<<Disclaimer: Verify this information before applying it to your situation.>> On June 24, I wrote a note to the list, questioning the wisdom of gluten challenge biopsies. At that time the list owners wrote asking me to collate the responses. They are edited because some are repetetive and others are from people who ask not to be quoted directly and/or not named. Sorry this will be a bit long. The first message read, in part: >I have adamantly refused biopsy again and again. The hard thing about it >is that the doctors are annoyed when a patient refuses to "cooperate." >Never mind that the doctors are refusing to cooperate with us.... Who's >paying, anyhow -and who's sick??? > >Would a doctor knowingly eat something that might make him/her suicidal? >Or would a doctor knowingly eat something that might threaten a job loss >because of irratic behavior? With symptoms very related to schizophrenia >in some patients, isn't it more than a little dangerous to do a gluten >challenge for those persons. If that IS the case, what are the >alternative ways to determine whether or not one is indeed celiac, and is >it important to know that if one knows that gluten containing foods cause >the mental symptoms? > > What if a gluten induced change becomes irreversible? What if brain >damage is the long term result? Do the medical professionals really know >the answers to these questions? > >Gayle K Here are the edited replies: ============== After reading several do's and don'ts I have decided to share a don't. We have a daughter who was diagnosed as diabetic at 16 months. (1987) In 1989 she showed the classic sympotoms of Celiac Disease however we didn't know it at the time and our diabetic clinic doctor didn't recognize it. In 1990 we move and began seeing another doctor. The very 1st visit he diagnosed CD. We did the stool test, (positive) then followed up some blood work (positive). We switch to a GF diet and she bacame a new kid at age 5. HOWEVER, we kept hearing that we have to have a biopsy! My wife and I were both reluctant right up until time for the procedure. We were told 'routine' 'routine'. So routine that you can come in and watch the procedure in the room. Great! They apply codine, promethazine, then demeral (I'll leave it to the doctors to explain why each) and then RESPIRATORY ARREST CODE BLUE! 3 Minutes later the hospital swat team revived her. All of this while I held her and watched her turn blue. By they way I was stupid enough to let them proceed with the procedure. I was asked to help pin her down to insert the instruments down her throat. They were scared to administer any more drugs. A lot of people told us about the 1 in a million after this. Do you or would you want to be that 1 in a million? Anger turned to thanks, turned to tears after that event. We even had the doctor talk about doing this again later to determine tolerance. Fat chance! We now have a daughter who is diabetic, celiac and has a medic alert bracelet that warns about demeral, promethazine and codine, and a hospital that covers the incident up. Necessary definative test? ============== I agree that it would be foolhardy for you or me to try a gluten challenge. What makes my life worthwhile now is my relationships with family and friends. No one remembers what a depressed, irritable and ineffectual (plus sick) person I was. I like it that way and don't want to threaten any of what I have built in the last 24 years. No gluten challenge for me. ============== I also suffer gruesome schizophrenia-like symptoms and depression if I eat any gluten so I can empathize with you on that. I made a success out of my life even with these handicaps but, now that I am symptom-free, it amazes me that I was able to do that. I asked my doctor if she knew doctors who had celiac disease and, by chance, she did. I asked here if they had had a biopsy and was 'floored' when she told me none of them had. I asked here if she thought they should do a 'challenge' and have a biopsy and she said she thought they should. When I asked her why, she said she thought they should do the same thing they insist their patients do. As itis, these celiac-inflicted doctors are simply avoiding gluten and lactose while ordering biopsies for their patients. I also asked her if these doctors told their celiac patients that they had the disease and she turned her eyes down and answered, "No," in a soft voice. What does this tell us? >> Is it possible that a gluten induced change would become irreversible? >> What if brain damage is the long term result? Do the medical >> professionals really know the answers to these questions? Medical professions don't know the answers to these questions. They don't because, even though they've had since the Fourth Century to find answers, they have done substantially nothing. They have done nothing because there would never really be any substantial amount of money for them in such research. The only money from celiac disease now is from tests and biopsies, isn't it? Doctors often own large blocks of stock in drug companies and they also often have financial interests in drug stores and drug distribution companies. Since no drugs are usually involved in the treatment of celiac disease and lactose intolerance, they simply aren't that interested and are not willing to devote any substantial amount of time to research. What we have to do is to help each other to stay on our diets, give support to people who have disabilities caused by the failure of doctors to suggest gluten-free diets and quit allowing doctors to stress us with their continuing foolishsness. ============== Gayle, I share your concern. I have not had the definitive testing championed by so many people on the list. My worst problems are severe, uncontrollable diarrhea, extreme fatigue, depression, and fuzzy brain. When I am on gluten, I am literally immobile. I can't work, can't think, and don't care! I'm really afrait to disturb what is now a perfect (or near perfect) world with good mental and physical health! I wish I had been diagnosed early on, but I wasn't and I'm not going to be pressured into it. I take it as other's "well intentioned advice" and have made up my own mind that as long as I am maintaining a fairly high-pressured career, I simply can't aford to go retro -- even if it means a diagnosis. To each, their own decision. ============== [This reply came from an MD.--Gayle] Good for you. I am a Dr. but a good one who happens to agree with you 100%. I am trying to substantiate these biopsy tests to determine if in fact they are important to help the patient or important to line the pockets of the doctors. I'm with you. ============== I did a tiny gluten challange in anticipation of a blood and biopsy. I lasted one day. The 2nd day I was so wierd and hurt so bad that the doctor said "forget it" and did the blood test believing that we would get a positive result if I were Celiac. Same with the doc that did the biopsy, he assumed that I was gluten challenged all along and that nobody could really follow the gluten free diet completely. Apparently I was doing a pretty good job if I am Celiac and I do enough of a good job to function and feel pretty good all of the time. But with a wheat challenge, or barley (as in the case of beer) I suffer for a long time after ingestion (5-7days). It is such a drag cause I have 5 children who are all okay and I buy the groceries and bake the cakes for birthdays, and I work in the grocery store pharmacy and have to walk down the soap aisle so as not to look at wheat laden foods and start a craving thing. I bring all my food with me to work cause the only alternative is canned fish or fruit or milk products and lately dairy doesn't seem to do me much good either. Since I don't have a celiac diagnosis, I get no sympathy from any MD I've ever seen. They all think I'm crazy or something and want me on drugs. I did hear a naturapath MD talking about leaky gut and hormones and diet. It was really very interesting. Since then I've been supplementing Evening Primrose Oil caps - 4 a day along with my Super Blue-Green Algae tablets and trying to see if I can't get some good out of it. My respiratory allergies have certainly improved, but I still can't eat gluten! Exercise really helps me feel better too. I have really become disgusted with the medical profession and am in somewhat of a dilemma being a pharmacist, I don't know how long I can continue, but I will continue in the meantime to research natural alternatives and chronic diseases and try to heal myself and maintain my good health achieved so far. I agree with you that it is crazy for a doctor to suggest a gluten challange for a diagnosis that would result in the same treatment. I got a response from a doctor on another list that was simply " you are doing a good job managing your health with diet " that was all he said. Bravo! Sometimes the answers are simple. ============== Just a note to congratulate you on your posting! You've asked some excellent questions. Hopefully there will come a day when the experts come to the realization that no one goes and stays on a gluten-free diet unless it signifcantly affects their well-being OR that the consequences of going off a g/f diet to those who do benefit immensely from the diet is of more importance than satisfying the experts' scientific curiosity. ============== Gayle, I agree with you. But I seem to me more fortunate in my collection of doctors than you, because my internist, gastroenterologist, and gynecologist all support my decision to not attempt a gluten challenge. I think our situation is different than that of a young child, who will have to be trained in the realities of a life-long gluten free diet. For me, a gluten accident takes a long time to recover from, and I believe it causes lasting harm. Sometimes we need to take charge of our own health, even if our ideas may go against the prevailing medical opinion. ============== [This note is from Joan Hoover, a world renoun expert on patient care in diabetes. I had sent her my original message.--Gayle] From: [log in to unmask] Date: Fri, 27 Jun 1997 20:19:51 -0400 (EDT) Dear Gayle, I can hardly believe my eyes. Are you saying that people who react badly to gluten are GIVEN gluten to see if they are telling the truth? Archaic!!! Why am I surprised? If you have all the symptoms of diabetes, you are given huge amounts of sugar syrup over several hours to see just how badly your body handles it......and it's not necessary because a finger-stick blood glucose test will tell you where your sugar is at any given time. All it tells you is not to drink huge amounts of sugar syrup....just in case you are so inclined. Is EMA screening the load of gluten you were talking about? Have you considered just how many first degree relatives IDDM patients might have? $$$$$$ I'm really getting to the point where I can't just continue to nibble around the edges at this stuff. I'll either have to shout from the house tops that the Emperor Has No Clothes, Or I'll have to get out of the business. What do YOU think? ============== From: [log in to unmask] Date: Sat, 28 Jun 1997 21:56:03 -0400 (EDT) There has been some discussion of a rectal gluten challenge. Perhaps that would ber an alternative if you consider it safe. ============== [Douglas Jeeves sent a long list of studies about celiac disease testing that has been done between 1977 and 1991. I'll include the first and the last. If you have interest in knowing more, contact me, or contact him. I don't feel I can fill the whole list with all this info.--Gayle] Date: Fri, 4 Jul 1997 20:35:17 -0400 (EDT) From: "DOUGLAS A. JEEVES" <[log in to unmask]> ------------------------------------ Celiac Disease and Monoamine Metabolism 78065469 DN Challacombe, Dawkins PD, Baker P, Increased tissue concentrations of 5-hydroxytryptamine in the duodenal mucosa of patients with coeliac disease, Gut 18: 11, 882-6, Nov 1977 Tissue concentrations of 5-HT have been measured in the duodenal mucosa of adults and children with coeliac disease and were found to be significantly higher than those from a control group. This finding may be associated with hyperactivity or hyperplasia of enterochromaffin (EC) cells in the duodenum of patients with coeliac disease and could also be directly related to described abnormalities of 5-HT metabolism in this disease. Delete....... 92342686 ZE Kozlowska, [Evaluation of mental status of children with malabsorption syndrome after long-term treatment with gluten-free diet (preliminary report)], (Ocena stanu psychicznego dzieci z zespolem zlego wchlaniania po wieloletnim stosowaniu diety bezglutenowej (doniesienie wstepne).), Psychiatr Pol 25: 2, 130-4, Mar-Apr 1991 The author examined 41 children, suffering from celiac disease with psychiatric methods and EEG. The children, aged 7-17 y., were many years on gluten-free diets. Various psychiatric symptoms were found in 48.8%, and EEG abnormalities in 70.7%. Only 9 children (21.9%) were free from any psychiatric disorders and EEG abnormalities. ============== Then there was today's message from Claire Pappas, saying that a gluten-free diet had made her well, then her doctor did a test after six months on a gluten-free diet and told her she was not a celiac.... That's what inspired me to get this information out to all of you. There was one other heart-wrenching story that I will try to paraphrase, as the author requested that it not be forwarded. It seems that many years ago a doctor was trying to get a villi sample with the usual proceedure and managed after two unsuccessful tries that snagged her intestines, the knife from the Crosbie capsule went too far into the intestine and broke off leaving it in her gut. The doctor then requested that she search for it and return the equipment to his office when it finally was passed out of her body, as it was an expensive piece of equipment and he wanted it back. At the same time the doctor told her to go on a gluten-free diet so that no more damage would be done to her intestinal lining. As a child this person had been gluten and lactose intolerant. Symptoms of anemia, etc. Now she still has doctors trying to talk her into taking a gluten challenge and biopsy. I have no further editorial comment. Let the facts speak for themselves. ============== I hope this little exercise has been helpful for a few of you. I do wish that the CELIAC Pro list would learn of more of these stories, and would seriously consider the psychological aspect of gluten challenge, as well as the physical risks involved in challenge and biopsy. Gayle Kennedy