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
Your body needs time to adjust to the changes, just like anything. But don't fast, eat gluten free. You're not supposed to be fasting, especially if your body is in the process of healing. If you find that on a non-fasting gluten free diet, after 8 weeks or so that nothing gets better, then you might need to look at something else that's causing these problems. It took me 6-8 weeks on a strict gluten free diet before I actually started to feel 100% again and I've been gluten free ever since. If gluten is the case, you've done a lot of damage to your intestines, and that needs time to heal. Best of luck to you, it's not an easy transition.
I struggled with childhood obesity until I was 16. I was about 5'1 and 200lbs, when I turned 15-16 I had a major growth spurt and over that period of time grew to 5'7 and the weight shifted and I was able to lose it. I gained it back when I was 21. I was 5'7 and 200lbs again. I started going to the gym, but around the same time, celiac triggered really badly, and I lost the extra 60lbs really fast, and since then, I've only been able to gain around 8lbs. From September 2010 till September 2011 I had school 6 days a week, and worked 2 part time jobs, I was eating poorly (still gluten free, but lots of fast food and ice cream) and I didn't ever have time to exercise, and I only gained about 8 pounds in the year. I honestly think I had celiacs even as a child. It explains so much that was wrong with me. Apparently wheat is a big trigger to childhood obesity, and my mom was telling me how I never used to feel well, ever. I was such an unhealthy child.
#1 What did your abdominal pain feel like and where was it primarily located, constant or intermittent? And what % has it improved, if at all after being gluten free, and time frame to get there?
At first my pain was intermittent. Only after I ate, and for a few hours. At first I thought it was a stomach ulcer, and was given meds and it didn't go away, and got worse. I then thought it was indigestion, so I'd always be taking antacids and pepto. Then a few months later it was getting worse, and it was constant. I lost so many days of work because I'd be in the bathroom for hours and I'd have to call in sick. The pain was mostly abdomen, rarely in my stomach. The only time my stomach was bothered was when my abdomen was so swollen, it would put pressure on my stomach. It was unbearable by the time I went gluten free. When I went gluten free, EVERYTHING went back to normal. In fact, I'd never felt so healthy in all my 26 years (at the time). It took about 6 weeks to feel 100% better though. It was a long process to heal, but even in the first few weeks of being gluten-free, I wasn't in nearly as much pain as I had been.
#2 Other symptoms related to Gi tract that you had?
Loose, greasy, abnormal BM, I was either C, or I'd be in the bathroom for hours with D as well. And it was like an emergency if I did have to go, to a point where I'd be on my way home, and couldn't even wait so I'd run into a coffee shop or restaurant. Literally, I'd run out of my car and bee line to the bathroom.
#3 Other symptoms in general that you may have had?
I'd always get sores in or around my mouth. I couldn't keep weight on. My brain was very foggy. I was always tired, no energy, and I had severe insomnia. Very low iron. I just had the look that I was ill. My friends and family were very concerned. I'm very pasty white naturally, but this was just down right pasty white because I'm ill. I was always in pain, too. No matter what. I started doing stretches and yoga, and I still felt like I was a 90 year old trapped in the body of a mid 20 year old.
Thank you! I'm so relieved to know that I am not alone. People always judge my situation by saying "You can't hate your sister, she's family!" Well, family doesn't treat each other like our sisters do. I usually make a small desert for my parents and I when I come down, and we have that as a family. She's even got her kids against the gluten free life. Every time I make something for Christmas, she tells them not to eat it or they'll get really sick. You're right, life is too short to put up with people like them, which is why I don't. She ruined my life thus far and I'll be damned if I keep letting her ruin Thanksgiving, Christmas and Easter!
I was at a wedding just over a year ago, and was offered to split a brownie. In his defense, they had no idea, but my friend said "No! No no no! She's gonna get really sick!" And his girlfriend then rolled her eyes and said to him "She has celiac" and glared at me. I have no idea why she was so freaking snarky about it.
People just don't understand how serious it really is, and if they want to be remain ignorant about it, that's their choice. It's not easy not to let them bother you, but at the same time, they're not worth getting upset over.
I miss having a sub, I really do, but to flat out say "I'd kill myself if I can't have bread anymore"? Come on, dude. Seriously. It's BREAD. I've found some pretty decent gluten free bread (finally!!) that has been a good replacement. It takes time, but you really do get used to it. So rude to say such a thing!
When Boston Pizza came out with their gluten free pizza, and I had some, I had a hard time believing it was gluten free cause of the texture. Same reason, cause I've had gluten free pizza before and it didn't taste like that.
There's also a gluten free bakery that sells the best gluten-free muffins, cookies, cakes, breads, everything you can think of, and I had tried a free sample and flat out said... "this isn't gluten free, there's no way, this tastes even better than regular muffins... no way" and they brought out the ingredients and I felt like a dummy lol.
I agree. When I started college last year, I had been invited to go to the sandwich place next door to the school by a group of people and declined, and they asked why, so I was honest and told them, and the one guy says "Man, if I had to give up bread, I'd kill myself." I shot back with "Oh yea, cause not being able to eat bread really is a justified cause for me to stop living." I'm so glad that guy dropped out soon after.
I didn't have a biopsy. I was lucky to be working with a Homeopath with celiac, and she began noticing how sick I was. I had gone to see my family Dr. about it, and she told me to go on an elimination diet, which I had been, but not feeling better. I was cut out the most common allergens I knew about, but the one I didn't was gluten. So the homeopath gets me to list all my symptoms, absolutely everything, and I tell her the stuff I had cut out, and then she suggested gluten, and I had no idea what she was talking about, but I did it anyway. About a month later, I was back to normal. In fact, I never felt so good in my whole life. I went back to eating gluten thinking it was temporary... after 2 months of going back to my personal hell, I realized that gluten free was the only way I was gonna live, and I haven't looked back. All the symptoms I had were matching everything that was listed for celiac disease, and they suddenly go away after being gluten free? I haven't even gotten any mouth soars since I went gluten free, I used to get them 2-3 times a month. I don't care about the diagnosis.
I did the same thing. It was more out of denial. My mind set was that there's no way something that's supposed to be good for me can be the cause of everything. The funny part is I knew it was a possibility in the back of my mind, since my best friend has Crohns, and can't eat stuff that's supposed to be good for you either. I kept eating whole grain breads, cream of wheat, whole wheat pizza, and then I just couldn't handle it anymore and faced the facts that it really was what was making me sick. After my first 2 months gluten free, I really wish I didn't make myself go through that stage of denial.
I know exactly what you're going through. I've been gluten free for 2 years and I haven't had a Thanksgiving dinner with my family since. My sister and I don't get along at all, we don't speak and it goes beyond rivalry to a down right hatred. She uses the celiac to her advantage during the holidays. She opts to make the dinners for Easter and Thanksgiving, and makes nothing I can eat. I volunteer to make something and she gets angry and says it will taste gross and no one will eat it. I've spent my last 2 Thanksgivings and Easters alone because of her and her attitude towards me. It's not easy at all.
I don't think you're being too cautious. A friend of my friend's girlfriend, if he gets in any contact with gluten, he's sent to the hospital and usually ends up on morphine. The last time this happened, he used a cutting board that was rinsed, not washed from the last use, and had CC from that, and ended up in the hospital. Some people are just incredibly sensitive, so it's not a bad idea, especially is someone was eating crackers or something and was touching the fruit.
You are lucky to have gotten a diagnosis. I didn't have the money for it (it's not covered in Ontario), and it was 2 months of waiting to see my doctor to even schedule anything. I couldn't take the pain anymore, and I wasn't sleeping any more than 2 hours a night, I was fasting 3-4 times a week cause I was so scared to eat, and I'd leave my outings because I'd have to run to the bathroom. I was fed up and took matters in my own hands and I don't look back.
It does get better, but it's never without a struggle, because there are people who either don't know what gluten is, what celiac is, or are just plain ignorant and don't care to understand how it affects us. I have no problem explaining stuff to someone who has no idea what gluten is or celiac, cause they're actually sincere in wanting to know what it is and what happens when I eat anything with it... but there's people like my sister who think people like us are the worst people on the planet. She's one of those people who would be outraged by someone getting different food to an allergy accommodation, and people like her don't make this easy.
Then there are people who are just wonderful about it. My landlady's elderly parents needed help setting up their new TV and fireplace, and other work around their house, so I went over this last weekend to help, and they were so kind and made me gluten free lunch both days for helping them. The kindness of some people just blows the rude people out of the water, and then, it doesn't matter what they say or do, cause they're just ignorant and rude about it.
I react differently to barley as I do with wheat/gluten. It's still a reaction, but it's less painful (but not painless), but more abdominal swelling. I had Corn Flakes once, not knowing there was barley (I figured what harm could Corn Flakes do?), then I got a reaction a few hours later, and read the ingredients (duh, should have done it before hand) and that was it. It's not as painful, but still just as uncomfortable enough for me to avoid it.
Sounds to me like it's an issue with your gallbladder. Although I've only known a few people with gallbladder issues, they've had to cut down on things like peppers, garlic, cucumbers/pickles. Try cutting out the pickles, and check the ingredients on the broth. I've known 2 people who have actually gotten their gallbladder taken out because no matter what they were eating, their gallbladder would act up no matter what. I'd start by just cutting out pickles, and anything with garlic, cause almond milk and rice chex shouldn't be a factor, nor a sweet potato.