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
Gluten Free Pantry's French Bread mix is excellent, but if you don't want to bake, I also recommend Glutino's Cornbread -- it's not like southern cornbread, but sliced for sandwiches. Another product of theirs I eat frequently is their bagels, especially the sesame, which are great for egg sandwiches, cream cheese, BLTs, ham and cheese (probably everything except PB&J, though). You can get these in some health food stores but easily online at glutino.com. Freeze them and defrost in a microwave, then toast. They are not cheap, though, so I have learned to not have them all the time, but only when I really start craving a sandwich fix.
Hi: I've been gluten-free for almost a year now and giving up beer (among other favorite things) was also hard for me. I discovered Ramapo Valley's honey-based brew, and I'm fortunate enough to live right near a gourmet beer store that carries it on a regular basis. It's on the sweet side, and you do get used to it, but I don't think I'd be shipping it to my house at a high cost if it wasn't convenient for me to just buy it in a store. Bard's Tale did finally release their beer just a short while ago and I was delighted to find it really tastes like the real thing, a nice ale. Unfortunately, however, I think the overwhelming demand (and good taste) is making it a little hard for the company to be consistent in its distribution. They have a list of all restaurants and stores that supposedly carry it by state on their website, which is www.bardsbeer.com.
What's happened to me is that I've gradually trained myself to like wine a little better than I did previously, and I tend more to have a glass or two of wine with friends or at dinners rather than beer. I know it's hard to give up beer if you are a beer drinker and really like the taste. But as with other food-related gluten-free issues, I think it's more about what the food/drink symbolizes than anything else, and that's the part that takes time getting over. For example, if you are used to going to a pub with your friends and drinking a few pints, it is very difficult to let that part of your life go, and hard to find a substitute, just like for other people it might be sharing that Friday night pizza with their kids, and so on. We need to find ways to adapt, to hold on to the rituals that made the food or drink so important, and try to find other ways of continuing them, rather than insisting it is the beer or the pizza or the pasta Alfredo that is the whole point -- that without it life is just not the same. I am not minimizing anyone's feelings on this, though. It takes a pretty long time for most of us to come to terms with a whole new way of living.
I feel a lot further along this path than I was 10 months ago, and I hope that I will make even more progress in the future.
I could relate to much of what you said in your post about other people and their reactions to celiac. I think how people handle this becomes a metaphor in many ways for the rest of how they handle others' feelings and life in general.
For example, one very good friend of mine has not been so supportive or sensitive of my needs since I've been diagnosed (5 months ago)...her first reaction was: "Well, that won't be so bad!" which is, to the say the very least, unsympathetic. If I see her for morning coffee and she happens to buy a doughnut (and, like you, it's not as if I expect the whole world to stop eating or enjoying gluten) she'll remark on how she really wants it and how great it tastes, etc, specifically directed at me! She also continues to invite me and my kids over for pizza, or go out for pizza, no matter how many times I try to nicely remind her that it's fine for the kids, but I'd have to find something else I'd be able to eat...
In the beginning, this really hurt my feelings, because she is a friend for many years and spends a great deal of time with me and my family, so I guess I expected more consideration and concern. However, I started realizing that this kind of reaction is a reflection of how capable, or incapable, someone is of empathizing with others and having compassion for their needs. Some people are limited in that area, and I tried to accept her limitations and recognize she can be a good friend in other ways. This may be the case with your friend. As far as that guy who laughed? Some people are just dimwits, pure and simple.
Anyway, I've tried hard not to dwell on people who are not that supportive of what I'm going through. I feel it's an interesting, though slightly sad, insight into someone's character if a person seems unable or unwilling to put herself in my shoes and think about my feelings. I've tried to appreciate all the people who've come through for me -- from my husband and children, to my best friend, to even casual acquaintances who often display a kindness that really touches me. I also apapreciate this message board a lot.
I think a lot of this is slow going, and related to the general lack of awareness of celiac in this country. I don't know where you live, but because I live in NYC, you do tend to find more people who have dietary restrictions and many people here don't miss a beat when you tell them you need to be gluten-free (although they still need to be educated in restaurants, believe me!). So I guess I'm lucky in that regard. As far as explanations go, I, too, find it tedious sometimes and tend to just say: "I'm gluten-intolerant" (or, if they don't know what that is, I'll say I can't digest anything made with wheat, barley, rye) and leave it at that. If someone's curious, I'll go into it more...and you'd be surprised how many times in 5 months I've tripped over another person with celiac! Another clue that it's not all that rare.
I hope you have a lot of support among other family members and friends, and sounds like your boyfriend is supportive also (although naturally it's hard for people not going through to totally understand why certain things would upset you). As far as the unsympathizers go...maybe one day they will have to face a challenge in their own lives that will teach them to have more compassion for others.
Some people may have heard the short segment on National Public Radio's Morning Edition news program this morning (Wed. July 21) but for those who didn't, you can listen to the audio on the NPR website through this link:
I know some people will be disappointed that there was not more info and I would've loved more detail and a more in-depth look at how this disease affects people, but because NPR has a big audience I am grateful at least that the doctor interviewed did manage to relay some important information to the general public and I hope it does help raise the level of awareness.
I thought your two contrasting stories were very interesting, and very familiar. Thanks for sharing them. I think the depth of people's sensitivities to others' dietary needs have a lot to do with both the kind of people they are, deep down, and also their own experiences (for example, it's probably no coincidence that your friend who has an allergy of her own is sensitive to what you & your daughter can and can't eat).
I have to admit that prior to my own diagnosis, while I was considerate of my father-in-law's stringent low-fat requirements for his heart disease, I regularly brought desserts to my in-laws filled with nuts despite one sister-in-law being allergic to them. Even though I don't see her all that often, I should've remembered. So I try not to hold it against others too much, but as you said, when it's people who know you really well and spend a lot of time with you, you do kind of expect a little bit of heightened awareness.
It reminds me of very good friends of ours, who continually invite me and my kids to join them for pizza they are ordering in (at least probably 10 times since I've been diagnosed!) and when I say, well that's fine for the kids but I'll have to find something else since I can't have pizza, they always say -- oh, right, we forgot. On the other hand, I have a close friend who invites us over often for completely gluten-free meals prepared from scratch, and she goes to a great deal of trouble to make them really good and really safe for me.
My condition has made me try to be more attuned to what other people are dealing with in their own lives, and to try and understand them whenever I can, so maybe that's the silver lining. In the meantime, we all just have to appreciate kindness wherever we find it...
I was looking for a place to mention this and since Kinnikinnick has come up, here's where I'll put it. I've found all their products consistently good in the 4 months since I've been trying them out (I know some people find their bread - bagel - bun products a little sweet, which they are, but they still taste good). But I know a lot of people are discouraged about not having good cakes anymore, especially for children's birthdays, and it's very difficult to make a decent gluten-free cake from scratch.
I ordered Kinnikinnick's chocolate cake mix and it was excellent. It baked up like a souffle, light and fluffy, and I served it to company with fresh whipped cream (just whip up some heavy cream & a little sugar, or not, in a bowl with an electric mixer) and strawberries. It was delicious -- like a grownup and better-tasting version of a Devil Dog! Especially good for gluten-free kids who might miss that. I also think it would be good served with whipped cream and raspberry jam. Anyway, I'll be ordering this mix a lot and thought people might want to know it's worth trying.
I'm glad someone already gave out the info on the Benedictine nuns' very low gluten (can't quite say gluten free) hosts since I haven't read these posts in a while. About the freezer question: the directions that came with my supply specifically mentioned keeping them in the freezer to preserve longevity. I think the reason is they are made without preservatives, and eventually they will probably get moldy, not stale.
The system of keeping them in my own freezer at home and bringing one each week to church (in the pyx) is working out fine. If, for whatever reason, a pastor insists on keeping the supply at the church, you could suggest keeping them in the rectory freezer.
Although these hosts do, in fact, contain 0.01 percent of wheat, they were apparently checked out by a celiac expert (doctor) at the Univ. of Maryland Research Center, if I'm not mistaken, and pronounced safe for use by people with celiac disease. Whether that's a good enough guarantee for everyone is a personal decision. My doctor agrees that an infinitesimal amount of wheat ingested occasionally is not enough to either damage the intestine or to increase risk of cancer; he also pointed out that it is virtually impossible to live one's life completely free of contamination as particles of wheat & other forbidden grains are absolutely everywhere and every person -- with and without celiac -- unknowingly ingests tiny amounts on a regular basis. These occasional exposures, as long as a person is careful with big contamination issues (toaster crumbs, stirring wheat pasta and then rice pasta with the same spoon, etc.) as well as not intentionally eating gluten from time to time, should not harm your body.
I'm sure that some people feel that even the 0.01 percent in the hosts are too much for them to contemplate eating on a regular basis and I understand that. Also, I've read that there are Catholic priests out there who regard the adherence to strict canon law on the wheat-only wafers as patently ridiculous and will break the law to accommodate people with celiac by giving them rice hosts. For myself, I had no interest in attempting to change parishes and the Benedictine hosts were an acceptable solution for me. I wish everyone luck in dealing with yet another of these difficult issues that those of us with celiac disease must figure out.
Although I do have to cook a lot (I have children), there are many times I need to make a quick gluten-free meal for myself and it's not always easy. Here's a couple of things that have helped me. If you have a good health food store or Whole Foods you can probably get these brands. Health Valley makes a pretty good canned chili (vegetarian and gluten-free) that you can heat up and serve over rice or pasta; a pretty complete meal with a salad. Walnut Acres makes very good natural soups like lentil, etc. (check the labels, not all are gluten-free).
Here's a quick meal that even people who can't cook should be able to handle. You'll need corn tortillas (most supermarkets have them in the dairy case), a can of refried beans (again, check the label, but Bearitos and Walnut Acres both have gluten-free varieties), and grated cheddar or Monterey Jack cheese. Heat the corn tortillas briefly (about 30 seconds each side) in a non-stick skillet. Take them off the heat, spread them with the refried beans and top with the cheese. You can also add cooked chicken, steak, or pork, as well as jalapeno peppers or other vegetables. Top with another tortilla and heat in the pan until the cheese melts. Serve with salsa (again, many gluten-free brands, including Muir Glen) or hot sauce. This is very simple and quick, and even people who don't have to be gluten-free enjoy them, so they're good for company.
This whole thing is a learning curve;you'll find it will get easier as you go along. And don't just depend on your good-natured girlfriend! Cooking is like anything else you've had to try in your life that you didn't know how to do at first -- you can learn, and you can get good at it. Good thing you're a Yankee fan...if you were a Mets fan don't know if I could help. (Just kidding.) Good luck...
Hi Beer Lovers (former and current),
As I understand it, the process of making beer, which is by fermentation, is what makes it not gluten-free. The process of making other alcohol, whether it be whisky, vodka, bourbon and mostly made from gluten-containing grains, is by distillation, which is for all intents and purposes, gluten-free. That's because most experts on celiac are now coming to agree that the process of distillation does not allow any molecules of gluten into the finished product. They are simply too big. The Canada celiac associations have had all liquors on their safe list for some time now and I hear the US will soon follow suit. This is what I've found in my research. I can understand why some people want to be especially safe, but for those people with celiac who've had some hard alcohol with no ill effects, it does seem to be pretty risk-free.
I'd still be wary of any beer, though, since the fermented barley (what gives beer its distinctive flavor) actually sits in the beer until the liquid is strained, cleaned, pasteurized (or whatever they do to make it sanitary) and bottled.
I, too, was very fond of all kinds of ales and microbrewery-type beer (can't say I could ever miss Budweiser or Heinekin!) and it was very, very hard to give that up, along with pizza and bagels. But I've been drinking the Ramapo Valley Honey Lager (I"m very fortunate in that there's a gourmet beer store in my neighborhood that carries it) and have really grown accustomed to the slightly sweeter flavor and enjoy having one a few times a week, as I'm not a big wine drinker.
And don't forget about a Margarita which, if made correctly (real tequila and not that junky mix) have no gluten history and should be completely gluten-free. Not the same as a nice cold beer, but in the summer is a pretty good treat.
I've tried Kinnikinnick's hamburger buns and they are really surprisingly good, as are their bagels, believe it or not, and I live in New York. The texture and taste are not the same as the real thing, of course, but they are tasty and give at least the illusion of reality. Let's face it, when you crave a burger, putting one on corn tortillas just isn't the same. At least for me.
I keep their bread, bagels, and buns in the freezer and just toast them lightly before using. By the way, their pre-made pizza crusts, though a little weird looking, are also decent with good sauce, cheese, and toppings.
I am very fond of this company; just about every single thing they make is a keeper. Even their cinnamon sugar doughnuts...
I can definitely relate to that feeling of sitting out during Communion and feeling punished. It really bothered me a lot more than I ever would've expected and I hadn't been able to receive communion since I was diagnosed. Anyway, I found the information about the Benedictine nuns making the hosts that are so low-gluten that they are safe for people with celiac, and yet still fulfill the requirements of the church. My pastor ordered them for me and yesterday I received communion for the first time in months.
It was a little confusing as I'm supposed to keep the hosts in the freezer and bring one to church in a pyx that comes with the supply. It's kept on the altar during mass. I went up to receive communion last on the line so the priest would be able to go get my host, which was the difficult part, as the ushers kept trying to get me to go ahead of them, putting me in the position of trying to explain during communion why I absolutely had to go last! I think they thought I was crazy...but I'm sure these kinks will be worked out. It felt very good to be part of the Eucharist again.
Anyway, I wanted to say if you'd like to give it a try I'm happy to give you the information on where to order the hosts so you can let your parish know. Since I know the nuns have worked closely with experts on celiac in developing these hosts I trust that they're ok, so you may want to consider it. I do know there are Catholic churches here and there that are willing to use a rice host, but most of them still follow the rule on viable matter for the Eucharist and I wasn't interested in changing parishes. Good luck.
Hi: The gluten-free Outback menu is just the regular menu but with "gluten-free" noted next to items that are ok for people with gluten intolerance. To be honest, I don't understand why Outback can't just give out the same menu to everyone and have the gluten-free notation on everyone's menu, because I think it would raise public awareness and spread the word more (for example, many people who eat there may have friends or relatives with celiac and once they know Outback does this, it would bring in more customers -- seems to be common sense...). I just had my first meal there and it was very good, but I have to say I did have a reaction last night and wondered if others have, as well -- and I did not have the brownie (grilled shrimp and the rack of lamb, w/o sauce). I'd love to go back because it was enjoyable for all of us and a relief not to have to figure out the menu on my own, but if I don't feel well afterwards it's obviously not going to be worth it. I've only been gluten-free a few months and didn't think I was that sensitive but now I'm wondering if some cross-contamination in the kitchen would be enough to make me feel ill.
I asked the waitress for the gluten-free menu, and then when she started to take my order, she said: "No gluten. So that means you're diabetic, huh?" (But then she knew enough to say "no croutons on your salad, right?") So my feeling is that maybe they're not all that careful in the kitchen, and the wait staff is probably not educated about gluten intolerance. In that case, just offering the menu is not enough. Even though I certainly appreciate the attempt, and it was so great to go out for Mother's Day and have a good meal I didn't cook myself!.
I'm not sure if this is the correct place to post this, but didn't seem appropriate in the "baking & cooking section." I subscribe to a celiac list-serv and received info last night that Bette Hagman, the gluten-free gourmet author, has been hospitalized due to a stroke. Some of you may already have heard this but I thought others might want to know as well. Below is the info I was given in case anyone wants to send their good wishes for a fast recovery.
"It is with deepest sorrow we let you know that Bette Hagman, (The Gluten-Free Gourmet) has suffered a stroke and is recuperating in a local hospital. Her daughter will be coming to Seattle to be with her mother. Please keep Bette and her family in your prayers and thoughts.
All communication for Bette and her family should be sent in care of GIG. As we are given more information, we will keep you informed."
Emails for Bette: email@example.com
Letters/Cards: Bette Hagman
15110 - 10th Ave SW, Ste A
Seattle WA 98166-1820
Cynthia Kupper, RD, celiac disease
Gluten Intolerance Group
I found contact information online for a Benedictine order of nuns in Missouri who make a very low-gluten host (it's something like 0.01 percent gluten). I passed the info along to my pastor, who's being accommodating, and he's going to order some for me (we haven't quite worked out the details of how I'll be receiving communion yet).
Unfortunately, although Protestant churches will usually allow a rice-based host, the Catholic Church requires some portion of wheat to still remain in the host. For some people with celiac, this will still be unacceptable. I've decided to go with it since I don't appear to have a severe case of celiac disease and don't react severely (although I've definitely known when I've accidentally had gluten since being on the diet). I'm going to try receiving communion occasionally using these hosts and see what happens, but I know that isn't an option for everyone.
For me, it's been very difficult -- much more so than I would have guessed -- abstaining from receiving communion in the two months since I was diagnosed. On Easter I decided to drink some wine, but even that's a little risky since a few people always seem to dip their host in the cup (in our diocese, you are not supposed to do that). Anyway, I can let people know what happens with these hosts when I get hold of them.
But, remember that not getting sick if you ingest gluten (even something as small as a Communion wafer) is no guarantee. As you probably know, many people with celiac don't suffer any obvious symptoms and their bodies are still being damaged by gluten, so be careful.