<<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
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