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Date:
Sun, 12 Mar 2000 08:27:07 -0500
Subject:
From:
Peter Caron <[log in to unmask]>
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<<Disclaimer: Verify this information before applying it to your situation.>>

As a summary of the original post, I asked for info. for my child who is
three and a half PDD-Autistic, CD child. We had troubles with
mediccations to treat reflux esophagitus, and wanted to know what drugs
have been used successfully.  Then I asked about diets and that we may
switch to Elaine Gottschall's "Breaking Th Vicious cycle" book diet also
referred to as the specific simple carbo. diet.

Thank you all, this is an experience. Many, many replies, about forty in
all.  I'm going to summarize in categories.

Medications for esophagitus:

Tagamet       1
Axid          2
Pepto Bismol  1
Gaviscon      1
Aciphex       2
No Meds.!     3
PREVACID      6    Veratrum ALB 30c

My child had bad reactions to Pepcid AC (extreme hyperness), Zantac 75
(disrupted sleep patterns going to sleep, and maintaining sleep), and
Prilosec ( The sleep effect, an increase in repetitive behaviors, such
as biting people and a loss of word retrieval for spontaneous sleep.)
Prilosec has lactose as an ingredient and my child is on a dairy
(casein)free diet as well as gluten free( also anti-fungal and
anti-yeast).

One person cautions the use of Propulsid that effects the heart and it
may stop.

Pediatric GI's that deal with PDD-autistic children recommended:

Dr. Kocashis    Children's Hospital Pittsburgh
Dr. Fasano      U. of Maryland

One recommendation to find a good Homeopath.  Another was to give my
child piano lessons, this we have planned to do anyway, and if it does
have an added benefit then AMEN!!

Websites:

Healthfirst.com  (MSNBC SITE)
Clan Thompson drug database
greatplainslaboratory.com
Delphi.com
ephca.com/epd.html

I will try to find the database, great plains lab, we already use, and
yes the celiac forum at Dlphi.com I can't wait to find some time to get
on.  The last website is about EPD, this is something I'll be leary of,
but have yet researched it at all.  I still appreciate the suggestion.

Diet websites:

PaleoFood.com
Feingold.org
ozemail.com.au/~sdengate/
ozemail.com.au/~sdengate/contents.html

Autism and gluten websites:

onelist.com
osiris.sunderland.ac.uk/autism/treat.html/

I called Mylanta and it is true that they do not gaurantee their product
as being gluten free.  They get some ingredients from an outside source
and my question is: shouldn't that supplier have to disclose what is in
their ingredients!

The very best advice we received was about keeping mim more upright than
usual.  A common sense approach to the problem, yet one I didn't think
about.  He is three and many people roughhouse with him, this has
already made a beg difference in his comfort.

Allergy tests:

This is a sensitive area for me.  He has had the back scratch test- No
allergies detected.  He has had 6 viles of blood taken for all the Ig_
tests-No allergies detected.  He cannot have gluten grains, soy, or
casein (dairy products).  he does not have any allergies to these, but
loses spontaneous speech within days of having any of these products.

We have been told of the high rate of false negatives in allergy testing
of children.  We believe that the biopsies that were taken (4), were not
enough to detect CD in this child.  We believe that he has a leaky gut,
and the effects he has are to the brain from food not properly digested.
 There is a connection of autism from celiac disease.  Once the gut
heals he'll be avle to have a variety of foods for the first time, but
Never any gluten products.

Many people swear to NOT doing a gluten challenge.  In hindsight I
agree.  The doctor took 4 biopsies and only checked  4 of the pancreatic
enzymes.  There are 13 of which 11 are usually tested for.

As for EPD, my son doesn't have an allergy, he is not sensitive, he is
Intolerant of Gluten products, and until I can do further research we
are not subjecting him to a wheat serum that goes directly into the
blood stream.  If I sound harsher than I need to be, please don't take
this personally, but his experiences with allergist have been poor, they
are ignorant of CD, autism and intolerances or sensitivities.  They seem
to be stuck in their tunnel vision of practicing medicine.

Thank you for all the responses, including the ones of warm wishes.  I
appreciate the amount of time people gave to our concerns.

One last thing, Children's mylanta has corn starch in it, and I would
feel pretty comfortable saying that it is probably gluten free.  My son
did not lose his speech while taking this, however the adult version
original mylanta I'm sorry to say probably has one of these three
ingredients in it Gluten, soy and or dairy.  My son's speech within
three days of taking one teaspoon 3x daily, is losing his speech once
again.  The children's mylanta will constipate the child, just so you'll
know.

Thank you all, and God Bless,

Christine

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