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
Thanks so much for all the great responses! I haven't been on iherb.com, but it looks fantastic and will likely be a lifesaver. BelleVie, thank you for the reminder that anyone who doesn't take the time to understand truly isn't worth the trouble. It will be a tough adjustment with multiple likely slip ups in the beginning, but I think it will be a truly rewarding experience. Survivormom and luvs2eat - I wish I could bring you with me!
Please keep any advice coming - this forum is so incredible!
I agree, that is sad!!! I feel truly blessed to have a husband who has a digestive disease as well. He totally gets it, as do any friends who were around when I was diagnosed (I was sooooo sick, and very very pale and thin). Both my husband and I see media in this vein, and it's so disappointing. Ignorant people sure can be jerks! I've had ex boyfriends tell me I should "suck it up", it's just a little diarrhea!!!
I am moving to Grenoble, France for work. From what I hear, many French don't believe in celiac and gluten intolerance! I'm very nervous, and am considering bailing on the job! I am very sensitive to cross contamination (my house is entirely gluten free and I don't eat out, or many packaged gluten free foods). I feel pretty good about feeding myself in my own home since the markets there are very good, but here are my concerns:
1. What to eat while traveling in Europe
2. Since France is a big food culture and socialization is mainly food related, I'm worried I won't be able to make a good social circle (especially if many people thing "gluten intolerance" isn't real).
3. Non food items that are gluten free, like soap, shampoo, toothpaste, floss, etc
4. Physicians and dentists there having knowledge about gluten-free medications and gluten free dental products for dental visits.
If anyone has any insight from either living in France or visiting, it would be much appreciated. Thanks in advance!!
I'm having the hardest time playing with my rabbit without getting sick! He's a really sweet animal and I've had him 5 years and really, really don't want to part with him. Whenever I take him out a lot and spend a lot fo time with him (which he requires - he's needy!), I get cc symptoms. This has been going on for a year and a half now since I went gluten free. Please help! This oscillation of me getting sick followed by not playing with him for a couple weeks is not good for either of us.
I definitely had problems like this when I was first diagnosed and when glutened now - even if it was only a small amount. It was AWFUL! I mountaineer, so I went from 20+ mile and crazy elevation gain hiking/climbing trips to barely being able to move around my apartment. Do you have edema? Bad edema days make me feel weighty and sluggish (and I am weighty with edema - I lost 15lbs of water weight within 4 days of going gluten free - seriously not kidding!). Stick to the diet, especially if your IgG level is super elevated. I had a positive biopsy but my only positive blood test was the IgG which was 4x higher than the normal level. IgG's are not specific, meaning they can bind to other similar proteins in addition to gluten. I started out on the SCD diet when I was first diagnosed because I was reacting to all grains and some other proteins that are supposedly similar to gluten, but now that my antibody levels are normalizing I've been able to start eating more. Sorry that was a bit rambly - it's getting late over here!
Are you sure they were hives? Did they show up immediately or fairly soon after? It definitely sounds like an allergy, but I've had problems where i touch gluten and get a dry itch rash ~2 hours later. ick. I really hope you figure it out!
Some of us are more sensitive than the 10 or 20 ppm limit they put on gluten free foods. I have only a small handful (literally small, maybe 3-5?) processed products I can tolerate. It's also possible that you have other intolerances. Have you tried giving up dairy? soy? fructose?
I know for me there was a "grace period", where cutting out gluten as an ingredient in anything but still using the same pots and pans (though thoroughly cleaned) was totally ok for me, and definitely helped me get a handle on things without an added pressing stress. After a while gluten-free, my sensitivity and my reaction got stronger, so I definitely had to buy all new pots and pans. I tried scrubbing them and bleaching them (since it denatures proteins, not sure if it works on gluten but it made me feel better), but still found that many of them bothered me. Definitely replace scratched non-stick pans, cutting boards, and wooden utensils and boards. I found I was ok with unscratched glass though - after scrubbing multiple times and bleaching. In general, I tend to be more sensitive than most I think.
My staples: rice, meat, fish, eggs, nuts, canned winter squash, leafy greens, mushrooms, and a few other vegetables. That's about it, but there is a lot of variety just in those categories. There's also fruit, which I dont eat because I have a combo of oral allergy syndrome and am still fructose intolerant as part of the healing process from celiac. Do you have oral allergy syndrome? That might be worth looking into. In the summer, I can't eat melons, zucchini, bananas, sunflower seeds, or avocados because they cross react with local pollens and make my mouth tingly and itchy. I avoid honey during the pollen season too. Just go for whole foods rather than packaged crap
I've had a lot of similar problems. I'm 9 months gluten free now, and cannot eat most grains (or at least in any reasonable quantity). I too have ended up on a pretty much paleo diet, and that has helped a bunch! Since getting things under control that way, I've been able to see some of the non-paleo items that I can still eat - for example sorghum and can sugar.
For me, I felt immediately 90% fine after going gluten free, but within 3 months or so I was having nasty gluten like reactions to soy and dairy. If the cross reactivity thing is true, I suppose it could make sense that the antibodies with the ability to target other proteins could latch on to these other foods and produce antibodies that might have more of an affinity to them (just biologically educated speculation). Either way, I've had to eliminate all the foods I was eating in large quantities at the time of my diagnoses, eggs, soy, dairy, nightshades, legumes (which I have just been adding back with no problems!), peanuts, and a couple of vegetables I may have been eating too much of on a compromised system.
It takes a lot of time to figure it out, but as soon as you can get 5 safe foods (pure ingredients), you have a base you can jump back to whenever you're sick to try out others. Hang in there and good luck! I promise it gets better, and I was a pretty bad case to start. It's possible you're becoming more sensitive to gluten too (not too uncommon it seems from this forum), and food that were ok with 10ppm gluten before may now have too much gluten for you (I had this happen to me).
I have to chime in - 6 months gluten free, and I'm also so bloated all of a sudden!! I figured out it's fructose, but I can't seem to handle any carbs either. Paleo works great, but it's difficult to maintain while traveling and on backpacking trips. How long did this annoying bloaty phase last for you more healed folks? Nice to know I'm not alone, but I'm sorry you guys are having these problems too.
I agree, face mask and goggles! Wear as much clothing as possible, eat indoors (or even in your car!), change clothes often, wear a hat or a bandana. Rain shell? that should brush off easy... Good luck!!!
Ooo, how about eating food you dont have to touch, like putting your face in the bag you packed it in or something. Or gloves to eat.