<<Disclaimer: Verify this information before applying it to your situation.>> To date, I have received 91 responses to my poll on fanaticism in the celiac community (I did not include those that have been posted to the list). There is no way I can effectively summarize every point made in these posts but I will try to hit the high points. There were 49 responses from people that felt fanaticism was a distinct problem, 26 who thought that the health risks justified extraordinary caution, and 16 who seemed split down the middle. Some people were offended by my use of the terms "fanatic" and "paranoid". Please don't be. I'm afraid tact is not one of my virtues. The terms mostly reflect the way I often feel about my own state of mind. Happily, I received little hate mail; I've had worse from posts I though were far less inflammatory. Some of you were worried about me cheating on the diet. Please don't be. I am following a diet which is probably stricter than that which is recommended in every country but the US and will continue to do so. In reading through all of these posts, there were several things that became clear but which are hard to summarize from short quotations. Many of the people who posted seem completely unaware of the relative risks of different foods. They tended to put a piece of french bread in the same category as a teaspoon of vanilla extract. If there is one thing the US celiac organizations could do better, it would be to help celiacs understand these relative risks. Maybe they could come up with catagories: 1) Things that are absolute no no's (bread, pasta, HVP, etc.) 2) Things that are controversial because they have measureable gluten levels that are below the Codex limits. 3) Things that are controversial because they might be cross contaminated 4) Thing that are controversial because they are made from a gluten containing grain but have no measurable remaining gluten. This kind of list would help a lot of people. I found it interesting that most of the people who thought that hypervigilence was justified had been very ill prior to diagnosis and many of them still experience hyper-sensitive reactions. It's easy to understand how that kind of experience would tend to make you super careful. It would be stupid for me to advocate that anyone eat anything that makes them sick. Still, it is incorrect to assume that just because a food makes one celiac ill, that food harms all celiacs. Because this post is so long, I will put my summary first so that it is more likely to be read. My questions were intended to address long term health effects and were not aimed at immediate gluten reactions. As I stated in my original post "Now that I am feeling well, my concern is about how carefully I need to monitor my diet to insure that I do not suffer any long term health problems like lymphoma." Based on the responses to this poll, there are many celiacs who feel the same way. We want some clear guidelines from the medical community and the celiac societies that will help us to assess the real risks of eating different foods. We want to take every reasonable precaution to safe guard our health with our constantly worrying that some tiny gluten slip will kill us ten years down the road. It helps me to put numbers on things. If you ingest 10 mg/day of gluten, you have eliminated 99.98% of the gluten in a typical diet. If you eat a tablespoon of distilled vinegar a day, you are getting at most 0.000001% of the gluten in a typical diet. The extra effort it takes to eliminate that tiny fraction of a percent of gluten from our diets is enormous. Assuming that we have no symptoms of maladsorption and that we are feeling well, is it worth the effort it takes to eliminate that last molecule of gluten in our diets? While it is impossible to prove that such low levels of gluten cause no harm, no scientific study, of which I am aware, has found any long term health risk associate with ingestion of trace amounts of gluten. It's great that we have specialty food companies like KinnickKinnick who are willing to manufacture 100% gluten free foods. But research into every ingredient, preventing cross contamination, detailed labeling which are required to meet that standard cost companies a lot of money. That's why gluten free foods costs so much. Considering this, how can we get the FDA and large food companies to cooperate with us if we are pushing a standard that is scientifically untenable? Here are some selected sections from some of the letters Kinnikinnick Foods Inc. : " There will be probably no general answer to this, as all celiacs and/orgluten intolerant people are totally individualos in their reactions to gluten. I guess the answer would be to do exactly what you are doing on a personal level. To determine what you except for your own standards. If you feel fine to eat certain foods and only go by symptoms,that is fair. You would have a hard time however to justify the same measures on your celiac friend. Although it is true that there are higher levels of risk foods and lower ones like flavours, it is also true that a lot of celiacs get sick from very low levels like flavours. As a manufacturer we can only go by zero tolerance in manufacturing and processing glutenfree foods, regardless of the reaction differences of customers. This will provide safe foods without being fanatical about it. If after that you decide for yourself to take chances can only be an individual decision." "As a physician (My specialty is public health.) and recently diagnosed celiac, I agree with you that this is the case. . . . IMHO, CSA/USA is the primary cause of this. They have many items on their "forbidden" lists (like buckwheat and guar gum) that do not contain gluten, but that "some" celiacs have problems with. I'm not sure how they decide what goes on the lists, but it just makes life a lot harder for all of us. (At least they describe the vinegar controversy fairly well in their literature.) I just wish they would be more scientifically rigorous before they add items to their lists. . . . Celiacs in other countries seem to do just fine on less restrictive diets, leading one to believe that the US groups are overly cautious. (I personally wouldn't recommend eating items containing wheat starch, which is permitted in some European countries.)" "I have recently stopped my membership with CSA in part because of the subject that you wrote. I don't believe that it's necessary to go to the extreme limit that they propose. This diet can be hard enough. To go to the extent that they say you should go is too much for me. While I cannot deny that there are those who do react to distilled vinegars and they would be better off to avoid them, I cannot believe that their reaction is due to gluten. I don't think it is fair to say that distilled vinegar should be exempt from a gluten free diet. Nor do I agree with quinoa, millet and other grains being exempt from a gluten free diet." "I am a non-celiac mom w/a 5 yr. old celiac daughter. I constantly struggle to find a comfortable place between paranoia and complacency. By complacency, I mean, letting her have a product w/distilled vinegar, or when in a social situation letting her have I am something I'm reasonable sure is gf, but not 100% sure is gf" "thanks for speaking out, I was wondering if I was the only one who wondered about some of the folks out there. Sometimes I think maybe people are having an allergic reaction to something besides gluten when they have such an immediate, severe reaction." "Bravo!! You have expressed my thoughts far better than I could have. I have been on a gf diet for over 15 years. If I worried about inadvertent gluten ingestion as much as many of the people in this community, I would destroy my quality of life, if not my mental health." I also completely agree with your belief that the 0% tolerance policy that the US groups carry is what causes manufacturers to run scared. We live in a time of severe litigation, and if they are wrong who is to say that someone won't sue. I did notice heightened paranoia during the great vinegar discussion of last month (I think that was when it was). It is chemically (according to a couple of different chemists I have talked to) improbable that we are being affected by white vinegar, yet many of the posters kept claiming that they were affected and that the rest of us are wrong. I do think that for the most part we are shooting off our own feet as a group. Such heightened and encouraged paranoia are what make the various communities (medical, food, restaraunt) wary of us. Add to that fact, the problem that the major celiac groups (GIG, CSA, etc..) do not agree on what causes us problems and what doesn't. It is no wonder we don't get more help and recognition from the non celiac community. If we don't know, how can they help us?" "I can not help but agree with you that there seems to be a wide-spread paranoia in the celiac community. Partly due to this paranoia, I did not subscribe to this list for more than a year -- I just got too depressed and annoyed from reading messages about not being able to ingest vinegar, vodka and vanilla flavorings. I felt there was a border-line militant attitude about the zero tolerance for gluten." "I often tell friends that the particular foods I have had to give up aren't the hardest part of Celiac Disease. I can live without pizza or beer or (wheat) pasta. What wears me down is never being entirely sure, especially when I'm eating out, that what I'm eating isn't going to make me sick. Now, I realize that there's going to be some of that uncertainty from now until the time I depart this Earth, but it's especially hard to achieve even a reasonable level of comfort when most salient voices of the Celiac organizations, it seems, treat gluten as some kind of malevolent force, a single molecule of which is endowed with magical powers to injure at great distance. Worse still, there is a kind of Celiac Orthodoxy at work, whereby the "purest" attack the opinions of those who, say, think that the presence of wheat starch in charcoal briquettes or wall board is not worth fretting over." "Yes, as a mother of a 2-1/2 year old celiac child, I made myself a near wreck this past year by overseeing any threatening foods. I think as a parent, it's even harder when you're responsible for a child's welfare. At least celiac adults can choose to venture into gluten-risk areas ... and go by trial & error. But, when a child is in your care, you feel an obligation to bring no harm and may be overcautious. Yes, I wish there clearer guidelines about certain foods such as vanilla & vinegar. It would take the fear out of every bite that goes into my son's mouth. I would love some relief!" The information I dont have and would like to get is, how much gluten is there in foods. This is especally important for those food which only contain a little. A labeling standard which allows a statements like "Gluten in a single serving is less than 1mg" might make a lot of off-limit foods available. "From my perspective, in a country where Codex Alimentarius wheatstarch is allowed, this means that I am reluctant to post as freely to the List as I otherwise might - for example, I would not feel comfortable posting a recipe using a wheatstarch-based flour mix, despite the fact that I use this all the time. I know that other European coeliacs are also using it and yet I rarely see this mentioned even though this is meant to be an INTERNATIONAL list, so I feel there is a sort of self-imposed unwritten censorship at work. I would like to see a more truly international list where all coeliacs would feel comfortable and not have to apologize that their diet is less strict even though they are following the advice of the Coeliac Society in their own country." "Too many people are in denial or as we use to say have their heads in the sand and are just too lazy to take the extra time and effort to take care of themselves. Only half the members listed on the roles of my support group ever show up. Of those only half seem to think it necessary to pay much attention to their diet especially when eating out because they don't have severe symptoms. Many of these people were luckier than they know, they actually had doctors who knew something about CD and so were Dx before serious symptoms or damage had occurred. This is amazing to me since I struggled so long to find out what was wrong with me and have had so much damage done to my health. What is even worse is the attitude among family members of many celiacs. Personally I cannot get anyone in my family (even those with obvious symptoms) to even have a blood test (much less read literature) to determine the possibility of their having celiac disease. In my estimation, often, if a person hasn't suffered enough they can't appreciate the blessing of being able (to a great extent) to have a large role in determining the status of their health. The exception to this rule seems to be the majority of contributing members to this list! So I will reiterate, fanaticism NO, borderline indifference YES !" "Why do people like yourself try to impose your own thinking on others based on the fact that this or that does not bother you. The real question here is not why people who have real and often severe consequences to gluten ingestion react with what you think is paranoia, but rather why you are trying to gauge what happens to others based solely on your world of experience. Is it such a big leap of faith for you to believe that others may be suffering different and more severe consequences to gluten ingestion than you?" "As far as the difficulties that newly-diagnosed celiacs have in restructuring their life around a gluten free diet, well, those are the breaks, and they may as well get angry and then get over it. We have every right to expect manufacturing companies to comply with our demands if they want our money!!!" "I can see what you mean about being paranoid over a GF diet, but I'd rather be safe than sorry. There have been so many controversies on this list about amaranth, quinoa, buckwheat, vinegars, etc. Until some professional can tell me that these things are safe, I try as hard as possible to stick to the lists that I have of foods that are proven to be GF. I make just about everything myself and rarely eat out." "I'll vote for the fanaticism. Many people are totally uneducated about foods. If the shoot for 0 gluten, they'll still have enough accidents to reach any allowable amount. Last summer in a local restaurant, I asked the waitress if there was any wheat in a certain dish on the menu. She asked the cook. The reply from the cook was that she used all purpose flour and did not know if there was any wheat in it. If that cook were to be diagnosed with celiac disease, how would she handle her diet? I'm suprised at the what people do not know. It is sad. Until people are better educated they are safer being fanatics."