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
Hi FreeMe808! Thanks for the thanks! Its so gratifying to see any posts...old or new... help somebody else out! I had forgotten about this post ...and all the babbling, but reading it now... a few years later... WOW, I've come a long way....and mostly without doctors help, mostly kicking and screaming my way to my diagnosis. They didn't want to even consider it, and I was right. The doctor looked pretty sheepish when he told me my results of biopsy, etc. Interestingly, he pulled my husband aside when I was in the "recovery" area, and told him ..... she can't have ANY DAIRY EVER! ... Not even a spec of powdered milk in a mix or in a piece of chocolate, etc. And he'd been very firm about that to me, as well. He never did tell me why that was such a biggie ,but I don't touch it with a 10 foot pole, between that and gluten being removed from my diet, and figuring out a few other food allergies that I always suspected but that were never confirmed. Now I'm doing great! Who knew that when melons made my throat itch and made me hoarse... I was allergic to them. I'm so dumb ... I just always laughed it off and ignored it. Sheesh. The best thing I've learned to do, is to listen to my body. It knows what it wants and likes and what it hates....and it definitely lets me know! Hope you're doing great too! On a final side note.... I haven't been to the doctor except annual exam...since going Gluten-free Casein-free....and I've never felt better! Blood tests that were all out of whack are now perfect... It's just amazing.
I'm a tomatoe lover too,! And with multiple food allergies, along with celiac disease, I was sad to find that tomatoes and I don't get along so well. BUT... because I'm stubborn, and do ridiculous amounts of research about everything...and always have... I decided to do a little research and try a few "tests" ...which I often do, to broaden my "safe food" list. After some trial and error I found that I can tolerate quite well actually.... Roma tomatoes ... IF ... I cut out the fleshy center and rinse out the seeds, essentially leaving the outer tomatoe without all the "reproductive seeds and juices". Its amazing what a difference that has made! I can eat them with no problem if I do this little bit of prep work. Just take out the seeds and rinse .... and I'm good to go.
Nobody was more surprised or happier than I, that I could still eat tomatoes! I put them on sandwiches, and in salads daily...with no more issues. I haven't tried this with other varieties...although I'm planting 3 different varieties and will try this with them, as well to see if I can tolerate them. Hope this helps you!
When I finally got brave enough to try eating out, my husband and I went to PF Chang's which is fabulous in downtown Sacramento and Roseville, if you're near there...give it a try! They use special plates with PF Chang's logo on them to signify gluten free. The waiters are all trained, and immediately bring gluten free soy sauce, etc. I did get glutened once, when I didn't notice they brought the lettuce wraps on a regular plate and not a logo plate. Now I'm very aware and make sure that's what my food is served on.
Having, good luck there...we decided to try Chipotle's across from Sunrise Mall. We had seen that they advertised gluten free food, and I was very excited to have another option. When we arrived and waited in line, I keenly observed the crew behind the counter. All had their gloves on... good sign, right? So I watched the first person grab a flour tortilla, and slap it down on the paper in from of him and grab a spoon full of beans and smear it on the flour tortilla...and then toss the spoon back into the beans. Clearly, the beans were off limits. Next he grabbed a spoonful of rice and did the same thing, although the spoon didn't touch as much of the flour, back in the rice it went. BUT, I was hopeful that maybe I could have some meat and maybe some lettuce and tomatoes or something pretty basic. As that flour torilla was passed along to the next person, she grabbed the edges of the flour tortilla and turned it on the paper... guess she didn't like the angle it was facing. Then she jammed her flour contaminated glove into the lettuce tub, and then into the tomatoes and what ever else.... THEN she folded the flour tortilla and rolled it up... wrapped it in paper and grabbed the next one coming down the counter... again jammed her contaminated glove into the lettuce, and cheese etc... This went on for 5-6 orders before we got to the counter.
My husband, who is not gluten free, ordered his lunch and I declined. When we got to the register ... the MANAGER of the Chipotle on duty at the time... looked at the order and said... Is this all your ordering? I said, well, yes it is. I had hoped to dine here as well, but your employees have cross contaminated all of your gluten free food. She looked at me and laughed flippantly and said... "Yeah, I guess we should be more careful, huh?" And that was it! That was all she had to say about it. She didn't care. She didn't apologize, and certainly didn't make any indication that she would attempt to change anything. I would NEVER EVER eat at a Chipotle's after that experience.
There may be some places that are okay, but I would watch before ordering. I was much happier to go home and make my lunch, than to be sick for 5-6 days... and I would have been, from what I saw. Just a heads up.
This sounds like it could be Dermographism. Not a lot of people have it... I'm a "lucky one". Along with all my other allergies and intolerances, I was diagnosed with this when I had all my allergy testing. Its something I've had my whole life, and just never really thought much about it, but here are some examples: When I was little, my brothers and sisters and I would be playing and we'd write "notes" on our skin with our fingers...well my brother and I would (he has it too) ... skin would immediately welt and the writing would stay there for a few hours.
If I cry, my eyes immediately swell up, and get really puffy. Once they swelled shut and I looked like I got in a fight with Rocky... just from crying. It took two days for the swelling to go down and for my eyes to start looking a little normal. Yeah, I think gluten had a huge impact on that too, because once gluten free... I don't have as much problem with that anymore. Now, things that would make my skin immediately react and swell, don't as much. I'm still hyper sensitive to things but the swelling is a lot less now.
For me, generally I have symptoms in 12 to 24 hours if its gluten, and usually feel really crummy for 2-3 days, and semi crummy at days 4-5 ...and then pretty much back to good again.
Something to remember and think about is that if you react to something immediately to within 2-3 hours at the outside, it is generally an allergic reaction, not an intolerance. So if you're reacting to something that fast, you might want to see an allergist. Lots of people don't really understand the differences between allergies and intolerances. If you have both, you should learn the differences to help you identify what's going on with you.
I have Celiac, along with intolerance to dairy of any sort, and multiple food allergies, andwith the allergies, I react very fast (immediately to within 2 hours). If I get glutened, 12-24 hours have passed, before I notice it...and then I REALLY notice it! Its not fun for the next 5-6 days. Hope this helps a little.
Hey Mushroom! It's great to see you! Nice to see faces that helped get me through those terrifying, just learning stages of testing, and coping! You all made such a difference, and for that I am so grateful.
Oh yeah.... dittos on most of these posts! GERD, IBS, colitis, diagnosis, just like Irish Heart (HI Irish... long time no see! ) ... and for me, going gluten free, and dairy free (dairy probably had a bigger impact on stopping GERD) along with eliminating coffee, citrus (orange juice, lemonade, etc) and also eliminating pork, which I was surprised to learn that I'm allergic to... all of those things made a HUGE difference. In fact I would say .... if I have GERD symptoms once or twice a year, that would surprise me. Its essentially a thing of the past for me, but I am VERY vigilant about eating only things I have tested and I know don't make me sick in any form. My blood tests were all out of whack when I was diagnosed... including having high levels of eosinophils (eosinophilic esophagitis) which they found correlated to Celiac Disease in I believe it was a study in Netherlands. It was something close to 50% of 405 kids tested had BOTH! Anyway... like I said, almost all my blood tests were out of whack when I was diagnosed, and six months later.... ALL NORMAL!!!!!!!! .... ANd STILL normal! Keep in mind... I was SO SICK of being sick that I literally did not put ANYTHING in my mouth that I knew would make me sick. If I did get sick a reviewed what I ate, until I could eliminate the problematic food. A lot of people don't think they need to do this, and suffer instead. I wasn't willing to suffer anymore once I learned that food could make me so sick (ei: gluten). For me that opened up the though process of... okay if gluten can make me so sick...what if something else is also making me sick. In my case, it turned out to be true on many fronts. Along with gluten and dairy intolerances, I have multiple food allergies, ranging from apples, peaches, cherries, melons, celery, carrots, shellfish, and pork...to name a few. I also found out that High Fructose Corn Syrup is the devil! That makes me sick too... and I avoid it at all costs, along with food dyes, preservatives, and any "itol" fake foods, like sorbitol (doctors orders). Anyway, long story short, YES you will get better, but there is no magic bullet. It takes time and persistence, to figure out what your body is reacting to. Once you figure that out, you will no longer have GERD. I'm living proof of that. Best wishes to you!
It's been quite some time since I have posted here, but having just hit my two year anniversary, I had to pop in and see how everybody is doing. So "Hi", to all of you who remember me, and greetings to the newer posters!.
I have been on a long journey to get to today, as most of you have, and I've learned a LOT! I have learned that you have to take your health care into your own hands, to a certain extent, and not wait for or expect doctors to have answers, because often times they don't. I did endless research, and "testing" to figure out what was making me sick, food-wise. It is still a work in progress, but since my diagnosis, and going gluten free, and dairy free (which in my case is just about as serious as the gluten issue, and was wreaking havoc on my insides), I have had allergy testing and found that I have multiple food allergies (probably caused at least in part by gluten issues, which caused leaky gut, etc.) But it turns out that I am allergic to a plethera of fruits, apples, melons, pears, cherries, peaches, etc, and celery, carrots, seafood/shellfish, and pork to name a few. Life is challenging and I have a list of things I know I can safely eat without issues.
I started out with chicken, then I added peas, then rice. Now in the mornings I make a quick satisfying lunch to take to work in my thermos container. So easy and safe! I boil about 1 cup of water with a little salt, toss in a little instant brown rice, precooked chicked, and a can of peas... toss it into the thermos, save the rest for tomorrow, etc. Fast... easy... safe... tasty, and best of all, I feel great! For dinner, I usually have a salad, and I've found a few tricks that just rock! Romaine lettuced chopped up, chopped roma tomatoe without seeds, black olives, sunflower seeds, sometimes a little chopped avocado, sometimes a little chopped chicken or some ground beef. THEN I squirt some LaVictoria mild taco sauce on top to give it a "wet and creamy" texture, and about tablespoon of Kraft Lite Catalina dressing! Fabulous fresh salad, so satisfying and yummy!
Not only do I have the gluten and dairy issues, and the above mentioned additional food allergies, but I also can not tolerate HIGH FRUCTOSE CORN SYRUP .... YUCK AND OUCH! That's brutal nasty stuff! DO NOT PUT IT IN YOUR MOUTH! Makes me so sick! Also, doctor told me not to put ANYTHING that ends in "itol" in my mouth. Sorbitol, etc.... BAD BAD BAD! I also stay away from food dyes, as they also make me feel "icky". On a happier note, my mom called me a few weeks ago and said... "Hey, did you know you can have Pearson's Salted Nut Rolls and Junior Mints"? They are gluten and dairy free! Now I don't eat a lot of "treats" but that was fun news! I also indulge in Gimbles "Scotties" black licorice "dogs' and they also have gluten-free jelly beans!
Ohhhh and here's a REALLY wonderful treat! Dream Rice or is it Rice Dream (non dairy ice cream) has a new flavor... Praline... SOOOO GOOD.... but here's the real treat: Slice a banana, and cut up some fresh strawberries, or any other berries you love, and take baby spoonfuls, about 1/4 cup, of the Praline Rice Dream and toss it in the bowl. As it melts it makes a very smooth creamy sweet and yummy treat, and you don't need much of the Praline for it to taste sinfully FABULOUS! It is to DIE FOR good!
Sorry, if any of you have peanut or nut allergies, because the Praline and salted nut rolls won't work for you, but for those of you like me who are allergic to so many "goodies" ... these are two treats that are fun!
I continue to try adding one food item at a time to my diet to see if I can tolerate it, and I continue to try to expand my list of things I can safely eat, and that is what works best for me, because even though I have celiac disease and can't have wheat, barley, rye, etc... I think I miss dairy more! That's harder for me, and so many of us have both issues. If you are not feeling better being just gluten free, I would suggest doing what I have done over the past two years. Find a couple of foods that you know you feel great after eating... then once a week or every three to four days, try adding a new food... but not more often than that, as it takes sometimes a few days for issues to show up.
Here's another heads up. I thought I had egg issues, because I would constantly get tummy aches after eating eggs. Then I saw a special on the egg industry and found out that a lot of "big box store" grocery chains use big factory egg providers. Now they date the cartons, and you "should" be able to know if the eggs are fresh, but they showed that the outdated cartons of eggs were picked up...repackaged with NEW expiration dates!!!!!!!!!!!!!!!!! UGH! No wonder I was getting sick! I found s new source of eggs from a specialty store that has organic eggs from a "non-egg mill" source, and low and behold... with fresh eggs, I'm FINE!!!!!!! So be careful! Those dirty dogs ... the greedy corporations don't care about health,...they just want $$$, and they don't care who they make sick along the way.
Look at MONSANTO!!!!!!!!!!!! Isn't it interesting that they were so terrified that California was going to pass the GMO food labeling law, that they spent MILLIONS and MILLIONS of dollars just a few weeks before the election to scare people into voting it down saying it would drive up food costs? My mom had an interesting observation about that... her comment was... IF they didn't have anything to hide.... why were they so panicked that they spend MILLIONs and MILLIONs of $$$$ to stop the GMO Food labeling law? Makes you wonder doesn't it? Anyway, I digress....
Two years later, no more sick, no more brain fog, no more tummy aches every day! I work 40 hours a week, which I could not have done two years ago... I was too sick! So things have completely changed in my life! I'm so careful, and prepare my own food. I don't participate in work food events, potlucks, fund raising breakfasts and lunches, etc. I just flat out told my boss and my co-workers, that I have an illness that prevents me from participating, but that I hope they enjoy the festivities. I'm happy and healthy, and they don't really "get it" but they don't bother me about it. I'm just so happy to be able to be at work and not be sick! I feel about 20 years younger than I did two years ago, and that is the honest truth... its just AMAZING!
I have a wonderful husband, and we just celebrated out 4th wedding anniversary yesterday. He's so supportive and thoughful about my food limitations. Traveling is a challenge, but not impossible. I plan ahead, prepare for delays and have backups with me. Bananas are a great meal substitute in a pinch!
Anyway, I hope this post gives some of you some helpful information, food for thought, and last but not least... hope that it DOES get better! I feel totally normal, and the food thing... well you figure it out...what works for you...and you don't miss the gluten or dairy or what ever else, because you feel GREAT! Why eat posion if it makes you sick, right?
Best wishes to all my celiac and gluten sensitive brothers and sisters out there in the world! You are not alone!
Hi to my fellow celiacs... I wondered if any of you have gotten information on Pappy's seasoning? I've been diagnosed and gluten free for 7 months now, and having found out that I have other food intolerances as many of us do...has been a journey. When I was first diagnosed, I called every company I had products from, if they didn't have clear labeling, and tossed everything gluten. I've been trying to figure out what is causing me issues and a lightbulb went off tonight after consuming something I used Pappy's seasoning in.
Have any of you had issues, and more importantly...has anyone gotten confirmation from the company whether or not Pappy's is gluten free? The label looks okay, but I'm VERY suspicious. When I Googled it, I found someone else asking the same question and one response from June 2011 that said they had confirmation from the company that the 50% less sodium version WAS gluten free. I found it ODD that they didn't say they were both gluten-free. I'm going to call them tomorrow, but wondered if anyone had the answer already. Thanks!
I'm curious about others who have double DQ1 as well. My Dad has double DQ1 subtype 6 and has MAJOR issues with ataxia.. balance issues started about 6 years ago...but they didn't put two and two together, walks with a wide gait, had chronic hives for close to four years and no doctors could relieve them. He is considered by the medical community to be "wheelchair bound" although he gets around with a walker and assistance from my mom, but has falls way too often. There are many other things ... difficulty swallowing, slurred speech, arthritis, joint pain... so many things.
After trying to get doctors to listen and test him, I finally went with him to a doctor appointment and asked if they would test him. When they said no, I said... is it okay if he goes gluten free? The doctor said, well, it certainly won't harm him, but its not going to help either. My dad went gluten free in April, and his chronic hives went away, his gait is more normal, his speech is improved, his strength is better. His doctor was stunned to find that out that his 4 years of chronic hives were gone, and is going to try gluten free on 4 other patients with chronic hives that he hasn't been able to treat successfully.
We saw Dr Joseph Murray at Mayo Clinic in Rochester, MN (head of Mayo's Celiac Research Dept and practicing GI) a couple of weeks ago... who said, almost all people he sees with gluten ataxia are wheelchair bound at their first visit, because this doesn't get diagnosed accurately or quickly and there is about a 6 month window from onset to no reversal of neurologic symptoms. I should add to this that my dad was always VERY athletic, agile, active... and for years... you would never have suspected that gluten was doing its dirty work on him. He is now a very different person from the dynamo that he was. Gluten takes its toll in a very very destructive way. Also, people should be aware that 15 percent of celiacs have digestive issues... 85% do NOT. Digestive issues were thought to be key, but they've realized that the people with digestive issues screamed loudly and that's why they were heard... others didn't have those types of symptoms... therefore didn't/don't get diagnosed.... for a VERY long time... if ever. There are so many doctors that are so clueless. Gluten is a systemic poison...and it doesn't affect just intestines (although that is a primary symptom for me personally... it isn't the case for my dad).
Please...if you or someone you love has symptoms like these... and double DQ1... get them to go off gluten PRONTO! It is pure poison to their system. My dad unknowingly ingested the toxic gluten for 80 years and it wasn't until he'd ingested it for 65 years that symptoms showed up.... damage had been done for years and years. My Mom is diabetic and carries the DQ2.5 celiac gene... I have that from her and the gluten sensitive gene from my dad.... an unlucky combination, but I finally was diagnosed with celiac after many many years, and things have turn around 98%!!! I feel like a different person. It scares me to no end that I could have ended up like my dad in 25 years. Don't let them tell you double DQ1 isn't a big deal...its a HUGE deal. There are studies being done ... and in fact a paper was publish about it, but most doctors don't stay abreast of the research papers like they should. You'll find it if you Google it.
I don't know if ALL of my dad's issues are caused by gluten, but a good chunk of them seem to be directly related. And I know what it does to me, and I have 1 DQ1 gene. Good luck to you... hope you find the answers you seek.
These links will help explain things to you. You only have two... one from mom ... one from dad.
You inherited either HLA-DQ2 or HLA-DQ8 from your mom, and you inherited one gene from your dad (he has two but you got only one of his).
So essentially, you have one gene for sure that can predispose you to getting celiac disease... however that does not mean that you WILL get celiac disease... just that the possibility exists.
And if you have HLA-DQ2.5 rather than HLA-DQ2.2 you're in the pool of possibility ... but according to this recent study (below link)HLA-DQ2.2 is not a factor in celiac disease, unless it is accompanied by HLA-DQ2.5 (but not vice versa).
Now that you're sufficiently confused, here are the links.
(PS: DQ2.2 and DQ2.5 are both referred to in general terms as DQ2, however they have a significant difference that causes DQ2.5 to be directly related to celiac disease, whereas DQ2.2 is not unless it is accompanied by DQ2.5) Its all explained in the link.
Good luck to you! Hope you find the answers you seek.
Thanks so much you to for the quick and helpful answers! So nice of you to take the time to share what you know...it really helps me out a bunch! Now I feel like I can proceed with confidence... and figure this out. You're both great! Gotta love these forums for help from great people! Have a great weekend!
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Thanks for your comments, Skylark. I'm really not so concerned about the genetic testing from Enterolab, since they get it done through the Red Cross, and even though they only test the DQB chain... in our case that doesn't matter since I'm DQ2.5 positive and the alpha and beta chains are always connected. If he has the DQB positive, the A will also be positive in his case. I was more concerned with their "other" tests... for food intolerances, etc. I don't want to pay for them to test if they just tell everybody they're intolerant to what ever they request a test for. I will check with the other two labs that you suggested though... and see how the pricing is for the genetic test. Thanks again for taking the time to respond... I really appreciate it, Skylark. Happy Independence Day!
Should have included this with the last post, but forgot. I have figured out how to zero in on fructose intolerance, and I've been lactose intolerant for many decades, but I'm a bit lost and confused how to isolate soy intolerance. Maybe its because I can't think of any "soy" by itself that I eat. It's usually some component of other foods, at least that are familiar to me. I know there is tofu... I think that's soy, but honestly, its not something I have ever bought, nor would I know what to do with it if I did. Anyway, any of you have a good suggestion or two, of how to test for soy intolerance... I'd really appreciate hearing from you. Thanks so much... and have a great July 4th!