<<Disclaimer: Verify this information before applying it to your situation.>> I originally posted my doubts that we would ever see an effective enzyme pill that would enable celiacs to eat whatever we want [lasagna] as long as we take a pill. Most people said they had been thinking along those same lines, but that a gluten/gliadin splitting enzyme pill might be useful when eating out to possibly make us safer from accidental ingestion. Others shared very interesting thoughts on genetic manipulation and possible drugs targeting the immune system. A few were angry that I posted my opinions & sent me personal criticisms. But one, Kelly, who disagreed with me, very courteously responded with information about related studies from Stanford. I didn't include Kelly's response with my summary because I felt it was too long, but encouraged her to post it to the group independently. Here are samplings representative of the responses I received. [My comments are in brackets.] --------------- I don't know as though I'd want to try it.... I think you've definitely got something there though on the possible profit!!! Let's hope more money comes in!! ~Diane ------------- Unless somebody could prove its complete effectiveness I would probably use it only in a social situation where I would still avoid obvious gluten but would be at least somewhat protected from the accidents and contamination. ... To me, the ideal would seem to be discovery of a process that somehow removes the trigger or poison from the wheat before we even ingest it. With genetics the way they are today, I would think this could be possible. Probably not much money in it though and how would you get everybody to use it in their products? ~Richard ------------ I had very similar thoughts. If even a little gluten can damage people, and knowing that an enzyme can't digest ALL the gluten in anything, then this pill just isn't going to work. Perhaps it does have application though when you go out to a restaurant - just as extra protection in case some gluten does sneak in - to reduce it as much as possible. The downside of this is then that people might get the wrong idea and might assume they can be careless. I would like to see the enzyme used in industry, to consume the gluten in foods - perhaps to digest gluten in rye before distilling off the alcohol, just to minimize contamination. In reality, I think that would be very expensive, and I think for the meantime at least, nothing is going to change. It makes me wonder what the celiac diet will be like in ten years! ~Ingrid. --------------- I must say that I think you are right. The very fast reacting people are probably allergic as well as intolerant (different reaction pathway for this than intolerance). As the Radiation Protection Adviser of a fair sized UK University with both a Medical School and a Vet School and with my own background as a research technician, I am more than somewhat suspicious of what I have so far seen (and I still haven't had time to go get our latest password - from the Med School Library - so I can read the actual paper). There are two possible scenarios which I always hold in mind: -That the researcher may claim more than the facts warrant -That the media may make unwarranted claims for the value of some research -These two are not even mutually exclusive. I'm more concerned because I feel that the gut reaction <sorry, but not very> of an old researcher is that there are several different types of coeliac. They may be differentially sensitive to differing gliadins (using "gliadins" in the broadest, most generic sense). We know that spelt lacks the alpha gliadin and that there are coeliacs who claim that it is safe to eat (it maybe for THEM). I would be unsurprised to find an eventual classification of 4 or even 6 types of CD. They might be sensitive to differing polypeptide chains, and we might therefore need more than one magic pill (if they work)....On the positive side, imagine being able to go to a party where they have TRIED to produce GF food, and not have to worry about the odd crumb of cross contamination (this is what my wife, the coeliac of our house, said she'd feel was a great advance, even if it could only do that and no more). ~David Walland ---------------- I seriously doubt there is any way to bind the enzyme to every single gliadin molecule to prevent reaction. I certainly won't be in front of the pack that gives this a go, as much as I would like to. Besides, I just had lasagna last night, with Tinkyada noodles...can't tell the difference anymore. But maybe this can lead to some sort of genetic replacement that would allow us to react like non-reactives. I didn't say non-celiacs, because now I am wondering if intestinal involvement is just a fraction of the problems of gluten ingestion. God, am I turning into one of those leaky gut/ wheat is poison nuts? Maybe so! ~Kit --------------- This is not related to that directly, but I just went out and bought a 12 pack of Michelob Ultra. Here's the story: Someone ... recently posted a message(link) that had a lot of g/f drinks on it. Smirnoff Ice was on it, and that is a cooler brewed with a barley malt. I confronted the company and they are aware of the protein in barley and said that it might affect some celiacs. It has a very high sugar content so that turned me off. (I'm a T-1 diabetic) ... I called the Budweiser company to urge them to make a g/f beer, and the rep told me that Michelob Ultra is made from rice, but barley is used in the brewing process and in fact is turned into amino acid during the brewing process. ...Here is my line of thinking. I will be 63 years old next month. I have been on a g/f diet over 6 years without cheating once. I am going to at least drink one bottle of it. My wife is on a low-carb diet and will help me out as it has only 2.6 gms of carbs.............so go ahead and blast me. ~Charles in SC [Go for it, Charles!!!] -------------- I don't believe you are correct about celiacs reacting to gluten contact anywhere in the GI tract. I have never heard that from any reputable medical source. People who react instantly to gluten are having allergic reactions, not celiac reactions. The two reactions are separate disorders and probably don't involve the same peptides as allergens (that would be pure coincidence) so the "glutaid" pill almost certainly wouldn't help those people. ... ....However, I agree with all your other comments. Gluten concentrations in food of more than a few hundred PPM have been shown to be harmful to celiacs. Using a thousand PPM as a round proven-harmful number translates into a requirement for the pill to be 99.9% effective within the hour or two that the gluten resides in the stomach before travelling on into the small intestine. I'm sceptical that that is achievable. ... ~Tom [Dr. Braly & Ron Hoggan describe a rectal challenge test for celiac disease in his book, "Dangerous Grains" that involves measuring the immune response after a gluten slurry is instilled rectally.] ------------- I have had similar thoughts. I am lactose intolerant ... I have found that taking enzymes to digest milk sugar has no effect. ... It might seem to work (i.e. reduce symptoms in less sensitive people) but I think the major league celiac docs will be very hesitant about this approach. It would take long term research to verify whether damage to the mucosal lining was occurring. ------------ Should be made more effort to force food and drugs processors not to mix that stuff everywhere, unless is necessarry. ~Kevin ------------ [This fresh perspective from Carol] I think gluten is a snap, compared to trying to go soy, dairy, corn and pork free, and actually envy those whose only problem is gluten. Dairy and the lack of cheese is the big one for me. I guess it is all in the perspective. Then on the bright side, I think about the Children of Israel, wandering around in the desert upset because they only had manna, or others who can't even get enough food for subsistence, and I thank God for all the fruits, veggies, meat, fish and breads and deserts I can have. I guess we are spoiled as Americans, but I am thankful for all the substitutions. ------------ I'm not a scientist or medical person but I, too, have doubts. And my intuition seldom fails me. Something doesn't ring true in this new research and you may have put your finger on it. All I know is that I won't be first in line for trials. -deb ------------ In one news article I saw Joseph Murray at Mayo quoted as saying essentially the same thing about the enzyme - that it would have to completely break down all of the gluten to be effective. Diane ----------- ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. *Support summarization of posts, reply to the SENDER not the Celiac List*