<<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