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 Colleen! I've been on the forum for about 20 months and I can't tell you how many times I've picked up life-altering suggestions on all manner of Celiac conundrum. I'm so grateful this community exists.
And, I really thank you for your thoughts below. These are all great suggestions that I'm going to spend some time on.
As for the probiotics, I've gone through a bunch and ended up using Accuflora which really did change my life. It regulated my digestive system in a way none of the others did. I'm so grateful it exists.
Hi. Thanks for all the thoughts. I had antibody tests and endoscopy to confirm diagnosis. My antibody's went from >225 to 10 and have remained. I'm awfully sure I'm not getting glutened as I'm a neat freak and a nut about keeping things separate, but of course it's a possibility.
Veggies don't do well with my stomach, causing flatulence and bathroom time! I am trying to get a few carrots and peas into the mix, but they always give me trouble. Fruits, too, except for ripe bananas.
Trial and error, I guess. I do keep a daily food diary and login everything in and everything out. Patterns sometimes seem to develop but then fall apart. Plain boiled chicken is great for a week, and then 3-5 hours after eating it I'm laid out.
I've just found ANOTHER new GI/Celiac doc in a neighboring state who I'll start seeing soon, and I hope to get some new perspectives. (Had to give up on New Mexico doctors as NM has 2nd worst access to medical care generally, and even my own primary care and GI doctors often take 12-15 weeks for an appt.)
I'm 21 months past my diagnosis. The first few months saw great improvement, but now almost 2 years later I still have terrible fits of crippling nausea. All I can do is lay down and wait for it to pass. I have diarrhea 2-5 times a month, all through the night, clammy, sometimes cold sweats.
I've had to miss some work because of this. And during the bad times, my depression is really really deep. I confess that during the worst of it I just think that life is not worth living.
Now, on a good day, and there are some, maybe 2-4 good days a week, I feel great, am active, and do all the things I love. But because I know what can or will happen, those good days become clouded with fear. I can't possibly eat that, can I? And my diet, because of the fear has been reduced to the few "safe" foods, I've found: eggs, ham, rice, chicken, jello. (Don't ask. Yes, I've tried everything else.)
What do you do when you're dealing with an ongoing depression during the bad times, and a crippling fear the rest of the time?
It's so funny how different we all are. After almost 9 months off from all dairy and gluten, the only thing that enters my dreams, the only thing I get physical cravings for - bread.
I can't imagine that I'll never enjoy bread again. It fills me with a really profound sadness. Pizza. Okay I can live. Bagels. I miss them but its okay. Donuts, all right.
But, a piece of white Mrs. Baird's bread? I miss the texture and the flavor and the flexibility of that so much. Every gluten-free sobstitute (sob...) I've tried has been just a crushing disappointment. The aftertaste. Oh god. I get a little nauseous even thinking about it. If incompletely burn a gluten-free piece if bread and slather it with some honey, I can pretend life is going on normally. Otherwise, I'm just tolerating things.
I hate that it is so for me, but this is what I've found to be the most depressing about my new diet.
Hi Bart. I've only been gluten free for 8 months. I have to heartily disagree on the bread thing. I've been through every gluten-free bread imaginable, even dropping a lot of money at one of the most talked about gluten free bakeries in the country (Revolution in Santa Fe), and nothing - for me at least - comes close to regular bread. I appreciate your perspective, and I'm glad you found something you can enjoy, but I have not. And that's valid.
Hi! Yes, I wasn't diagnosed until I was in my 50s, so the amount of damage was fairly extensive. I still have bad nausea days, sometimes from cross-contamination, sometimes - as my doctors say - because my stomach is just doing the best it can.
We had an RV years ago, though, and are thinking of getting one again.
I think I'd try it because I find it difficult to eat gluten free everywhere, travel, out for an evening, etc. I simply miss bread. I hate to be such a weenie, but for me, there's nothing like real bread. If the testing goes well, I'll be in line to try the drug.
After eating gluten and dairy free for 9 months, I made my first long car trip. I used to love road trips: pizza, Chinese food, and fast food all day!
But this year I packed my rice cooker, toaster, and a cooler with ham, frozen chicken, ketchup, bacon, eggs, soy sauce, and then a bag of the life-saving Mi-Del cookies and Glutino crackers and nutrition bars to fill in the cracks!
It was a pain, of course, finding kitchenette motels where I could cook suppers and breakfasts, but I was healthy all week. I stopped at Wendy's every lunch for plain patties and a baked potato, or a plain chicken patty for a change. (Not every fast food place understands the order: "2 patties, no bun, no cheese," but most did.
I got tired of washing dishes in motels every night and morning, but it was better than being sick.
I did 7 days and used up my traveling food and restocked it every couple of days. The food gets boring, but it's boring at home as well. (Rice and ham. Rice and chicken. Rice and hamburger.)
Since I last posted, I did have another endoscopy to check my villi, and they are still atrophied, but overall I was cancer free in my stomach, colon, and duodenum, so that was all good news.
Good luck! I travel with a rice cooker and in a pinch, mix in plain Wendy's burger patties or Burger King tenderloin chicken patties. If you REALLY talk to the counter people and explain you just need one of their patties cooked by itself, it's not impossible. And I travel with Glutino snack bars. They are not delicious, but they do give me some energy for a couple of hours.
The rice cooker, though, has saved me countless times. $19 and I use it every day.
For those newish celiacs with secondary lactose intolerance, like me, I wanted to give a shout-out of encouragement.
When I was first diagnosed in October 2012, one of the hardest pills to swallow was my secondary lactose intolerance. I couldn't imagine living without dairy. I read on this forum and many others that secondary lactose intolerance often went away in 6 months to 2 years. I banked on it. I prayed for it.
Every once in a while I'd try to a small milk chocolate candy or a small piece of cheese, but I always felt nauseous a short time later.
Until 5 and 1/2 months passed. Then I had a small amount of cheddar cheese on my eggs. No problem. I tried shredded cheddar on my potato fine. I've not yet experimented with REAL milk yet, or ice cream, but being able to add cheese to my daily bowl of rice has made me happy.
I feared, after the first couple of months, that I had lost dairy forever. Now I'm hopeful one day to glug a big glass of REAL milk again, and dive into some ice cream.
Hang in there, I guess, is the message. I've received so much support from these forums, I wanted to share this encouragement with others.
I'm a 50+ year old man. For more than 4 months I suffered severe nausea and diarrhea. After countless tests of various types, I scored >225 on both antibody tests. Before we did an endoscopy, I switched to a gluten free, dairy free diet.
The first 10 days were terrific. I felt a lot better immediately. But then for 2 months I had good and bad times. The nausea still sometimes chased me to my bed where I would spend 3-4 hours 5 days of the week. And certain fatty foods still made me sick, even gluten free.
Over the past month I've had more improvement. I have now had 12 days nausea free, and the diarrhea has stopped.
I'm getting used to the limited dietary choices - thank God for bacon and eggs! - and I feel better by miles from before I was diagnosed and in fact for years before.
My gastro tells me I've probably suffered stomach upset for years because I was undiagnosed. (More toast and crackers, I used to say when I was first sick, and of course that made me worse.)
It's a pain. Eating out is hard. Traveling can be nearly impossible. But Glutino nutrition bars and Mi-Del cookies have saved me on the road many times! Rice, ahhh, the most important meal of every day.
I don't wish this on anyone; it can be severely limiting. But feeling good is the best revenge on the damn gods of celiac.
Everyone, hang in there, especially those of you new to the diagnosis.
I appreciate your input! I am keeping a good food diary and indeed too much fiber makes me worse, too much fruit, for example. Pork and beans is hard on my stomach. My go-to food is rice. It can be fixed a number of ways and it never seems to bug me. I love this forum. I've learned so much.