations based on an unsubstantiated relationship (namely blood type to dietary function). It is a terrible shame that the Putnam & Sons were/are willing to publish such manipulative nonsense. Further, it is ethically questionable to perpetuate unsubstantiated claims.