<<Disclaimer: Verify this information before applying it to your situation.>> Last month I posted a couple of messages indicating that millet is gluten-free, and warning that we should not assume that all reactions are because of gluten. Most of the replies were in agreement. Some had additional points to offer, or additional questions: --==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==-- From Bev in Milwaukee: Millet may be g.f. along w/ many other minor seeds, etc. When you purchase it....make sure it [is] not from a source that is cross- contaminated w/ gluten contantains grains. Do you trust that the restaurant personnel is knowledgeable enough about celiac....to research the source of the millet? I personally even have doubts that a restaurant's rice flour may be g.f....all ground in the same place on the same equipment....At least cornstarch has been coming in it's own box from the same people for decades. Interesting observation--When we have our celiac meetings, we want recipes for all the refreshments people bring. Brand names of ingredients are even better. Everyone of us wants to make sure that fellow celiacs won't "poison us." Yet when we go out, we blindly accept stuff that people who know nothing about celiac tell us about their ingredients. Doesn't make any sense... --==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==-- From Ginny: This list has grown so much and a lot of new people have been giving well intended advise but do not have the years experience of researching celiac. I feel it is time to put back the disclaimer that we had on months ago that warned everyone about taking advise from someone on the list. They should double check the info. I recently asked someone for responses to a question they posted on the list. There was no summary so the person emailed me with all the responses. One person told her that their doctor and the merck manual said that some celiacs can be cured. I emailed the sender to explain that I did not feel this info was correct and got blasted. They were extremely angry that I went against their doctor's word. [Let me make it clear that I agree with Ginny: Celiac disease cannot be cured at this time, nor does it seem likely anytime soon. Anyone, including doctors, who says otherwise is "misinformed". I know of no doctors who are up-to-date on celiac disease who state that celiac disease can be cured.--Jim Lyles] --==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==-- From David: The whole thing got put in perspective recently when we welcomed a foreign coeliac into our home while on holiday in the UK. This person would not eat GF bread made with CA purified wheat starch but WOULD go and cheat with ordinary bread! What does one say or do. --==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==-- From Louise: I tried quinoa once and broke out in something that looked like heat rash ALL OVER my body (swarms of tiny/small red spots or bumps). It took WEEKS to fade. Haven't tried an alternative grain since. I use rice bread and corn tortilla. But I NEVER have gastric symptoms. I was diagnosed at 48 by biopsy because nothing else was found to be causing the "problems." I answered her as follows: With that kind of reaction, I think it is wise to avoid quinoa--but it is not a typical celiac reaction; it is more like a allergy reaction. You have the "joy" of being both celiac AND having other food sensitivities. But I would not cross out all alternative grains just because quinoa gave you trouble. Jowar (sorghum) comes highly recommended, and many people also like buckwheat for variety. It would be a shame to never try these if they don't cause you problems. --==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==-- Renee' asked me: Jim--Just was wondering when I read that in your post that only the gliadin in the forbidden grains would damage the villi. Won't lactose in milk also damage the villi if you are lactose intolerant? My reply: No, not at all. Lactose intolerance is caused by not producing enough lactase, an enzyme needed to break the lactose into simpler sugars. The undigested lactose remains in the intestines, fermenting and causing gas. The gas is what causes the pain and discomfort. The villi are not affected, because the immune system never gets involved. Lactose intolerance may cause the same symptoms as gluten, but what is going on inside the intestine is very different. The following comes from a talk by Dr. Sheila Crowe, as excerpted in the Dec. 1997 issue of _The Sprue-nik Press_: If you are lactose intolerant, consuming milk products does NOT cause villi damage; it just makes you feel uncomfortable. We've covered lactose intolerance in our newsletter in the past. To see an index of related articles, go to: http://www.enabling.org/ia/celiac/sn/spinmed.html and scroll down to the "Lactose Intolerance" section. You'll find links to six past articles concerning this topic. --==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==-- George asked me: Has any research or work been done on whether enzymes are available to better digest gluten proteins? Much like the lactaid enzyme is used to aid lactase intolerance in drinking milk. My reply: I don't know if any research along those lines is being done. But I'd say it is unlikely to be helpful. With lactose intolerance, the symptoms are painful but NOT damaging to the villi. Therefore, it becomes feasible to supplement with the lactase enzyme, because it doesn't really matter if a little bit of the lactose fails to get broken down. But with gluten proteins the celiac's immune system gets involved, thus causing villi damage. Therefore, even if there were some sort of enzyme to break gluten proteins down, it is doubtful that ALL the proteins would be affected before the immune system mounted its response. By then, the damage would be done. --==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==--==#==-- ------- Jim Lyles -------- ----- [log in to unmask] ------ -- Holly, Michigan, USA --