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Re: Message for Harry

Re: Message for Harry

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Posted by Angie E on August 15, 2000 at 22:48:15:

In Reply to: Re: Message for Harry posted by Harry on August 15, 2000 at 22:39:57:

:
: : Well, my blood test came back negative for Celiac. Now, I've done tons of research on this. Everything I've read states that the blood test is highly inconclusive and the only sure fire way to prove Celiac is through a small bowel biopsy. Am I right Harry, or am I totally losing my mind??? Or, do I have a dips#@* Dr (which I'm believing more and more everyday). I've cancelled the sigmoidoscopy. I told them I wanted a full colonoscopy with sedation or I would go to a dr. who would. He wouldn't do it. I told them I would rather give birth without pain relief again than go through anything that even resembles a lower GI. I was polite, however, I was firm. Insurance won't pay for it, but I think I"ll cough up the money and have a full colonoscopy. Why only do it halfway. I've had everything else checked thoroughly, why not this. What if I did the sig and they missed something like diverticulitis or something like they did you. I have sharp pains in my left side when I have a BM, so, I know something isn't quite right. Might not be able to find anything (as usual) but at least I'll know for sure. Harry, I value your opinion...just give it to me straight. Am I a nutcase? (Wait a minute, do I really want an answer to that???) I've had about all of this crap (pun intended) I can handle. My diarrhea stops when I go gluten free...no ifs, ands, or butts. I ate a piece of bread yesterday and have had diarrhea all morning. I'm just about ready to give up on this...
: : Angie E

: Hi Angie,
: You are right!!!
: I think it's sometimes best to change doctors--- it will give you a more objective opinion.I have done it several times.Some Doctors like it while others DO NOT and I have yet to find one that will be critical of another. But,they mostly do not like patients that have some knowledge of medicine and question what tests that are run and why.Some think you should accept their word w/o question.

: Six years ago my youngest son was admitted to the Hospital with an infection on his knee--the admitting MD ordered a very potent anibiotic be given in two shots in the butt and about 5 hours later a nurse came in to draw blood-4 vials and I objected because the blood test would not show anything after have that length of time--the tests were very expensive and of course were negative. When the Infection Specialist Doc came by later --I told him he was crazy as h___ for running such a test after that antibiotic had been given---needless to say he never came back to the room.We had to have him called to come and release Him 6 days later.I still see that DOC from time to time while visiting at the Hosp.and he still remembers me.But,he's not too friendly. My son had just changed jobs and did not yet have Hospital insurance and it took him 3 years to pay the bill.
: The Merck Manual says for Celiac,"Diagnosis is suspected on the basis of the symptoms and signs, enhanced by the laboratory and X-ray studies, and confirmed by biopsy showing a flat mucosa and (subsequent) clinical and histologic improvement on a gluten free diet. Jejunal biopsy can be performed even in small infants,-----"This was written in 15Th edition (1987), 16(1992) and the 17Th (1999) with the exact same wording --so it's not some recent discovery.I have read that blood test are being improved.

: I phoned the Celiac Foundation earlier today.They are sending me some info.The lady that I talked with said that for blood test to be positive and also for the biopsy to be positive ---there has to be Gluten in your system. I asked if she was a Doctor or had any medical training and she doesn't so ---she answers the phone---I really don't believe her because I have read several other places that a biopsy is used to make a definitive diagnosis and it doesnot say gluten has to be present.

: The only person that I have known that had what was thought to be Celiac --was kept on a gluten free diet for more than 10 years.She went to a Good GI doc and they found she had an enlarged colon ---took a section out and it solved her problems with gluten.This happened in her early teens and it was about 18 years ago.So,who knows.
: You may want to call the Celiac Foundation for some information -(818) 990-2354--in California.
: Take Care---Harry--the Fiber King™

: PS--You think I'll ever get to the point of writing a short message???

Harry:
I would not be the same if you wrote a short message. I would think you were mad at me! I've contacted the Celiac Foundation and gotten lots of information mailed to me. The handbook they sent me states the same thing, that most of the time, the blood tests are wrong and the only sure way is to do the biopsy. If the biopsy ends of being negative, I have no explanation whatsoever. If I don't eat bread, pasta, ice cream and everything else that has gluten, I'm fine! I figure if I'm knocked out for the colonoscopy, the could put another scope down my throat and do the small intestinal biopsy. We'll see what happens. I'm positive that gluten or whatever you are allergic to has to be in the blood stream for the antibodies to react and the blood tests for the antibodies. I've been gluten free for about 2 1/2 weeks (except for yesterday). So, I think I had lowered the antibodies at the time. Didn't matter though, he didn't want to hear what I had to say anyway!
Thanks for going through the trouble of calling the Celiac association. That is very sweet of you!
Angie E




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