<<Disclaimer: Verify this information before applying it to your situation.>> The reaction to my message about the possible dangers of a gluten challenge speak for themselves. The original letter was sent tot the LIST on Jan. 29. How do we get this information to our doctors? Gayle Kennedy **** >I too agree with you completely, and think a gluten challenge is probably >likely to do irreversible damage to the small intestine at least. > >When my doctor (Driscoll in Seattle) tested me for more than half a day and >told me from these tests I had less than a 2 percent chance of being >celiac, but that I had lactose and grain intolerances, he told me I'd have >go back on gluten for three months if I wanted a biopsy. I asked him if I >really needed one, and he replied: Only if you'd like to help me out >financially. Good doc, eh. -vance **** > I'm fairly convinced that food is both medicine and poison. I'll be >*&^%$#@ if I'll take rat poison just to find out if I have a reaction to it. >Thanks for your thoughtful and provocative message. Those adjectives seem >to apply to you a lot these days. Obviously, you must be gluten-free! :^) >Love, Pamela **** > Thank you so much for this message. My daughter is not MD diagnosed but >does have major intestinal problems on gluten, and has responded so >profoundly to the diet that we simply adhere to it at all costs. She is >13, just starting her trek into womanhood, and feels as well and normal as >any girl of her age would, thanks to being GF. I have tried to explain my >position to others on the list before, only to be scolded for not having >her "properly" diagnosed. We didn't know when we began the diet that being >GF means not being able to have that all important biopsy. But now, she is >very clear about the fact that she does not want to go through >re-introduction of this poison for a doctor to tell her what she already >knows. To her it's just not worth it. I can't say I blame her. > Thanks for bringing up these kinds of tough subjects for us all to >grapple with. There is alot left to learn about Celiac Disease, isn't >there! >Betsy Algis >[log in to unmask] >[log in to unmask] **** >Hi There-I also question the gluten challenge!. I was daignosed celiac as a >child. That is enough for me and I thank god for that. I would never do a >gluten challenge because I get even more sensitive as I clean my system out >and the accidental challenges are too etched in my memory. The problem is >there is so little knowledge and real facts about this condition- and >exactly what condition are we even talking about. - an allergic? >intolerance- sensitivities, inability to digest? what exactly is it? I >thought I knew before getting on this list serve at Xmas, but know I am >even more confused. Is it even the gluten? are you in Ithaca? I am 60 mi >south of Ithaca and go there often- do you have a support group in ithac? >There is one in Binghamton which I am trying to get to next month. I have a >pharmacy background and like more concrete scientific answers - I am also a >massage therapist so cover both angles of approach and know that things are >not always so concrete in nature. Take Care Donna **** >I was relieved to read your post. My son is biopsy-diagnosed and doing well in >his 9th year gf. I keep learning, and as I learn more about where gluten >creeps in, he does better. > >Last year I began having clear symptoms. When I realized it might be gluten >rather than simply stress, I went gf. It took two weeks to get the blood work >and 8 weeks to get the biopsy because of my work schedule. But I felt quite >unable to cope, with panic attacks, sleep disturbance, irrational behavior, >memory problems, and other fun experiences, not to mention the purely >physical, so the minute I realized it might be gluten, I was suddenly gf. >Dramatic change right away, within days. > >Negative biopsy, slightly positive blood work. > >The doc says I don't have celiac and he thinks I'm a bit nutty for not eating >gluten. >I know what makes me mad as a hatter and I'm not touching it. It doesn't hurt >me one bit if my medical record doesn't show celiac. Who cares! > >Knowing as I do now that villi can heal within a few weeks, I would have saved >myself the expense and trouble of the biopsy. > >Now I can't help but wonder whether all those years of depression, sleep >problems, trouble concentrating, and extreme irritability were just gluten >talking. It also makes me wonder whether bulimia and anorexia nervosa might >not sometimes be caused by gluten intolerance in one form or another. > >Thanks for your post, and for including the note from the doctor! > >Judith >Mountain View CA **** >Amen, amen, and amen! >Ellen **** >I am getting the impression a the old standard of biopsy to confirm, then >biopsy after going gf, and finally biopsy after gluten challenge is falling to >the wayside. The very-up-to-speed-on-celiac disease pediatric GI who is >treating our seriously-ill celiac child was so certain of diagnosis after the >initial biopsy that she sees no reason to "put him through a gluten challenge. >After all, he is trying to grow". She came to this conclusion after >researching the necessity of the challenge. I love her and feel relieved to >have my child under her informed and wathful care. How I wish more celiacs >could have that type of relationship with their docs. No signature **** Re the term opioid reaction in the brain: >I hadn't heard that term. It's good to know it has been described, at least. >My oldest son, 13, tested negative for celiac but reacts to gluten with a >puffy face and wild fits of irrational anger. Also alot of other less dramatic >but very unpleasant social symptoms. I can tell by his eyes when he's had >gluten. >I appreciate your asking, and I don't mind if you use mty post, all or part, >or sumamrized. Please leave my name off, though. It is so helpful to learn of >other people's experiences and observations, but I feel wary of anything >public as I am divorced with kids whose father is litigious. >Best, >Judith **** [Gayle K speaking here:] My original letter included a quote from Dr. Keifer, in response to my stated unwillingness to do a gluten challenge in order to have a biopsy: >"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. Take care. > >Dr Gary" >[log in to unmask] Then Sylvia responded: **** >Wouldn't it be wonderful to have a physician like Dr. G. Keifer? Thanks for >sharing. I would stay GF if I were you. I would like to meet you sometime, >maybe in Boston in the year 2000. ( I don't have the info yet but I did make a >memo to send it to you!) >Sylvia Bower from Ohio **** > I was reading your post on the gluten challenge and I should froward >it to every doctor I have ever seen! because no one seems to see the >connection between gluten and depression/mental instability. I got sick a >few weeks ago and told my therapist I was depressed and she said well >celiac is not deadly. I said excuse me I can be for some it may take a >long time to die but also I feel so depressed I want to die and have >tried to act it out a few times. they are very much related. I don't know >reallyif the challenge is necessary in most cases but maybe if people >knew it was just the gluten making them act that way and that it would go >away they might overcome it. but who knows. I wish the blood test was >infallible! -Aimee, the chocolate lover :-) **** >I also agree with you, I think this is wrong.... don't do a gluten >challenge, why risk your life? >Just one example and the doctors say they don't know why it happened.... >just before I was diagnosed with Celiac they thought I was suffering from >gall bladder problems, because of the great deal of pain I was in. I had an >upper GI done before, in fact just a year before, and had no problems. This >time, the Lord had to be with me, I don't know how I ever reached home. I >scared everyone enough that the Nurses on duty over the weekend were calling >me twice a day. I should have let them send an ambulance for me, but of >course had no idea as to what was going on, so thought it would just pass. >It did, but it took the whole weekend. > >I had the GI test early in the morning. I drank that delightful drink while >they x-rayed me. I felt a little funny. Had been feeling so bad for so >long, just thought I was over tired and sick. I left the hospital after the >test. I felt week and dizzy. I was driving.... I live in the country and >it was all back roads home fortunately. Anyway, I had started carrying a >small garbage bag in the car in case I would get sick.... never had, but >came close, only this day I did. The pain was severe, I started to sweat, >it was in March so it was cold here in New Hampshire. I sweat through my >clothes and my coat, straight through!! Then I just pulled my car off the >road in time and got the bag, I started vomiting and found it hard to stop. >Once I had I drove as fast as I dared to get home. I could barely get out >of my car and walk in the house.... started to vomit again, when I had >finished I started with diarrhea. By the time I had stopped I couldn't get >to my feet. I crawled to the phone and called my doctors office. My head >was pounding and I couldn't stand any light, they told me to lay where I was >until I felt a little better.... they stayed on the phone with me for a >while, then I just felt tired. They said they would check back with me in >an hour. They did, I could then walk somewhat but couldn't keep anything >down though I was very thirsty, I had already figured I was completely >dehydrated. My son came over and stayed with me for a while. I finally >fell asleep and when I woke up I was able to keep a very small amount of >liquid down. Should I have gone to the hospital? I know now that I should >have. I was in danger although at that time I didn't realize it. Whatever >was in that drink, which the doctors felt there was nothing that should have >caused that reaction, even once they found out I was Celiac. I will not >take that test again! I was sick for the whole weekend. I couldn't go to >work on the following Monday as I was still unsteady. I feel because I was >Celiac, and I was very ill, losing 40 pounds that month, chronic stomach >pain, and iron deficiency anemia, that this test was all it took for my >already damaged intestines. > >For anyone to go on a gluten challenge could be life threatening. You never >know how something is going to effect you. If you know you could get sick, >why do this and take the chance you may lose your blood pressure. Mine was >60 over 54.... This was just a test to find out what was wrong, a gluten >challenge is permanently trying to see if you will suffer, not a wise thing >to do. Lori from New Hampshire **** That about wraps it up, as of Ground Hog Day 1999. There must be many other stories out there, on both sides of the issue. After reading the mail, I am more than ever convinced that I will NOT put myself on a gluten challenge in order to have a test. Gayle K