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
That's very interesting about cigarettes/nicotine. I was diagnosed with Crohns disease and type 2 Diabetes before I quit smoking. I had very few flareups with the Crohns and got my blood sugar down with diet and a minimum of medication and was able to go off the medication after a year. I quit smoking 8 years ago this month. Almost right away, the Crohns symptoms got worse. I was on one medication after another to try to ease the symptoms. Then I had to have surgery because my gall bladder ruptured, and I also ended up having to go on insulin to control my blood sugar. For awhile after the surgery, I had only minor digestive problems, but then they started up again, worse than ever. I struggled through it for over 3 years, before being diagnosed in February with gluten intolerance. I went gluten free immediately. My Crohns has improved and so have the other digestive issues. They're still there and flareup, just not as often or as bad. The only thing that still continues to be a problem is my blood sugar, which is very hard to control, even though I watch my carbs, exercise and take my insulin.
I was diagnosed and went gluten free the first part of February. The first 3 weeks were wonderful. I felt so good. Then, I started having major withdrawal symptoms. For over a month, I felt worse than I had before going gluten free. If I hadn't had the good 3 weeks, I would have given up. But I wanted to feel that way again, so I struggled through it. I've gradually gotten better and feel good more often and for longer periods of time. I also have Crohns, and sometimes I'm not sure what's acting up or what set it off. Overall, though, I can see improvement. I've had consistant improvement in some areas since going gluten free, even when I've felt horrible elsewhere. I used to get really bad seborrhea breakouts on my scalp. They would itch, and I would scratch without thinking about it, until they turned to sores. I used to get canker sores inside my mouth, that would take forever to go away. I have had no breakouts on my scalp and only 1 canker sore in my mouth during the past 4 months. Reminding myself of the improvements, no matter how small they are, keeps me going when I want to give up.
I was diagnosed the 1st part of February. Went gluten free immediately and felt fantastic for about 3 weeks. Then I suddenly started feeling bad -- almost worse than before I quit gluten. I've gradually gotten better, but haven't gotten totally back to that fantastic feeling. Last month, I had to have dental surgery for an old root canal that had abscessed. So, it's taking longer to get back to feeling better.
Sounds like what I went through 3 years ago. I had frequent burning pain in the middle of my breastbone, a constant ache behind my right shoulder and pain in my right side. I woke up in the wee hours of the morning with stomach and abdominal pains that kept getting worse. The pain was so bad, I couldn't stand up straight. I vomitted several times, even though I couldn't eat or drink anything. I went to the emergency room, and based on what I'd eaten the night before, was told I had food poisoning. Two days later, I wasn't any better. I was able to keep down Gatorade, but nothing else. I had abdominal bloating and pain but couldn't pass gas and hadn't had a BM since the night before I woke up sick. I went back to the emergency room, only to be told I was constipated.
Eventually, I got better. I knew it hadn't been constipation, so I spent tons of money I didn't have trying to find out what was wrong with me (no insurance). One doctor convinced me I had too much stomach acid, and possibly a hiatal hernia, and told me to take Prilosec. He couldn't have been more wrong, but I trusted him, even though the Prilosec wasn't working all that well. Five months after I had the first attack, I had another one just as bad. Of course, it was in the early morning hours. That time, I spent 5 days trying to ride it out, because I was pretty sure the doctors would give me the same song and dance as before. I didn't get better, and a friend convinced me to let her drive me to another hospital about 45 minutes away. My gall bladder had abscessed and ruptured. I ended up being in the hospital for 8 days. The first 2 days, I was given IV antibiotics to try to bring the infection under control so I could have surgery. I also had to have part of my liver removed where the gall bladder had recessed into it and created another abscess. The infection spread to my pancreas and destroyed most of the cells that make insulin. I have a 14" scar down the front of my body to remind me of the experience, as well as having to inject myself with insulin to stay alive.
The surgeon told me the pain I was feeling in the middle of my breastbone was from pancreatitis. The pain in my shoulder was from my gall bladder. The pain in my side was from my liver. The stomach and abdominal pain came from my digestive system shutting down. Ironically, I didn't have a hiatal hernia or excess stomach acid. During all the tests I had in the hospital, it was discovered I have Crohns disease. That at least explained many of the digestive problems I'd had most of my life. What wasn't caught was the gluten-intolerance, which I wasn't diagnosed with until just a few months ago.
If you feel something is wrong, trust your instincts. Keep pushing until you get some answers that feel right. I knew something was very wrong with me, but I gave up too easily, and it almost cost me my life. I'm fortunate that I ended up with a good surgeon and doctor. Sometimes you have to weed through a lot of bad doctors to get to the good ones.
I used to think it was sugar that triggered my appetite. If I made a pan of brownies, I could eat just about the whole pan without even batting an eye. Once I started on them, I couldn't stop. Now, I know it was the gluten. Just like you, my appetite has changed since going gluten-free. I'm satisfied with smaller amounts of food. I can make gluten-free brownies and only eat one and be satisfied. I'm also a diabetic. It used to be such a struggle to eat low carb and still be hungry or unsatisfied and have my blood sugar still be hard to control. I don't count carbs anymore. I eat rice, corn tortillas, corn chips, tortilla chips and potatoes. I make gluten-free bread in my breadmaker, though it's one of the things I eat sparingly. Not only has my blood sugar started to stablize, I've started losing weight -- slowly, but still losing.
The gluten-free lifestyle isn't easy, especially when you live in a home with other people who don't have to eat the way you do. Several years ago, when I was diagnosed with Crohns, the doctor told me I could also be gluten-intolerant. I didn't pay a lot of attention to that, as I felt dealing with Crohns was hard enough. I attributed my nearly-constant digestive problems to the Crohns. I tried, briefly, to cut out the wheat, not fully understanding there was more to it. I felt it was too hard and quit trying. Fast forward to 3 years ago. My gall bladder abscessed and ruptured. The area of my liver around the gall bladder had started developing abscesses. I was extremely ill and almost died. After I got out of the hospital, even though I still didn't think about the possibility of all of that being caused by gluten intolerance, I was very careful with my diet, leaning more towards low-carb and not eating wheat or other grains. Gradually, though, I started slipping back into old habits and eating wheat-based products and having health problems that just kept getting worse.
A little over a month ago, I tested positive for gluten intolerance. I took it serious. For the first 3 weeks, I felt fantastic. Then, I started not feeling so good, again. It's hard to stick with this diet when you're feeling lousy and wanting comfort food, and you haven't developed a taste yet for new comfort foods. To make things worse, I broke a back molar and can't get into the dentist for a couple of weeks. It hurts a lot, and I'm feeling really vulnerable and wanting to call it quits -- with the gluten-free stuff and the Crohns and the diabetes (yes, that's also a result of the infection from 3 years ago). I want to give up, but I can't. I have a developmentally disabled son who needs me, and I don't want to end up sick and in the hospital like 3 years ago or dead. That's why I take my insulin every day, even though I hate needles with a passion. That's why I stay away from gluten, even though I could really go for a McDonalds fish sandwich right now.
Hang tough. Falling off the wagon hurts a lot more than staying on it.
I've been gluten-free for only a month. I felt really good the first 3 weeks. This past week, I've felt absolutely horrible. I'm sure it's my body's reaction to detoxing. Gluten has been damaging my body for a long, long time, so the healing isn't going to happen overnight. It may be the same with you, and it's just going to take time. Maybe I'm unusual in that I felt so good at first, and I want to get there again, and I'm willing to stick with the diet through this rough time to get back there. Focus on your goals. Mine are to heal and feel good. Get some support (here is a good place). Vent when you need to (here is also a good place). Drink lots of water to say hydrated. Things look and feel worse when you're tired, so get as much rest as you can (not easy when you work and take care of a family). Just hang on and don't give up.
Hi, Alyson. I'm not from Minnesota--quite a ways south in Oklahoma. I do understand what you've been going through. I was diagnosed with Crohns disease about 15 years ago, after spending most of my life up to that point being told I was faking it whenever I had a flareup. Even after being diagnosed, I had doctors tell me I wasn't really sick or it was all in my head. A little over 3 years ago, I went to the emergency room in severe pain and sicker than I'd ever felt before. After they took some x-rays, the ER nurse stomped into my cubicle and informed me that I didn't belong there, and I wasn't an emergency. She claimed I was just constipated and should have gone to the pharmacy and bought an enema, rather than taking up valuable space for REAL emergencies. To make a long story short, I had developed abscesses in my colon, gall bladder and liver, and one of the gall bladder abscesses had ruptured.
I've always had problems eating whole grain wheat and other grains with gluten, but tested negative for Celiac. I frequently get an itchy rash on my sides and lower legs, similar to what I've read is associated with gluten-intolerance. I thought maybe the tests were wrong, not knowing I could be gluten-intolerant and non-Celiac. My current doctor believes gluten may be the primary trigger of my Crohns flareups. I've been gluten-free for a couple of weeks, and I'm noticing a little bit of improvement. The kicker is I'm also a diabetic (the infection from the rupture damaged my pancreas, so I have to take insulin) and need to limit my carbs. My family, friends and people I work with are always pushing food at me. They think that just because somthing is sugar free, it's okay. Well, it's not! Sugar free doesn't necessarily mean it's low carb or gluten free. Now that I'm beginning to feel better for a change, I don't want to end up hurting again by eating something with gluten or sugar in it. Why do people get so offended when you won't eat just one bite of something, even when you explain to them how harmful it is for you?
Anyway, it's nice to meet you, and I hope you find someone close to home you can connect with.