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
Hi all! Been a while since I've been on here....I was diagnosed almost 2 years ago and have had no issues since then after going gluten free. It was nice! Prior to then I recall having GI viruses that would take MONTHS to "go back to normal" from and that was what ultimately prompted me to seek treatment and discover I had celiac.
Fast forward to last Saturday when I caught another lovely GI bug going around. Saturday was awful....fever and running to the bathroom. Fun fun! It's now Thursday (124+ hours later) and I am STILL having bathroom issues even though the GI bug is now gone. And I'm freaking out! I can remember what this felt like....it literally is like my body can't remember how to go back to normal so for months I just have chronic diarrhea (usually just in the morning until about 10am). But it's debilitating. I can hardly leave the house until then. I am chronically fatigued and dehydrated. And I always feel nauseous. I do NOT want to head back down this road. I figured after healing my colon and going gluten-free this would never happen again.
Does anyone else have this problem? Do you find getting a GI virus worse when you have celiac?
I'm on Flagyl right now, but I don't think it's helping
I've heard about canker sores for sure (apahtous ulcers- sp?). Two clinicians specializing in celiac spoke at a conference in my area and this was one of their slides. Are they on the tongue or cheek area?
It depends on what test you are talking about. tTG has a false negative rate of 1% in national labs (LabCorp, Quest, etc). Is a little higher in children but usually only those under the age of 2.
Here is a good link and quote from the link for more info:
"Because of the major implications of a diagnosis of coeliac disease, professional guidelines recommend that a positive blood test is still followed by an endoscopy/gastroscopy and biopsy. A negative serology test may still be followed by a recommendation for endoscopy and duodenal biopsy if clinical suspicion remains high due to the 1 in 100 "false-negative" result. As such, tissue biopsy is still considered the gold standard in the diagnosis of coeliac disease."
Not ready to do gluten-free with him just yet. Hard to diagnose if you take out gluten. Plus with two negative tests, and negative pathology, there really isn't a reason. Well yet at least. I know gluten can be hard on the system for other diseases so it's something I will consider one day soon. He's already on what I call a "low gluten" diet b/c it's just MUCH easier to cook gluten-free for everyone in the house with myself being a celiac. Also, his symptoms seem to be more lower bowel (TONS of mucus in the stool, explosive/watery diarrhea, etc) and not upper like celiac.
I hope to speak to the immunologist tomorrow about his labs. I ran a total quant. IgA on him about 9 months ago and it was normal. Plus when I read about CVID I see nothing about mucus and diarrhea. It's extremely frustrating not to have an answer!
Hi there! The most tell-tale sign they look for is sprue and scalloping (folds) of the duodenum. Rule of thumb is less than 3 folds, suggestive of celiac. Smooth folds suggests villous atrophy (damage to the folds from something- ie. gluten). My photos looked like smooth pipes! What did her labs say? Those are highly indicitive as well. Can have SOME false negatives for children although still rare.
If it IS celiac, you caught it early!! Way to go mom!
Hello all! Hoping to find someone with similar problems.
About a year ago my entire family got the worst stomach bug ever. Barf! My husband and my youngest child got better within a week. My oldest (7 years old) and myself did not. I work for a lab in sales and was doing celiac work at the time. When I didn't get better (again as this usually had happened with me when we got sick) I tested myself for celiac. Low and behold I had positive labs. My uncle is a GI and I was scoped- yes I have celiac. I've been gluten-free for a year and feel great!
Fast forward one year and my son is still having chronic diarrhea. He also sees a Pediatric GI. Tested twice for celiac (negative) he does have the gene, total IgA normal, negative for Crohns/Ulcerative colitis, had endoscopy/colonoscopy (normal). Only findings were mild gastritis and superficial colitis (nothing of note in otherwords). He's had two stool samples come back positive for WBC's, but has had 1 that came back normal. GI prescribed Flagyl once month for 6 months. The first 2 months it helped the diarrhea. The last 2 rounds did nothing-he's had diarrhea straight through. I took him to the pediatric allergist to do food allergy testing (although his GI doesn't think that has any clinical signifigance). He showed mild positives to milk, corn, broccoli, bannanas, blueberries, and strawberries (level 1-2). He suggested a food elimination trial for these things to see if he truly has an allergy (high false positive rate for these things). He also use to be my pediatrician as a child before he went to allergy/immunology and he suggested several tests to speak to my pediatric GI about, one of those being immunoglobulins.
Long story short, his IgG (level was 550) and IgM (level was 33) came back low. His GI doc just gave us these results today and wanted us to speak to the allergist since this isn't really his specialty. the allergist is not in until Monday. Doing some research on this I see things like "combined variable immunodeficiencies", etc. Not sure what to make of this or if his levels are 1)considered "defecient", 2) if these levels are acquired from having chronic diarrhea, 3) what the protocol is for treatment from here.
Anyone have similar issues?
Thanks and for all of those of you testing for celiac....hang in there! The first 3 months are the hardest but you couldn't pay me to eat gluten now. I feel amazing!
Hello everyone! I need some assistance from my fellow celiacs who love sushi. I've been gluten-free since Nov. 27th 2010 and prior to that was a sushi HOUND! I literally ate it as often as possible. Soooo, I haven't given up sushi, just making gluten-free choices. I know the normal things to change (soy sauce, tempura, checking the rice, etc), but my issues are with the not so norm items. Most of the sushi restaurants in my area are operated by Korean-speaking sushi chefs. Okay- problem solved, right? I printed off a celiac dining card in Korean and thought that would handle it. Well that just seems to confuse them even more. Apparently celiac disease does not translate well into Korean. It just scares the crap out of them and they tend to end up saying things like "we can't serve you". Huh?! I've had multiple conversations trying to educate sushi chefs and servers, but it's hard to determine what in their kitchen is exactly gluten-free and not. For example, their mayo? Have no clue! What about the spicy tuna..is the "spicy paste and spices" they use gluten-free? They don't know! Then their are those restaurants that won't tell me their "special ingredient" they add to their rice (like I'm going to steal their special recipe!). The whole rice vinegar thing is very daunting to explain. Korean celiac card doesn't translate well...I think one place it adding malt vinegar so okay, I get that one. But plain rice vinegar is fine, right?!
Can someone help me so I can TRY to eat gluten-free sushi? At least attempt to pick the things with the safest bet?
I think I may have to try the premade from Whole Foods. They were out over Thanksgiving, so my next stop I will attempt to use those with my chicken pot pie. We make these quite frequently. They are such an easy thing to do with leftovers. Whatever I have leftover from the night before (chicken, veggies, cheese, sourcream, white wine, etc) goes into my chicken pot pie. Never the same recipe, but always tasty. Except now that I'm gluten-free my crust last night was terrible!!! ugh! Hopefully I will find one that isn't so gritty. Can't do it!
So good to hear! It's nice to know there are others out there that didn't gain a ton of weight! You read all these articles about celiac people going gluten-free and then gaining a ton of weight, it just scared me! I like being fit and healthy and don't want to have to combat age, food, and now a special diet on top of that to maintain! Age and Food are enough to work off and stay fit and healthy!
I made it to the gym today- baby steps back. When I get in the full-swing I'll be going 5-6 times a week doing something. It's been about 6 months, but I have to get my butt moving if I actually want to do a triathalon!
@ticktax707 I will probably do a sprint distance @ Eagle Creek in Indy. My DH did it as his first tri and it looks doable. I could probably do it today (although I might fall over doing so) but with training it should be a breeze. 500m swim and flat surfaces are my kind of first tri! My DH is my inspiration. He's doing the Louisville IronMan this year, so lots of training in our house!! What about you? I see you also do them! Fun!
Thanks again for all the advice and words of encouragement!
Ok- just upfront I will say "I know I know, I need to stay gluten-free for my long-term health". I will and I am. However, I never attributed my weight loss to celiac. I felt I lost the majority of it before I had symptoms by working out (which is something I never did before until I had my first child). After my son was born, I weighed 140. Not big by any means, but more than I had weighed in my lifetime and more than I was comfortable with. I was wearing size 10's and 12's and that just wasn't me. Most of my life I was an 8. So I started exercising and went to a size 6. I felt great! Then we moved and I started getting symptoms of celiac. I continued to exercise but with the help of celiac, I was now a size 4, but sometimes even a 2. Size 4-6 looks healthy for me and I have an entire closet full of business clothes in this size. Plus I get very down when I gain weight. This diet will be extremely difficult for me b/c my symptoms didn't alter my life. Meaning if there weren't possible long-term complications from continuing to eat gluten during my life, my symptoms would never be bad enough for me to do so. I occasionally would get GI issues, but very rarely. My biggest complaint would have been fatigue.
So lately I've felt pretty lousy and have stopped going to the gym. I need a quick dose of motivation to get me back into the groove, but so far it hasn't happened. I'll get there, but have also been enjoying my time off! In the meantime, I've been diagnosed with celiac disease and I keep reading how people gain weight. I can't afford to gain weight (new clothes) nor do I want to! That would be a double whack in the face to me- go on a diet which thus far I have been less than thrilled with and then get fat on top of it! Gee...fun!
Please tell me there are those of you out there that haven't gained weight once going gluten-free.
By the way, I'm not the type to eat junk. I won't be substituting donuts, cakes, etc with gluten-free versions. I also hope to do my first triathalon next year, so praying praying that this will keep me in shape, too! Assuming I can make myself get back into working out consistently....ugh!
Tonight was my first attempt at making my chicken pot pie gluten-free. The insides tasted perfect. I found a great gluten-free Cream of Chicken Soup and everything else tasted the same. However, I used a gluten-free Pie Crust boxed recipe (Gluten Free Pantry Perfect Pie Crust Mix). It looked good and cooked well (brown and flaky) but tasted awful! It was extremely gritty. Now, I've just recently been diagnosed and have only been gluten-free for 4 days now, but please tell me this isn't the future of cooking for me! Please tell me there is a pie crust (premade would be perfect!) or recipe that at least tastes like my pre-gluten-free days! I will not serve this to people outside my family and I love to cook! I flat out refuse to not have tasty food for the rest of my life!
Please help! Anyone have a better recipe or premade crust suggestions???
Hi Kimbalou! Nice to "meet" you! I was recently diagnosed myself and am also from the medical community. Heck, I work for the lab that runs the testing! I ran the panel I talk about to physicians on myself a couple of months ago and also had very high levels of all 4 tests. My GI doc still advised a biopsy as a baseline to see the extent of damage (not to confirm, which as you noted can be done via bloodtests alone). This made more sense for why I should move forward with a biopsy. He was able to see several markers with the naked eye for how damaged I was, and I really consider myself fairly asymptomatic so it just goes to show it can be worthwhile to do the biopsy. You only do it once (unless you are refractory but that is very rare). If you do decide to do the biospy, you must continue eating gluten until then or you can get false readings. I was actually quite thankful for this as I had about 6 weeks between my blood tests and my biopsy which allowed me to slowly process I had this disease, read up, hunt in the grocery, go to support group meetings, etc all while still feeling normal and eating as much gluten as I wanted. It gave me the chance to say goodbye to food! I know that might sound silly, but I ate at all my favorite restaurants (and quizzed them on gluten-free options for future reference), read 3 great books (gluten-free for dummies, the gluten-free Diet, and one other I cannot remember the name of right now!), went gluten-free shopping at the health food stores, and drove all my clients I call on (doctors and medical staff) nuts picking their brains about how they treat for this disease. It can certainly be overwhelming at first, but if you do go forward with a biopsy it allows you inevitably to slowly transition to acceptance.
I chose not to post on FB, although I've thought about it. I just told my closest friends and family what was going on. Most have been pretty supportive. I'm not keeping it a secret either and I occasionally "like" things that go to FB like "celiac awareness" or some such thing.
The thing I think you will realize the most from being in the medical community yourself already is just how behind many physicians are with this disease. If you are lucky enough to have someone in your area that specifically treats celiac disease (including your GI doc and FP) then consider yourself very lucky indeed! Thankfully I have a good GI doc, but my FP informed me today that she does not treat celiac disease and I probably need to find someone better suited. Not that she wouldn't, just that she was clueless about it. At least she was honest!
And lastly I, too, am going through the testing for my children. One is negative for the genes and thankfully will never have to be tested again in his lifetime. My other child is positive for the same gene I have, but negative right now for celiac. However we are on about 2 months of chronic diarrhea and on our way to a pediatric gastro next. Not fun to have a 6 year old scoped and I hate this for him. I pray he doesn't have it and that he never will. But if he does get it, I firmly believe it's all in how you look at it. Attitude is everything. I will remain upbeat and positive for myself, and most definitely for him. My husband puts this disease into perspective for me quite well. We have a close friend, in his mid 30's married with two small children who had some pain in his abdomen one day that turned out to be pancreatic cancer in it's final stages that has metastasized. I know he would give anything for his physician to tell him his cancer is treatable by diet alone. He is potentially facing death and his chances of medicine or surgery will likely be futile. So I quit my wallowing when I think of people like him and thank my lucky stars I have a disease I can still eat most of the things I love to eat and live a normal life b/c I caught it and was diagnosed! NO one else with a disease can say that.
So I am at the point where I'm tired of thinking about gluten and onto something else more exciting. We are headed to Disney for a surprise Xmas gift to our kids and I want to do my first triathalon next year! Plus, I use work to keep me busy and I'm also lucky I get to help spread the word about celiac disease into the medical field! I hope I can help at least one physician find a diagnosis for a one patient. One at a time!!!
Hang in there and this forum is great for venting and meeting new people! Trust me, there are so many more of us out there I didn't even realize!!!
Thanks again for the replies! I had my doctor's appt today and he was WONDERFUL! Such a positive and educated physician. Those can be tough to find! My job is working with physicians everyday and let me tell you not all of them are cut from the same cloth! He was very motivating, humorous, and knowledgeable about the disease. I knew quite a bit about it prior to going, so we got to "cut to the chase" on things and talk statistics, my favorite thing! I feel comfort in numbers. Ha!
Anywho, I obviously have celiac, no surprise there. I do my small bowel biopsy in a few weeks to determine how bad, if any, the damage is to get a "baseline" so he says. Good answer to my "why biopsy" questions.
AND, this physician was so good he detected a heart murmur I never even knew I had!
His staff however, was another story.....they were nuts in there and goofing off! Totally unprofessional. But I digress....
I, too, have the occasional third eyeball and green hair sprouting from my ears! Guess I'm not alone
And yes, for those who are curious, my children will be tested, although that was never really an issue to begin with.
BTW-GlutenFreeManna...I don't think you were harsh! I have thick skin and no matter what someone else says I don't always agree, but I will ALWAYS respect your opinion!
Luckily I get testing for free, so no worries there. I'm very lucky to have that benefit.
Thanks again for the support and I look forward to getting to know each of you!
Thanks for your replies. It's very overwhelming at first, especially when you don't have many symptoms to begin with (or any that are worth noting). I think that makes it even harder for someone who has celiac. At least if I had diarrhea that effected my life, and any other symptoms, then going gluten free would make me feel better and then I'd think "this diet is so worth it! I feel better!". Going gluten-free just in the hopes you don't develop any other issues is hard, at least for me.
As for my children, I'm taking one step at a time. First I need to figure out what all this means for me. I go to the doctor tomorrow. No, not my uncle, but a GI in town that specializes in celiac. My uncle is NOT someone I would see for celiac. It's definitely not his specialty. However, I do think he was talking about quality of life reduction in asymptomatic patients. I think they tend to take the diagnosis harder, as has been proven, b/c they don't feel any different by going gluten-free. They just feel punished and restricted (according to him). I can commiserate. This is basically how I feel right now, so I can see how others might feel the same! Now his theory of ignorance is bliss for those who are related to celiacs (by not testing asymptomatic children, etc) is his own theory, not mine. If they are celiacs, they're celiacs and need to be treated as such.
I'll be very interested to speak to my GI tomorrow about all this.
I do, however, know 2 celiacs whose life insurance either a)dropped them, and raised their premiums. Scary, but true. I think that's very sad as well. Such an unfortunate system we live with.
Well again, thanks for the replies, support, and your advice. Let you know more tomorrow after my appt! My GI is supposed to be the "celiac dude" in town. He's the head of the local celiac support group (as their medical liason) so I'm hopeful he'll be a good resource for pointing me in the right direction.
As a side note, does anyone have any info on the amount of damage occasional gluten ingestion has? For example, once slice of pizza a year, or accidently getting gluten in your food? Is reduction better than nothing? I can't seem to find anything regarding this.
Thanks again! This site and each of you are wonderful resources! Please forgive my venting, and I hope no one takes offense. I'm new to all of this and taking it hard I guess!