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Date:
Mon, 8 Jul 1996 21:30:34 GMT
Subject:
From:
Kemp Randolph <[log in to unmask]>
Parts/Attachments:
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<<Disclaimer: Verify this information before applying it to your situation.>>
 
In response to both responses on this question,   I'll offer my own
experience to date apparently as a celiac.  It's now clear to me that lack
of return to normal for the intestinal walls can be  a very subtle issue.
It may even need a very celiac aware gastroenterologist because of the
other ways that the intestine can get damaged, either with or without
celiac disease going on at the same time.
 
My own diagnosis for myself right now is that I do have celiac disease but
may have a food allergy and or low grade infection that's keeping  some
celiac like damage in the intestine, now 2+ years after diagnosis.
 
The evidence for that may not convince you, but it bears on this question.
My brother was dxed 10 years ago without biopsy when an "expert" was called
in after he'd gone from 135 poiunds to 100 pounds and the doctors involved
threw up their hands. Likely he saw the classic (now obsolete?),  celiac
belly and said celiac. He recovered on a GF diet.  His first ever biopsy
just recently showed his intestines normal though he has two ulcers of
uncertain character deep in. Antibody tests taken then as well, for the
first time were negative. My bother was eating Kellog's Corn Flakes up to
about 2 years ago, a no no on a GF diet of the usual uncertainty how bad
that would be (3 grams of protein/ bowl as I recall, most from corn but
some from impurities in carbohydrate "malt" made from corn and barley). I
told my gastroenterologist t;hat my bother was celiac as soon as he said
malabsorption.
 
In any case, I was diagnosed by biopsy by my gastroenterologist's partner
without antibody tests and recovered on the diet.  I still produce a lot of
gas despite drinking dietician recommended amounts of water. (I eat a lot
of fresh produce, but I shouldn't have to drink more to keep gas in check.)
When biopsed 2 years later, gastroenterologist said yes, I did have celiac
disease, though he had to look hard for the damage this time (obvious the
first time he said). Antibody tests since diagnosis have been negative
except for an expected IgG 15 months after going GF. I was tested for IgA
deficiency (because I've never had a postive IgA test) and found to be
normal on this. So I'm not fully recovered after 2 years and GF. All
nutritional blood work is normal --calcium has been stable, though less
than 100%, of course, due to the undxed phase.
 
While it's possible I had an infection at the time of dx that took care of
itself. I lean to celiac given the family history. According to Marsh's
book page 155, 4 of the 5 stages of celiac intestinal lesion can be
produced by food allergy. How many gastroenterologists can look for this?
Should  I insult my gastroenterologist by asking for a second opinion?
 
I've tested myself for allegy to milk protein and found no reduction in gas
output. Food allergy testing looks like a black hole, frankly, with
charlatans and suspect testing all over the place.
 
This is long, but hopefully of general use.
 
                                              Kemp Randolph
                                              Long Island

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