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 initially decided to be nice and sweet, and remove my post to make you happy, but then I thought about all these other people saying whatever they wanted, and I didn't see you reprimanding every one of them (or did I miss all of those?).
Why all these other posts go on and on . . . and no one stops them, or bans the argumentative people, but when I point out the truth -- that it's not nice for Red to condescend and call us "you poor things," or that this quasi-research isn't as private as Red lets on (every single person with a computer and the Internet can read whatever you answer here) -- out comes the reprimand. Is it personal?
One last thing, and then I'll sign off permanently (unlike Red, who promised to leave, but never did). Since you've noticed that Red is the common denominator in all of these arguments, why not deal with the root of the problem? There's a "Red" on every forum, from arthritis to aplasia. The "Reds" of the Internet upset people who are there for help, who are sick, who are trying so hard to make their lives better. Good people leave, rather than be hassled daily for going to doctors, following treatments, and trying in the only way they know to get healthy. But somehow the "Red's" of the forums convince moderators that they have every right to be there, and tell everyone how victimized they are because they get no respect. Moderators need to learn to do their jobs, not just say, "Quit it." Wouldn't it be easier to throw out one bad apple and save the rest of the barrel? (We could make a nice big gluten-free apple pie to celebrate.)
Signing off. No need to reply, since I won't be back.
Oh, you're after my heart! OK, not like that, but you know what I mean. This is what I'm all about -- back to basics, whole foods, one ingredient in it's natural state. It's always safe to get a potato, some canola oil (and I go organic for both), some sea salt, and make your own fries! Or chili, or burgers, or whatever . . . I also think part of my reasoning is that for too many years, before my celiac disease diagnosis, this poor old body was abused by gluten. Now I can do it a favor and make up for it. I treat it kindly.
That's all -- already added my teensy advice at the top. Just had to say, "Right on."
Yes, after 10 years of this, I still have questions. What about maltodextrin? I don't eat stuff like this, but I don't let gluten in the door, so I've always said no to maltodextrin on a label. I know malt, malt flavoring, and malt vinegar are usually from barley, and dextrin is sometimes corn and sometimes wheat, so I put those together and have always felt it's unsafe (not gluten-free).
Any words of wisdom here? Gluten or not?
Thanks in advance,
P.S. My daughter will love all of you forever is you say gluten-free!
Since we were talking about this on the McD's and BK post, I thought I'd start a new one to continue that . . . I'll only be there for 4 days, but at least eating won't be an issue for once in my life! Looking forward to the indulgence!
Anyway, here's a good site:
The descriptions really give you a good idea about them.
I think you mean me, Richard? I assume so, since I'm the only one talking about avoiding MFS.
Am I missing much? Oh, I don't think so! I eat very well, thank you -- probably better than most.
My mottos are, eat to live, not live to eat, and eat only food (no chemicals, steroids, hormones, pesticides) . . . And in doing all that, I also easily avoid gluten. Finally, I also can't have eggs, soy, or dairy, so by the time I get through that list, what's left, right?
Thanks for thinking of me, though . . . you can have the "goodies" (or "baddies," depending on how you look at them) for both of us! And I am planning my binge at the gluten-free restaurants in Manhattan next month. Even the most devout take a vacation once in a while. So I'll get my treats, and then, back on the wagon.
I've had DH on the back of my neck often (at the hairline), backs of my knees, and once even on my stomach! This was after inpatient surgery, back when I used to be really clueless and believe that hospital dieticians DID know how to keep my meals gluten-free. So, even though my tummy was killing me, I still went to a dermatologist, who did a biopsy of the skin (2 more stitches for my tummy! ), and it came back DH. Then I knew I'd been "glutened."
It can be ANYWHERE! And miserable -- all that burning and itching! Argh!
I'm new to the group, too, but not to celiac disease.
I'm sure there is everything you need somewhere on this site, but the really fast low-down is below. I keep this "note" on my fridge, since we have a gluten-free household, and even occasional visitors aren't allowed to bring gluten into the house:
The gluten is in wheat, rye, barley, oats ("WRBO")
In addition to things that list those four plainly,
there is WRBO (therefore, hidden gluten) in other things:
Modified food starch
Soy sauce or soy sauce solids
Malt or malt flavoring (usually made from barley)
Dextrin (often derived from corn, but sometimes wheat)
Caramel color (frequently made from barley
-- this means watch those colas and dark soft drinks)
Brown rice syrup (frequently made from barley)
As far as beans, lentils, etc, if you are buying them uncooked in a sack, and they are just beans, for example, they are safe. But if you bought a can of baked beans, it may have modified food starch or other gluten ingredients. Read VERY carefully -- it often won't say "gluten" even, just like a bag of flour (pure wheat) doesn't say it. We have to learn where it is. I only make my foods from scratch, but others in my household who are not celiac disease (but still have to abide by the gluten-free rules! ) buy processed foods that are safely gluten-free. Just a matter of learning the basics (above, in bold -- maybe print it out?).
I've been diagnosed for 10 years now, and have good years and bad ones. I am having a tough year (just tough in dealing with it) now, although the two before it were fine. Wonder why . . . ? Maybe because I can no longer do dairy, soy, and eggs? Really feeling the limits of diet.
Anyway, I liken it to a 12-step program (no, I'm not making light of alcoholism, which is obviously a far more serious problem than celiac disease), but meaning it's just "one day at a time" for us. Wish I could say that after a while you get used to it and then it's all downhill. Also, whenever I change or expand my social or work circle (new job, for example), I have to keep facing all the issues I did at diagnosis all over again. Tired of it all.
Well, that's why we have this place, right? At least here there's a group of people who "get it."
Hang in there!
(I live these little faces -- can you all tell?!? )
Well, I guess that must be an abbreviated description -- sorry I don't know it as such. The full typing assays, and my own molecular diagnostics reports list them fully:
"The majority of celiac disease patients carry the DRB1*0301- DQA1*0501- DQB1*0201 haplotype (the DR3, DQ2 haplotype) or are DRB1*11/12-DQA1*0505- DQB1*0301/ DRB1*07- DQA1*0201- DQB1*0202 heterozygotes (carry the DR5-DQ7/DR7-DQ2 haplotypes). Almost all the celiac patients who are DQA1*05 and DB1*02 negative bear the DRB1*04, DQA1*0301, DQB1*0302 haplotype (i.e., DR4-DQ8 )."
So, unfortunately I can only answer your question with another question: are we referring to the same thing? I think so. But thanks for replying.
Very good! Aren't you lucky! My daughter always checks, even though she doesn't have celiac disease (that we know of yet), but just because we have a gluten-free house, so she can't bring take-out home if it has gluten.
And "SuicidalTurtle," thanks for the recommendation on the restaurant -- my mouth is already watering. My brother and his wife are also spending the week with me in NYC, so places like that will work for everyone. Any more suggestions, anyone??? This trip is going to be a gastronomic delight! Won't be able to fit into my clothes by the flight home.
Watch those things -- my daughter went to Burger King the other day, and said that the little "hash rounds" have modified food starch in them. I'm assuming you've checked and there's none in McD's. We have a gluten-free household, and my daughter also told me that the frozen kinds in the grocery store often have MFS. Yes, as it's been pointed out that most MFS is safe, but I make it a personal rule to never touch it, regardless.
Oh, here's a place in Manhattan that I can't wait to try on that trip:
I already called and talked to them on the phone, and they have two separate kitchen areas, separate cookware and dishes, and so on, so they understand cross-contamination. I'm looking forward to this one!
Nope, I personally wouldn't do that. I figure they make the "bunless" burger on the same counter as the regular ones, and no doubt they pick up crumbs and residue. npth from the counter and from the gloves they wear making all the burgers (bunned and bunless). Too fanatical? Maybe, but that's the way I do it. And who knows with their condiments? Or Arby's pressed roast beef -- lots and lots of lunch meats have modified food starch in them.
I have eaten out so rarely in the past three or four years -- I say I "never" do, but in fact do eat out maybe once a year, something totally safe (trust me -- I'm fanatical!).
But I'm planning a trip to Manhattan in March, and have already found a few gluten-free restaurants and coffee shops. Looking forward to that! (Check out http://www.happyhappyhappy.com -- they are gluten-free and dairy free. You can't bring anything into their shop. They even make their own almond milk for the coffee. And the food looks luscious! I think I'll get a hotel room nearby, and just eat there three meals a day )
OK, rambling -- hope that answers it from my perspective?
I was just reading the HLA types that are responsible for celiac disease, and then dug mine (printout of my genes) out of my file drawer (I have them because I was tested for a bone marrow transplant). They listed several HLA types on the site I was reading, and say that almost everyone with celiac disease has one of those in the first group, but the few that don't almost always have this other one. Be darned if I don't have both -- one in the first group, and also the one that is the "back-up!" Unbelievable, huh? Guess I was just bound to get celiac disease.
So I was wondering how many also have the gene that causes celiac disease, or if you were tested?