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
This fall I had all the testing done -- EMA (Immunoglobulin A anti-endomysium antibodies) AGA (IgA anti-gliadin antibodies) DGP (Deamidated gliadin peptide antibody) tTGA (IgA anti-tissue transglutaminase) as well as upper endoscopy. Everything came back negative. Not even a trace of positive in the bloodwork.
Every time I eat gluten (and I mean EVERY time) I break out in hives, welts, and a fiery looking rash. It is ALWAYS symmetrical -- on both sides of my stomach, both feet, behind both knees, both sides of my bum, both sides of my neck, etc. Not all of those places at the same time but always symmetrical. The rash is never blistery or weeping, but very itchy and painful.
Could this still be dh? Or is it just an eczema reaction to gluten? And either way, how can this be when all the blood results are absolutely normal?
I know I need to listen to my body and I do follow a gluten-free diet. I just wonder how one can be so darn sensitive with not a shred of medical evidence to back it up.
Kristy, I could have written your post! For the past two years I have exercised daily, eaten "clean" with tons of whole grains, fruits, veggies, etc. without ANY improvement in how I feel and shedding this 10 pounds of squishy bloat. In fact, the healthier I ate (lots of whole wheat, sprouted grains, spelt, barley, etc.) the sicker and more bloated I became! I am amazed that after only a few days on the gluten-free diet I have lost almost 5 pounds; all of it is water and intracellular fluid. Almost overnight my belly has lost inches, cellulite is disappearing, I no longer have deep indentations in my ankles from my socks, and my wedding ring slides on and off easily.
I simply cannot believe how much better I feel. Like I'm walking around on air instead of dragging a sluggish carcass around! My husband asked me if I would miss things like pizza, bagels and fresh bread, but the thought of eating that makes me almost ill. I would NEVER go back to feeling the way I felt before.
All of my bloodwork came back normal on the complete celiac panel. I'm still waiting on the results of my endoscopy done last Friday, but my doctor said he didn't see any evidence of villi damage during the procedure. I haven't had ANY gluten since last Wednesday; ALL of my diarrhea is gone (usually 7-10 times per day! yuck), ALL of the gas and bloating is gone; ALL of the heartburn is gone!!! I have lost nearly 5 lbs of bloating and intracellular fluid. I already knew I would respond to the diet because I did an elimination diet earlier this summer.
It doesn't really matter to me whether I have a diagnosis of "celiac" or not. I'm just wondering how many of you are like me: negative all the way around but still respond beautifully to the diet. (Of course, I suppose my endo could still come back positive -- I'll post as soon as I get the results)
Thanks to everyone for your thoughtful replies to my post so far. I always learn so much on this board! I can see that many people are already thinking about this issue. I am not diagnosed with celiac (nor do I think I actually have it based on most of my labwork) but I can tell you that I feel absolutely horrible when I eat gluten. Bloating, gas, edema, mental fog, loss of balance, etc. Fortunately for me (I think!) I don't get immediate symptoms when I've been glutened, so if I slip or accidentally ingest a small amount it's no big deal. However, if I eat normal amounts over a period of a day or two, all of the symptoms begin to build up to a point where I start to feel lousy again. I wish these boards had a section for non-celiac gluten intolerants, but then considering this is celiac.com I suppose they don't want to branch out into other areas. Celiac or not, this board is by far the most helpful place on the web.
...I'm just wondering, after reading Dr. Stephen Wangen's book Healthier Without Wheat, how you all arrived at the diagnosis of celiac. Celiac disease is a very specific subset of a larger intolerance known as Gluten Intolerance. Celiac is only diagnosed when you have villous atrophy; however many more millions of people have Non-celiac Gluten Intolerance which can produce symptoms that feel just as debilitating as celiac. In other words, being gluten-intolerant is completely possible without having celiac disease. I'm not trying to split hairs, just wondering how you all arrived so definitively at your diagnosis of celiac. Only 1% of the population has celiac disease while an estimated 20-30% have non-celiac gluten intolerance.
By the way, the reason many of the bloodtests come back with false negatives is because you have to have total villous atrophy (or something darn close to that!) before the antibodies can escape into the bloodstream (which further bolsters Wangen's claim that many people have non-celiac gluten intolerance rather than celiac disease and that's why it is so often missed in labwork). It doesn't mean your symptoms are any less real or devastating; just means that you don't have celiac disease (villous atrophy) per se.
I'm not sure why any of this matters; I'm just wondering if we do ourselves a misservice by "self-diagnosing" celiac rather than accepting the more widespread diagnosis of gluten intolerance. I don't think the diagnosis of non-celiac gluten intolerance is any less "legitimate" than celiac disease, so I'm not sure why so many seem to be searching for that label. Clearly doctors need to be better educated about the serious side-effects gluten can cause, whether celiac or non-celiac gluten intolerant. Just because you may not have celiac doesn't mean the doctor should dismiss you or discount your symptoms. I highly recommend Healthier Without Wheat for anyone who is interested in an in-depth analysis of this.
I don't mean to sound harsh, but my feeling is who really cares if it's an "official" diagnosis? Your blood work has clearly indicated that you cannot tolerate gluten. Clearly it makes you feel sick when you ingest it, so the simple solution is to give it up. While it is important to know whether or not you have celiac disease (and in my opinion you do based on your blood work) you can spend years chasing down an official diagnosis which is very subjective anyway -- one doctor's "yes" is another doctor's "no." Why keep torturing yourself with eating gluten just so another lab tech can possibly misread your slide? The most foolproof way to tell is to go on a strict elimination diet. When the symptoms return after ingesting gluten (and they will), then BINGO! There's your answer! Whether or not it's "official" celiac or just gluten intolerance doesn't matter -- either way you can't tolerate it.
I really don't mean to sound flip. Hope that helps.
It's really not that difficult. Just order a salad with absolutely no added toppings -- croutons, imitation bacon bits, crumbled cheese of unknown origin. candied or caramelized nuts, dried fruit, etc. Ask for vegetables only and oil and vinegar and maybe some fresh lemon for your dressing. Then just tell your guests that you're having a light dinner because you ate a late lunch. Always have some protein available (that you prepare yourself) so you can eat that before you go into the restaurant. I always keep a mini cooler filled with something like grilled chicken, hard boiled egg, string cheese, cold shrimp, unsalted nuts, etc. That way, I can scarf down the protein in the car before I get to the restaurant and then the salad really is enough to fill me up.
I really don't think you can get an accurate blood test result when you haven't been consuming gluten regularly. 2-3 days off of gluten might skew the results, and 2 months off of gluten would certainly skew the results! Even if you are regularly consuming gluten, the antibody tests can have as much as a 30% false negative result, according to my doctor. Also, consuming gluten for only 10 days before an endoscopy/biopsy is simply not long enough. Your intestines had probably healed considerably after just a few gluten-free days; my doctor says you need to be consuming it steadily for 6-8 weeks prior to bloodwork or biopsy.
If you know that gluten makes you feel bad, why not just stop eating it? Do you really need a diagnosis or a label? You can still have routine labs to check for things like vitamin levels and malabsorption issues, so why put yourself through the agony of chasing down a diagnosis? (Just my opinion.) Personally, I am having the antibody tests and a biopsy for DH in about 3 weeks. Regardless of the results, I will be giving up gluten permanently. Having pinpointed the culprit through an elimination diet, I am only doing this one set of tests at my doctor's recommendation and also to satisfy curiosity. Either way, it's gluten-free for me in 3 weeks! Counting down the days...
Well, it certainly looks like mine! I have not been diagnosed yet, but I am having a skin biopsy done next week. Mine looks exactly like poison ivy and ONLY comes out when I eat gluten. In fact, I was misdiagnosed with poison ivy for years! (Honestly, who has poison ivy that lasts six months?!) My dermatologist is fairly certain that it's DH just by looking at it and based on all my other symptoms, but she is going to biopsy just to be sure.
Don't forget to stock up the car with lots of nuts -- cashews, walnuts, peanuts, pistachios, etc. I try to buy unsalted and minimally processed ones at the health food store but you can find them in the regular grocery as well -- check the label carefully to be sure it isn't processed in a factory that also processes wheat. If you have room for a mini-cooler, bring along some cheese cubes and pepperoni, hard-boiled eggs and yogurt. Always have an apple or two on hand. Also stock up on a few kinds of gluten-free granola bars -- Bora Bora and Larabar are my favorites. If you like milk, drink that -- it will keep you much more satisfied than soda. You can pick up individual size regular or chocolate milk at the convenience stores on the road.
Can DH be mistaken for poison ivy? Or does it have a distinctly different presentation? For years, I've gotten a rash on my neck/face (usually on both sides). I've always just assumed it was poison ivy because we do have it growing in our yard. Suspiciously though, it seems like I would get it in other places if it truly was poison ivy, like on my hands and arms and THEN spreading to my face. Any thoughts on this? Any of you ever been told it's poison ivy? Just trying to connect a few dots here...
Every time (and I mean EVERY!) I eat gluten, I break out in my anal/vaginal area (sorry -- TMI!!) with small clear, watery blisters that itch worse than poison ivy. It is the most painful rash I have ever experienced. I nearly go through the roof when I'm showering and the soap or water touches it, that's how painful it is. It only happens when I've been glutened, and usually clears up within a couple of days if I am careful and avoid reexposure to more gluten.
It took me years to figure out this was related to gluten. I kept going to the gynecologist trying to figure out what was going on -- he ruled out hemmorhoids, yeast infection, bacterial infection, UTI, STD, etc. He prescribed a steroid cream which does help but I can only use it sparingly as it is a potent mixture. Once I did the elimination diet and connected the rash to gluten, I rarely even need the steroid cream now.
I know this doesn't sound like the classic case of DH because it is not occurring in the usual areas. But can it occur anywhere? I'm trying to decide if I should have this rash biopsied. And who does the biopsy -- a dermatologist or gastroenterologist? I'm afraid I will have a hard time convincing any doctor to do this since it is not a "classic" presentation.
By the way, I've been gluten-free for more than 2 months now so I don't think any blood work or intestinal biopsy would be accurate at this point...
Well, I don't get a runny nose, but I do get a lot of post-nasal drip down the back of my throat. Also, I usually experience a sharp pain and tightening in my throat (almost like when a cold virus is first lodging in your throat). All this followed by what I can only describe as a "diaper rash" and then I KNOW I've been glutened.