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Hello to all. We've had a few developments here that I thought I'd share with
the list at large. Warning: It's a long message!
 
I mentioned a few weeks ago that our 5-year-old daughter (who has been on the GF
diet for more than a year now) had a severe reaction after doing really well in
our new home in California. The reaction continued for a very long time, and her
diarrhea worsened until basically undigested food seemed to be coming straight
out of her, for about a week. Over several days it gradually became more normal,
though definitely not what we would want to see.
 
We went to a highly recommended pediatric GI at Stanford children's hospital. He
ordered tons of tests and then made a follow-up appointment three weeks later. I
came away from that appointment very upset and have lots of questions. Please
bear with me if I don't present everything clearly.
 
1) What is a normal stool?
She usually has two BMs daily. They are a somewhat orange color.  The amount is
fairly large, and the consistency is sandy and feathery. They are just barely
formed when they come out. Upon the slightest motion--and always upon
flushing--they instantly disintegrate into a sandy cloud. We often have to flush
a few times to clear it all away. This has been going on for several weeks now.
This doctor was not concerned about this. He made me feel silly for being
concerned. He said that as long as there was any form at all to the BM, as long
as it was not liquid, it was fine. Does this sound right to you?
 
2) Could a wheat allergy make a child stop gaining weight and growing? Could an
allergy cause calcium malabsorption resulting in dental enamel defects?
 
3) Can you cause a severe reaction to gluten by being on a GF diet, even if you
do not have celiac disease? In other words, if a person without celiac disease
went on a GF diet for a few months, then ate, say, regular wheat-laden cookies,
would that cause diarrhea or other symptoms?
 
4) What is the medical significance of  "very long eyelashes"? Why would this be
noted on a chart?
 
5) How can we be confident of the right diagnosis?
Our daughter was considered to be an atypical presentation. She was three when
she was diagnosed, and she was not so ill that she needed to be hospitalized.
The only bloodwork ordered at the time were antigliadin and antireticulin tests.
The only abnormal result was the antigliadin IgG. Her biopsy was
inconclusive--abnormal, described as showing inflammation, with the bulb of the
duodenum being "smooth," but not awfully abnormal. On the path report is a
handwritten note saying simply "looks to me to be consistent with celiac
disease."
 
The biopsy was complicated by the fact that our regular pediatrician told us to
start an allergy elimination diet before we even saw a specialist; we didn't
know that she shouldn't have stopped eating wheat before the biopsy, which she
had a week after going mostly GF. The final diagnosis was based on a combination
of the bloodwork, the biopsy, our family history, our daughter's medical
history, and her dramatic response to the GF diet. (For example, after not
growing or gaining for two years, she gained three pounds in three weeks.)
 
Now this doctor seems to be scornful of the way everything was handled when she
was diagnosed and appears to question the diagnosis. He says that any number of
medical problems can clear up on a GF diet and that our daughter's response to
the diet is not a significant factor. He says that a week of being GF would not
have affected the biopsy, that it ought to have been more clearcut. Basically,
he left us feeling confused, treated us like bumbling overprotective parents who
had been dealing with bumbling country docs, and basically breezed away after
ordering us to get him the original biopsy slides and set up another appointment
in three months.
 
I don't mean to make this guy sound like a jerk. He's certainly arrogant, but he
is supposed to really know his stuff, and he has an excellent reputation among
his own colleagues. What are we to think about this? Although we were really
upset about the original diagnosis, we were so relieved to have found our
daughter's problem and have such a relatively simple way of helping her be
herself again. No daily needles, no fatal reactions, no drugs--just a GF diet.
(Not that that's easy!)
 
Now we've been thrown all out of balance again. We can see beyond a shadow of a
doubt that the GF diet has completely changed our daughter's health,
personality, and relationships. But what if we're wrong? What if there's some
other explanation? And are we going to have to go through this all over again
every time we see a new doctor?
 
If there were more research out there it would help. In the meantime, this list
is a lifesaver for us.
 
Thank you to anyone who made it through all of this message. I'll summarize
responses later for reposting.