<<Disclaimer: Verify this information before applying it to your situation.>> Dear List Members. This is LONG, but worth while. If you don't have time to read it all, read the introduction and then Don's quote near the end. He wraps up the important issue in one sentence. Background: Bill Elkus, one of the LIST owners, sent a posting to the list in which he said, among other things, "The major celiac support groups can't get their acts together re: vinegar, alcohol,quinoa, teff, amaranth." When I wrote back to the list, I arbitrarily added buckwheat to his list. In that post I said, "Quinoa, buckwheat, and amaranth have been tested by food chemists and found to NOT contain the type of gluten/gliadin that causes celiac disease. Those seeds or fruits are from plants that are not biologically related to wheat, barley, rye (and maybe oats)." [Vinegar and alcohol became separate issues and I will send a summary of responses regarding them on another day, but here is a summary of the response from the list regarding quinoa, etc..] (No one wrote anything about teff.) From John, "I've gone out on the limb and tried "The Ultimate Meal" I did not try this product for so long because of the Quinoa in it. Well I found out that the reason it's a nono for some is because it is grown together with wheat. Therefore it get's contaminated. Well I travel alot and need something quick and Energizing so I kept coming back to this product. I finally called the company and they explained to me that (like the label reads) it is gluten free. I tried it and it works great...just what I needed. [John, I don't know what "The Ultimate Meal" is - fill us in. From Bill (a different Bill, not Elkus) wrote, "At any rate, I wanted to tell you why buckwheat remains on my own'don't eat' list . . . It remains there because it is often grown in fields that had wheat the previous year. This means that wheat grains from the previous year will also be growing in the field, so contamination is possible. Like you said before, I don't want to win that lottery. To which I replied: Re: buckwheat... if you buy whole kernel buckwheat and go over it the same way one must go over lentils, for instance - a handful at a time, picking out any non-buckwheat seeds - and then rinse, you eliminate the possible contamination. My husband has worked with a buckwheat company and this has worked for me. I don't presume to tell you what to do, but if you long for something new to eat, you might give it a try. Good when cooked in chicken or beef stock. However, remember to buy the whole buckwheat, not the kind that is cut into smaller pieces (sometimes called fine granulation, or comparable terms). From AST Preferred Customer, "I answered Bill's post but did not copy the list. My main concern is the "turf" wars that are occurring. I have learned over 20 years that if I think something bothers me-it does, no matter who says it is safe. Our diet is difficult enough. I know I improved after using only GF pickles. I think our key words should be cooperation and empathy. The multiple associations also complicate things, as do the various lists. I can uncerstand the reluctance of some of the manufacturers to definitely classify a product as GF. If you can get a huge court settlement for hot coffee you dump on yourself, you can bet they are smelling lawsuit and some are definitely vague. I even had a Taco Bell person tell me all of their items are GF- I wish. I wonder if maybe we could someday have just one national organization and the ones in existence could serve geographical areas. Maybe we can do something to help our situation-any ideas? Maybe we can do something to help our situation-any ideas? From Tracey "I'm just new here [he he, new enough to jump into the frying pan!] but it seems to me that the less contentious way out -- and maybe easier in the long haul -- is to not necessarily reach an agreement about oats or quinoa ... but to mandate that food companies stop the annoying "and other natural ingredients" practice ... that companies should be required to label precisely what goes into their products, period. I don't even see this as a celiac issue as I do a food allergy issue. A good friend of mine is highly allergic to onions -- anaphalatic [sp?] shock kind of allergy -- and she is forever finding onion bits in things, calling the company and having the company say "oh, that was the natural flavoring in our fine product" ... Back on the celiac issue though ... again, as a 2-month young newbie, I only know vaguely that some associations say yay to some things and others say nay. It seems like it would be eaiser in the long to require food companies to list every durn thing that goes into making their product, down to the microgram. that way, we can all make educated decisions w/out this sit-n-call-the-800# round robin game. From Mary, " I agree with you and Don. Facts are facts. I'm getting tired of people messing up my facts! Imagine what the food companies are going through! From Tami, "Sometimes I feel I am raising a hypochondriac (as well as building neuroses of my own). It has struck me recently that it is so easy to blame anything and everything on this disease. Every time my son has problems concentrating, "abnormal" behavior at school, or an upset stomach, my first thought is "celiac reaction." But we are *so* careful about his diet. Well, you know what? Every other kid in the world has bad days, bad moods, and catches viruses, and it's all perfectly normal. Sticking to a gluten-free diet and avoiding cross-contamination is nearly a full-time job. Why do we make it worse by suspecting and avoiding things that scientists say cannot possibly contain harmful gluten? Even when it feels like a celiac reaction, it is possible it's not. As so many know from personal experience, celiacs--like the rest of the population--can have other conditions. I don't have celiac disease, but am lactose intolerant. My best friend doesn't have celiac disease, but is allergic to barley. Every reaction in a celiac is not necessarily *caused* by CD. From Barb, " I cook most everything from scratch, but we still get occasional reactions, the small ones are usually waking up in the night with tears and crying out desperately. I appreciate the hard work our celiac organizations are doing. I agree we have to stick together for these most sensitive individuals. Otherwise we will be relegated to a life of fear. Who knows where the next trace of gluten may come from? I will be watching for more info on buckwheat, quinoa and amaranth. I rotate these grains daily, and I would love to be able to rotate my son's diet to have less corn and rice also. I don't have celiac, but I have certainly benefited from eliminating gluten from my own diet. Because he is so sensitive, we want proof that these grains are OK before we introduce them. From Bev, " I cannot help but think that sometimes it is worth it to ere on the side of caution. When my daughter was first diagnosed, we did try using those alternative grains and vinegar, but her reactions were so severe, that we decided to go the conservative route. I think that you can never be too careful when it comes to health issues, and if in the future, you decide to try to be more liberal, so be it. If that works for your situation, more power to you, but if, like in our case, it doesn't, we wouldn't know where to look for the gluten if we were not told that these items could potentially pose a problem. I respect the individuals decision to be in charge of their own health, but as a mother, it's my duty and responsibility to make sure my child is healthy. The information that these organizations provide is essential to helping us make the best possible decisions for our loved ones. From Connie, " I think and feel about this whole situation just as you and so many of us in regards to these other grains containing harmful glutens and that there are those that are simply have an allergic reaction. I afraid that so much os what you have stated will fall on deaf ears though. Some months ago I went through this with Diane Paley, East Coast Group, and if it is not written in her little OK list it is bad. Very narrow thinking in my opinion. I am not the type of person that just takes someones word for it I will check it out also. Well, those that don't believe that there is a possiblity of these other grains being OK are missing out on a lot. I'm extremely affected by the smallest amount of gluten but I've never had a reaction to quinoa, amarath, or buckwheat. I do not use distilled vinegar though. From Karen, "I take the position that maybe someone can scientifically verify that they do not have gluten in them, but I would certainly think that there must be a reason that the CSA says that they don't recommend them for people with CD. I do agree that it should be stated if they do not contain gluten, that it should be specified that they do not contain gluten but some people with CD may have problems with them. I with that someone would get this cleared up. I am super cautious and do not use canola oil or guar gum either, as it has been stated that they can have a laxative effect in some people with CD. I don't try anything controversial, as I am having enough problems with the things that are supposed to be GF. From Barb, "...then there are people like me who only will show a reaction to ingestion of gluten if it is continued for days and days. It took me until day 6 of a recent gluten challenge to develop any symptoms which were mild compared to many people as I only became nauseated and bloated. I never developed my rash as I didn't stay on the challenge long enough. Unfortunately,I can't depend on reactions to let me know if damage is being done so I am careful about everything. When I first went on the diet, I could depend on the rash returning within 1 to 2 days if I ingested gluten, but I've learned through my recent gluten challenge that this doesn't work any more. As a result I'm a lot more careful. It sounds like we need more research done on a lot of our foods as far as what really causes villi damage as much of the diet is based on first hand reactions and not scientific reactions. From Don, "I consider it an embarrassment to the worldwide celiac community that our largest celiac group thinks these grains (along with buckwheat) have gluten. They have no evidence to support their position, yet they refuse to budge." There you have it, folks - as of 9:13 AM EDT, on Saturday, April 11th. This is my first successful attempt to cut and paste and make a summary. For me it has been like learning to ride a bicycle, and creating this post has taken FOREVER. On the other hand, it has been gratifying to receive so many carefully considered answers. I realize it would have been nice to say, "From Barb in Indiana, etc... I'll do that next time. I did not ask for permission to include names, so I did not feel at liberty to include that information. For me, the final quote is the most important. Let's ask members of this LIST who belong to one or another of the five major celiac support groups in the USA to ask THEIR organizations for the reasons they have items on their lists of gluten containing foods, when those foods have been scientifically proven not to contain the kind of gluten/gliadin that causes celiac disease symptoms. Perhaps we can make some progress in having a unified approach to food lists. Sorry this is so long. Happy holiday to one and all. Gayle Kennedy, Ithaca, NY