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Hello List,
Thank you so much, everyone, who responded to the dilema we are having with
my daughter's diet. I apologize for not being more timely in posting this
summary. As a small excuse, I have been having my own health problems and
have been given a diagnosis of possible MS. When it rains it pours!
It is heartening to know there are people out there who care enough to guide
us along. I was a little unclear in how we came around to suspecting
gluten. In my husband's defense (and mine) we did not realize there might
be a problem with gluten. The ironic thing is that if she has this disease
she could have been gluten free since she was 6 months old. As soon as she
went on cereal she reacted but the gastro decided she didn't have it. So I
never gave it another thought. Wish I had known about this list then, I
would have known to at least push for a blood test.
Anyway, we were chasing corn and it's many names as the possible cause of
her diarrhea. We accidently put her on a gluten free diet because she
wouldn't eat any of the wheat type products we had purchased that were corn
free. We were only clued into the possible gluten problem when we gave her
Malted Barley as a sub for her beloved grits and the diarrhea returned. I
immediately said to the spouse, "Hey, wait a minute, what was that thing the
pediatrician thought it was when she was a baby ...?
As best I can, here is a summary of the responses:
1) Yes, many celiacs do not have an obvious physical reaction to processed
gluten products, but do have a reaction (including diarrhea) to the more
high fiber gluten containing foods.
2) Even though one might not be having an obvious reaction, if you are a
true celiac and not "just" gluten intolerant or have a wheat allergy you are
still damaging your intestines.
3) Several recommended that we get her tested right away and on a gf diet
as soon as possible. We are pursuing that and at least one blood test has
come back positive.
3) Many recommended that we do not remove gluten from her diet before she
undergoes any tests since that may produce a false negative. We did put her
back on gluten, lots of it.
4) There were a couple of technical responses (lengthy) that were quite
informative and helped me understand what might actually me going on in her
body. If you would like a copy I will be happy to send them to you.
5) Two people said that they either also had a problem with corn or knew of
other celiacs that had problems with corn. Bummer!
6) Several people mentioned that after going totally gluten free they could
then handle some of the foods that they previously could not, i.e. fruit.
She's hoping she will be able to eat chocolate someday!
7) One rather repulsive technical comment was that in the US some fruits
are dipped in vegetable broth. Yuck! Who would've thought!
8) Several people commented that it took awhile for their or their child's
body to completely adjust and settle down, as much as a year or more.
9) It was recommended to find a celiac support group and get a doctor's
name from them. We did get a doctor's name (from someone on the list) but
have decided to at least for now stay with the guy who saw her when she was
a baby for continuity. Her appointment is June 2nd. If he is unwilling to
go any further, he is history.
10) Several people pointed out that celiac manifests itself differently in
different people. Some are constipated, some have diarrhea, some have other
sypmtoms and some have none. One lady was diagnosed when they were looking
for ulcers and was surprised to find she had celiac.
11) My favorite comment "If it looks like a duck ..."
Many thanks again,
Robin in Dallas
P.S. I have unsubscribed and resubscribed as [log in to unmask]
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