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
I'm glad that someone brought this up because I sometimes get these "heart attack" symptoms too - I just turned 30 so I shouldn't be having any problems with my heart. When I have my "episodes" (which have become MUCH less frequent since being diagnosed with Celiac), it hurts so bad that I actually think, "well, this may be how I die..." In fact, it landed me in the ER twice in one day because I couldn't take the pain - the doctors did a ECG which turned out completely normal, so an injection of Pepcid and Ativan was the second choice and knocked me right out. The pain came back 4 hours later. The pain builds up in my chest and comes in waves, but is consistently uncomfortable. Moving somewhat makes the pain subside but I end up engaging in this rocking motion that really freaks my husband out! I have definitely had symptoms of GERD also (burning in the chest and up the esophagus) and that also has subsided since eating gluten free. Do you guys think that the chest pain could be related too? I have varying glutening symptoms so sometimes its hard for me to pinpoint when I've actually been cross contaminated. While I'm sad for everyone else who's had to experience this, its a bit comforting to know that I'm not the only one who goes through this.
I dunno, maybe I'm weird or something, but I don't hesitate to tell anyone why I can't eat their food. I'll say, "No thanks, unfortunately that type of food will make me sick." Of course it leads into other questions, but I'm not embarrassed or ashamed (I'm not suggesting that the OP or any of us are) and frankly I take every opportunity to educate someone on Celiac. If my two minute conversation could potentially help someone recognize their own symptoms (or the symptoms of a loved one) and get them help, then its all worth it for me. This is a very misunderstood disease and diet and I feel satisfied when I can correct information. Its all about confidence. If you explain Celiac with confidence, my experience has been that people listen better and accept what you're saying - the conversation also doesn't turn into a pity session or "oh my god I feel so bad for you." Yes I have Celiac, no, I cannot eat your food, and we can move on with the conversation....it also prevents the same food offerings at future events with these people.
All that being said, I'm not suggesting that everyone should go out with their "I'm a Celiac" t-shirt on and start preaching on street corners. It's all about your comfort level and if you even feel like explaining it that day (there are some days where I'm either tired or annoyed and I just decline food without saying anything else). I just wanted to share because I've never had a negative reaction for sharing why I couldn't eat someone's food - in fact it only led to more understanding on their part.
Welcome to the forum! You will get a ton of great advice on here - so many people are willing to help and share their experiences....it also may make you happy to know that going gluten free to help heal your system may also help with your fertility. A common symptom of untreated Celiac is infertility and you will see a lot of people on here had much more success with getting pregnant after they went gluten free. There's a pregnancy forum on here where you can get great advice. The good thing is that now you have a huge piece of the puzzle figured out - I feel very positive that a lot of those symptoms that you were describing will get better once you begin the diet. I had pretty bad eczema that would come out of nowhere. Started the gluten free diet and it disappeared. Same with the fatigue, swelling, and water retention.
Definitely read the Newbie threat - I know you mentioned stopping the breads and pastas, but there are TONS of other things that have gluten hidden in them - gravy, sauces, make-up, toothpaste, shampoo, play-dough, fake crab meat, etc. Remember, its not just wheat and the obvious sources. You will also need to cut out barley, rye, malt, and oats (unless the oats are labeled gluten free). So beer is off the table now because of the barley. There are some great free apps on smartphones that will help you in terms of checking ingredients and locating places to eat in the area. I use "Gluten Free Registry" which has been a huge help in tough situations. Best wishes to you!!!!
Arlene is right, this is most definitely a grieving process because not only are we giving up the food we love, but also certain social situations, events, and maybe even people that just dont quite understand what we go through. This disease is a life changer for sure - there is no pill to swallow to make things better. Speaking from personal experience, I didn't experience many symptoms at all, and my diet consisted mostly of chicken fingers, pizza, and pasta. When I was told that I had to change my entire life when I didn't feel that bad at all was very upsetting to me, and I still get upset sometimes when everyone orders pizza at work and I'm sitting eating my Rice Chex in the corner (this actually just happened yesterday)......but, here is the flip side....
No, there isn't a pill to make this all better, BUT, some modifications to your diet will save your life. After you've gone through this grieving process, you will begin to see that you will actually feel better, and things that you always considered normal about yourself were actually Celiac symptoms that have vanished or gotten better. If you keep reading posts, you will see that many people here on this forum were near death before getting diagnosed and changing to a gluten free diet. The diagnosis was actually a relief for most of them. As you continue on you will begin to see that a lot more gluten free foods are being made available to us that are actually pretty good - I love my Udi's bagels and I don't feel the urge to have a regular bagel at all....same goes for pizza and chicken fingers which I now cook in corn flakes (I've had multiple people tell me that it tastes better than bread crumbs).
KFC and LJS make some pretty yummy food, but its not worth getting osteoporosis, cancer, or diabetes over (among other things). Yes, it will take time to adjust to this new lifestyle, and even though it may be hard to believe now, you too will adjust in time. Keep talking with people on the forum, especially when you're feeling down - we all have been there and can lend an ear.....
Please feel free to personal message me at any time...no one should feel alone when dealing with this. I'd be more than happy to talk to you or even just to listen...best wishes to you and we'll be thinking about you!!
So sorry that you've gone through this much! It definitely sounds like you've been through a lot and so many people on this forum feel your pain. As far as the endoscopy goes, just as Belle said, its simple and there is no pain involved whatsoever. You don't even realize that it was done - I've had two and I would take that ANY DAY over another colonoscopy. But I understand that the gluten challenge is provoking anxiety for you.
Silly question, have you ever tried taking a Benedryl or other anti-histamine medication when you break out from these topic exposures? If so, what happened? If you were having an allergic reaction, an anti-histamine would have provided you with at least some relief. Keep in mind that you could potentially be ingesting the gluten from the shampoo/makeup by touching your mouth after handling the gluteny items.
And you said that you had the genetic test for Celiac? So you tested negative for either the DQ2 or DQ8 gene? If that's correct, then its my understanding that you cannot develop Celiac disease if you do not have this gene. (someone correct me if I'm wrong). My gene was lovingly passed down from my mother (who does not have Celiac, lucky duck) Regardless, like Belle said, you could still have NCGI and should still take that very seriously.
Another thought that I had was that your eczema could be a well known symptom of Celiac called Dermatitis Herpetiformis (see that section of the forum). A small skin biopsy (when the eczema is pronounced) can be done to test if you have Celiac. This may limit the possibility of having to do a six week gluten challenge. But remember, if that biopsy comes out negative, it could mean its just eczema and there still is a potential for Celiac.
Bottom line is that you feel better off of gluten, and you dont need anyone with a fancy medical degree to tell you that. I know its hard to be taken seriously by doctors when its not in your file, but you could always get around that by talking to the pharmacist directly before the prescription is filled and saying that you are allergic to gluten - they will not check your medical file, trust me they will believe you, they just want to make sure they wont give you something that will kill you. I told my pharmacist after she's known me and given me my medications for many years (I was only diagnosed a year and some change ago) and she didn't question it one bit.
Where are you from? You could always head over to the "Doctor's" section of the forum and ask if anyone could recommend a GOOD doctor in your area. Best wishes to you!!
From my understanding, gluten can also be related to depression due to nutritional deficiencies. If we are Celiac or NCGI and have problems absorbing nutrients, then we may not be getting the B vitamins the way we should be. B vitamins are essential for brain and nerve functioning, and if the body is deficient in these vitamins, then the serotonin levels in the brain can get a bit out of whack.
There is a great article in the May issue of the "Living Without" magazine, which is a magazine specifically related to gluten and other allergies. The article is called "Gluten and Depression" and there's a deeper explanation of this linkage. I am a mental health therapist (as well as a Celiac) and I was actually interviewed and quoted in this article. I would post a link to the article, but I'm not able to access it online unfortunately.
I LOVE my GI doctor - he's in Berkeley Heights, New Jersey. Not too far of a drive from NYC, maybe like 20-30 mins away? He tested me for Celiac before I even knew what Celiac was and I only reported minimal symptoms. His name is Dr. Gillin and I've included the website for the practice below. The campus is huge and practice includes any kind of doctor you would need and even an urgent care center, a lab, MRI/X-ray imaging center, outpatient surgery, etc. So when I have to get my endoscopy, I just walk downstairs to the surgical center and they send all my results upstairs to Dr. Gillin. Its super convenient and he takes everything I say very seriously. Knows a lot about Celiac and was even asking about "cross-contamination" when I met with him for my check-up.... I hope this works for you!!
I definitely bloat quite a bit when I get glutened - my family also says that I look pregnant... After this happens and I lay on my belly, it feels like I'm laying on rocks and its terribly uncomfortable. Your intestines need time to calm down and decrease the swelling after being glutened, so I'm not surprised that you're still experiencing the bloated symptoms. Mine lasts for about a week or so, but it eventually goes down - drink a lot of water and don't drink anything too cold, it is irritating to the gut. Feel better!!
I have the EXACT same problem as you - I have always hated veggies (I blame my mom for not making me try different kinds when I was younger). I have a huge texture problem with them and always gag if they're cooked or mushy. On top of that, my texture issue also prevents me from being able to eat most fruits without gagging uncontrollably. Obviously when I went gluten free I knew I had to work some more in just to be healthy - it was a huge wake up call for me. I do my best to sneak them in, like cooking cauliflower and mashing it into a "mashed potato" texture. I add a bit of butter and salt and I can hardly tell the difference, its the one way I'm able to eat cauliflower. I also recently tried spaghetti squash - you cook it in the oven and it pulls apart like spaghetti strings - again, add a little butter and salt and its something that I can handle. I definitely supplement with vitamins but this is a daily struggle that I'm trying to overcome. I completely feel you on this one!!!! Best wishes!
I actually am leaning the other direction and think it may be something else - you said that you had a low grade fever which is more likely a sign of an infection of some kind rather than a glutening. Someone please correct me if I'm wrong, but I haven't heard of anyone reporting a fever as a symptom of glutening. It sounds like you could have had minor bacterial or viral infection. If you're still feeling crummy, see if you could get an antibiotic prescribed to you just in case....feel better!!
Welcome to the forum!!! I have been gluten free for about a year and three months now after my diagnosis and it is a long road but it is a worthwhile one. I was diagnosed in May of 2012 via blood work and endoscopy - then I had repeated blood work in November of 2012 to see my progress after 6 months. My TTG level went from over 100 to about 20, and by the time I went for my yearly follow-up, my blood work came back normal as well as a normal endoscopy. Everyone heals differently based on the amount of damage you have. I agree with the other posters - get your vitamin levels checked and I would also suggest a good digestive enzyme supplement - they helped me a lot during the healing phases. Good luck!!!