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Abbreviated first message:
I cannot understand why any doctor would endanger the well being of a
child of seven to do a gluten challenge. What on earth was the reason? If
a gluten-free diet solves a problem is not that enough reason to stay
gluten-free? Imagine making this poor child sick for two months or more...
Isn't it time this LIST, as a group, began to question the wisdom of such
action and to become pro-active ourselves in showing celiacs that they can
question the wisdom of such a test and can, indeed, tell the doctor they
are unwilling for themselves or their children to undergo such a
gluten-challenge if the gluten-free diet is working successfully?
Most Americans seem to feel we have no right to say "No" to a doctor, but
doctors are human like the rest of us, and sometimes they follow a protocol
with very little thought.
There have been many responses: I'll try to send just the nub of each message.
*****
>Good for the sound off. It's past time to say no to a doctor, I won't do
>any more biospies even without a challenge
****
>This issue concerns me, as well, and due to my good health after eliminating
>gluten, I also, have never had a confirmed diagnosis by an MD. I believe I
>have proven what was wrong and that I have been blessed to figure it out
>before permanent damage was done. And I won't eat that stuff again and make
>myself possibly very ill. I agree with you very much. It also concerns me
>when people on this list get on their soapboxes and say that everyone should
>be biopsy diagnosed because it's the only way to know for sure...seems sort of
>like they're putting walls between us (who's been diagnosed by a doctor, and
>who's just being silly, diagnosing themselves...). I appreciate your message.
****
>I completely agree with you. It was 18 yrs before I was diagnosed with
>CD. I am on this diet 25 yrs. I was lucky that when I went to a NYC
>immunologist, she said if she were me, even with all my negative tests,
>she would never go off this diet if it solved my problems. I have an
>IgA deficiency and it gives off false negatives.
>
>When are thes MOTHERS going to learn that their children are not guinea
>pigs? Like you, I won't allow it. I guess this comes from age and
>experience.
****
>You're right of course. I often tell my doc I don't want to do things. He
>knows me well now and is pretty good about it.
>
>After doing all the reading about prostate exams, when he started putting
>on his rubber glove, I told him, "no" I did not want that. He wanted to
>know why. I told him I'd done the reading and half the docs thought that
>was not necessary. And in addition, I told him that what had kept me out of
>the penitentiary when I was young was that I didn't want large men doing to
>me what he was getting ready to do :) He thought that was funny, and he's
>never offered again.
****
> We too said no to a doctor. The look on his face was great!! It is
>a freeing experience. My son's experience with celiac has made me a better
>mom and a more assertive person.
****
>I couldn't agree more with every single word that you said! It is
>amazing to me how people will "offer up their bodies" for any kind of
>thing just because someone has MD after their name. I have said no so
>much that I don't even go to western medical doctors. They are all
>clueless. My homeopath/natureopath did more for me in a matter of months
>than all my years being misdiagnosed by western medicine. We wouldn't
>have a health crisis in this country if persons were really informed
>about eastern medicine...homeopathy, etc. You hit on a big nerve of
>mine as well. And don't even get me started on the FDA. My computer
>could destruct itself with just me righting a response on that agency.
>
>They deliberately keep other "cures" away from the public just to keep
>the pharmaceuticals in business. The FDA has lost a very big lawsuit,
>but you sure never read about it the paper or hear about on the news.
>
>Sorry I got carried away. Keep telling these folks, and maybe one day
>it will get through to them.
****
>I totally agree!
>
>I perhaps am on the opposite extreme as I have developed a
>severe distrust of doctors. I feel they don't understand
>the science... they are too quick to give a symptoms a name
>and think that is a diagnosis and then end up treating
>the symptoms and not seeking the cause!
>
>I have never had any of the "official" celiac tests. but
>the last time I accidentally had a serving of wheat I
>had all the symptoms I used to have as a child.
>
>Without wheat I am normal! It seems downright simple to me!
>
>I think perhaps doctors don't believe patients' descriptions
>of their symptoms? As a child I used to go to the doctor all the time
>for bone pain and locking joints but it never occurred to the
>doctor that this was because of poor dietary compliance in celiac
>disease (I was a rebellious and naughty child) even though he had been
>told that I had CD.
****
>I actually have a Pediatrician who after reviewing my childrens problems and
>symptoms after my diagnosis. Said the fact that the GF diet was working
>when nothing else did was enough for her. I feel very lucky.
****
>It is seldom that I agree with every word of a post to our list. Your post
>was an exception to that. You are correct and your attitudes toward doctors
>seems measured and reasonable to me. I don't instantly and blindly do
>everything my doctors want, either. They have been grossly wrongheaded on
>several occasions and admitted it to me later when the truth became evident.
>
>There are several reasons that doctor give for following the usual protocol
>when it comes to celiac disease. Some of their arguments make a little
>sense to me but I, personally, would never deliberately eat any gluten. I
>was ill for 63 years before I finally figured out by myself that I had
>celiac disease. Now that I feel wonderful every morning I am going to do
>what makes that possible--a completely gluten-free diet.
>
>Thanks for stating your position on this to the list. I, too, think it was
>time for that.
>
>To make a child suffer to satisfy the political purposes of a doctor is
>barbaric.
****
> I am in complete agreement! I have never been willing to do a gluten
>challenge just to get a biopsy either. After all, there's nothing doctors
>can do for you after it that you can't do for yourself before. Wasn't there
>a message on the list two or three years ago admitting that although doctors
>expect us to do gluten challenges and get biopsies, doctors with celiac
>disease don't do this to themselves? The other symptoms (and the relief
>that comes with a GF diet) are enough.
****
> Thank you so much for your letter to the list. I found out 4 weeks
>ago via a blood test that I tested positive for Celiac disease. I went
>ahead and started eating gluten free and am feeling so much better. I
>did eat gluten for two days during the third week because I knew the
>endoscopy was approaching. I felt awful. So I cancelled the endoscopy
>and went back to being gluten free. I have been feeling guilty about
>refusing the test. I was feeling particularly guilty today because today
>was the date of the endoscopy I had cancelled. Thank you for relieving
>my conscience. I am getting my skin tested for DH. I can do that while
>gluten-free, though no new places have appeared.
****
>take comfort in knowing that I refused to challenge my three-year-old.
>He has been diagnosed by me, his celiac mom, and has responded wonderfully
>to the gluten-free diet (within days his symptoms seemed to disappear.) His
>pediatrician does support my decision. I have shared our story with all of
>Vermont. I wasn't diagnosed for decades, but finally was two and a half
>years ago. I'm with you. I can't fathom the idea of giving my child gluten.
****
> I am glad I am not the only one. I refused a gluten challenge for
>myself and my son!
****
> Great advice. After a two-week gluten challenge prior to biopsy several
>years ago I became convinced that we need to listen to our bodies. The
>biopsy was negative, but I absolutely know without any doubt that gluten
>makes me sick. In retrospect, I knew that before the biopsy. Never again.
>
> It is always a good practice to question docs. If they are too thin
>skinned to deal with questions, even those that question their judgement,
>find another. Right now I am seeing a gastro, who I like so far, for
>stomach pain. He suggested doing an endoscopy and ultrasound, which seem
>reasonable, but said that if the ultrasound was negative he would want to
>do a DESIDA scan (radiotracer) to check out my gall bladder. I looked up
>gall bladder disease and found that is characterized by right side pain,
>nausea and vomiting. My pain is on the left side with no nausea or
>vomiting. He's going to have to do some good explaining before I agree to
>the test.
****
Let's hope that the research that Jeff Black is doing at the University of
Utah will be successful in finding a celiac diagnostic tool that will not
make it necessary to do any more gluten challenges in the future.
Meanwhile, let's try to find ways to protect the children and those who
have severe reactions from doing a gluten challenge. Gayle Kennedy
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