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
If it's labeled "gluten free" then there is still 20 ppm (parts per million) contamination allowed, though I am SURE that some don't test and are much greater. If it is "certified gluten free" then they are allowed 10ppm. I still question testing sometimes. I react to 10ppm still. My threshold is somewhere between 5ppm and 10ppm, but 10 being too high. Most people are not as sensitive as I, so for most 10ppm is probably okay. It DOES however add up, so watch out for that...10ppm for breakfast, 10ppm for lunch...etc....suddenly you are way over the limit. I bought some rice rolls from Costco not long ago that were gluten free. I called on them, because I was feeling bad. They told me that they tested, and the contamination tested at 7ppm. There was 6-8 rolls in the pack. I said wait a minute, is that "per roll" or "per package"? He said that he thought that it was the package, but he would double check to make sure. He called me back...and it was actually per ROLL! Holy snikeys! I was eating a couple of rolls...or 3 at a time. It also adds up for me from day to day...not just during the course of one day. A little bit everyday seems to build up for me also. Beware...I also bought some organic fruit snacks for my kids, but I was eating them too. It said gluten free, but I called to get the contamination information. She assured me that they tested to 5ppm an below. Well...kept getting sick on those too. Same thing with some organic gluten free popsicles...sick every time. I called, and they said that they don't test at all...but they labeled it gluten free...so how do they know if it is (or the if the ingredients that they order are really free of gluten). They do not.
Lisa...do you know anything about which labs are best to run tests? I read an article about the MD who owns Enterolab, and he has celiac disease. Other than that...I think that which labs do a better job...makes a difference. Right?
That's awesome, thank you! I have started to collect data for many of my doctors, but the infertility specialist is the first that I have approached. He is a very good doctor:) My new neurologist is more informed about gluten, because he has the same issues. He says that we are beyond medical borders at the moment. I am going to forward info to my old neurologist and family physician. I could still use ANY and ALL articles that any of you can find!!! You know that doctors like to see studies and hard facts from credible sources! Keeping them informed of research is a great idea! I just need to know how I stay informed of the latest research?
HI. My infertility specialist that we used a while back...is asking for the proper tests to order for screening his patients for celiac disease! He listened! I am not knowledgeable on what specific tests he needs to order. Does anyone knowledgeable know what I can tell him? After hearing my story since my 2 IVF procedures with him...and now my body is closer to normal...he wants to learn more. NEED INFORMATION AND ADVICE TO GIVE HIM!!! Especially if it's related to infertility, hormones and PCOS. I need an arsenal of articles from reputable sources for him to learn all that he can. My email is email@example.com if anyone needs to email me articles. I am not sure that screening will take care of everyone, but it's bound to hit on a few people here and there. I wish that there was more that I could tell him about all of us that are symptomatic with NO positive results! Thanks a million. Is anyone else shocked that a doctor listened and wants to add it to his practice...WOW!
Hi! Does any other super sensitive have a safe brand of brown sugar? I am afraid to try some organic brands, because it doesn't say anything about whether it's processed in a facility with wheat, etc. I have Simple Truth and Earthfare brand in my pantry that my family uses. I am trying to make some applesauce that I can eat too:)
I have a problem with nightshades too. I get just as bad of reaction as gluten. If I remember right, nightshades contain cytokins which can exacerbate inflammation in the body. Way true for me! Found this out from all of the fantastic people on this forum. Thanks to you all! I have not found any substitutes for them, and I just have to live without them. I am also allergic to garlic and onion. They cause inflammation and bloating. Maybe you should get a blood allergy test if that doesn't work. If I avoid the foods that I'm the most allergic to, and stick to my rotation of the others...no bloating at all. I am often bloated, because I often mess up. Willpower...
Thank you. We use Walgreens, and they are not usually helpful since they just read the ingredient list looking for it. I did that already, but the pharmacists can't tell me whether the main ingredient is derived from a process of gluten as secondary. Those ingredients are not required to be listed, or whether they run it on equipment that has had gluten. I am super sensitive, so the pharmacist is no help. Thank you so much for trying though:)
Hi. I took Cipro (Cobalt mfg) last night for a UTI...and flucanozole (Ivax/Teva mfg). I feel horrible this morning!!! Does anyone know if it might contain gluten? I tried calling both mfg, but they are closed for the weekend. I am being tortured...just trying to see if it's the medication, since I'm due to take it again. Can anyone out there help? Thank you.
I feel your pain! I could not tolerate Synthroid at all. I had horrible headaches and had terrible brain fog. This was before I knew that I had trouble with gluten at all. Well, if it has gluten in it...now I know why. I react to even the smallest amounts of contamination. I put myself in the super-sensitive category on this site, and fortunately those people helped me a ton! Very small amounts build up in me also. After 3 yrs of being on Synthroid and feeling like crap my endo put me on Armour Thyroid. This is the natural version made from dessicated pig thyroid. I must say...THANK GOD!!! I felt so much better, and for the first time...my thyroid was regulated too. My thyroid has been stable for about 3-4 yrs now, and it no longer is an issue for me at all with how I feel. There is a generic version of this too from ACELLA, which I switched to because of insurance. My endocrinologist told me that EVERYONE that he switches from Synthroid to Armour Thyroid love it and NEVER want to go back to Synthroid. That poses the question...why start people on Synthroid in the first place? Why not start them on something natural? That would make too much sense probably. I urge you to go get this prescription ASAP!!!!!!!!!!!! And maybe start checking out the super senstive forum on this site.
Hi. I was in your shoes, and it took me a long time to figure out my issues. Everyone is different. I happen to fall into the "super sensitive" category. Which means that I can't eat any gluten-free premade food that doesn't test down to 5 ppm, and that's rare. I can't eat gluten-free products that even test down to 10 ppm. For example, I can eat a few enjoy life cookies (10ppm testing), but if I eat the whole box...then brain fog and bloating sets in. I find that if my ppm adds up, then I'm glutened. For me...it's not just what I eat in a day...it's over all days. For example, I find out that something has really low grade contamination because over time...I just go down hill. At first I'm fine, and I think that the product is safe. Then 2-3 weeks later, I'm getting worse by the day. This has happened to me with rice milk, almond milk, peanut butter...even though the facility may be gluten free. Sometimes the ingredients that the manufacturers order into their facility have low grade contamination...flours, oils, etc. They may even test the ingredients as they come in, but if they don't test the final product AFTER it's made (as it adds up)...then I always pay for it. I doubt that you are this sensitive, but if you are...then there is help to be found under the super senstive forum. And yes, cat litter and pet food. The cat tracks residue all over the house fromt the litter. The cats and dog lick themselves after eating getting food residue on their fur before you pet them...and they lick you. They must be gluten-free. Just look for "grain free" foods for them. There is plenty to be found. The other examples on this post...I can't eat rice chex even one time without reacting. Anything that is 20ppm is an immediate reaction. It might be helpful if you also got a blood allergy test. I was still having problems, and it turns out that I'm allergic to soooo many foods...meats, veggies, fruits, caffeine, chocolate, yeast. Your immune system can just be whacked out. I have eliminated other foods, and rotate my existing foods on a 4 day rotation. It has helped tremendously with bloating and how I feel otherwise. So, there can be other foods causing you problems as well...most likely...and you will have your own set of intolerances. Not everyone will have other issues, but a common thread seems to be the soy, dairy and corn. A food journal could help, but I needed the test because it became to hard to figure out. My immediate problems were soy, dairy, corn and nightshade foods like potatoes, tomatoes and peppers. That last one took a while to figure out. Mine have also not changed after a few years, and if I continue to not rotate my foods then I can become allergic to new foods that I eat all of the time...which was the trend in my blood test results too. Just take a deep breath, and start over from scratch. I know it's hard if you are busy, but eat only whole foods for a while. Add in only one new food every couple of weeks to see how you do. I get tired of calling manufacturers to get information about their processing, but welcome to our world...has to be done. I will have you a few warnings that I wish that I knew sooner...watch out for rice milk (can be processed with barley), oils (some are made on equipment with wheat germ oil or other...Bertolli good), Amy's products mostly bad for me and others too, Food for life (use barley in their processing, and I reacted very badly). Some celiac disease patients are so lucky to be able to eat the common gluten-free cereals and betty crocker cookies...and Amy's! Unfortunately, there is a group of us who cannot touch them! I hope that you are one of the lucky ones:) Even if you are, I'd do whole foods only for now!!!
I called a couple of coffee manufacturers after I first went gluten free...I was grinding my own beans at the time. They told me that they could not assure me that the beans were not cross-contaminated. They said that the beans might be hauled in the same trucks where other grains were hauled or stored. I asked if they rinse their beans at all...they said NO!!! I believe that company was Millstone, but others also are the same. Also, flavored coffees might contain gluten as additives. I went to Kcups, with the machine. I can't tolerate caffeine anyway, but the Newman's organic decaf seems to do relatively okay with me.
I am definitely interested in more food ideas, so I will email you sometime soon. I am so unhappy to hear that others think that they just get more sensitive over time too...ugh! I was already so limited, and get glutened all of the time because it's everywhere...in spite of my obsessive carefulness too. Do we just keep getting more sensitive until I can't NOT be glutened with any level...ever...and then deal with just being sick all of the time...and then die of related diseases? I know that's morbid! Soooo not happy:(