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Thanks to everyone who responded to my query! I heard from 15 listers. Only
one who also had normal follow up biopsy with symptoms persisting. However,
I found an old summary with others in same boat - maybe it's less common to
do a follow up biopsy now? Everyone who responded had been through same
thing with symptoms persisting after going GF.
One lister wondered if I might want to get a 2nd opinion as it's possible
the biopsy might be read differently by another doctor. Suggestions to check
for parasites,SIBO,etc. One lister wondered if hormones might be playing a
part here & recommended the book "Mastering Leptins" by Byron Richards.
Most of the other replies focussed on other food intolerances. Hoping that's
not my son's problem as he's already had to cut out a long list of other
f
oods [he's also been completely off processed foods since last June]. Whole
foods diet highly recommended, which we've been doing. Also recommendation
to eat raw foods only.
Six replies recommended digestive enzymes. Dr. Green at Columbia had
prescribed them for one lister, based solely on symptoms & food diary [no
bloodwork] so that's good enough for me! Kefir and probiotics were also
strongly recommended.Also recommended were papaya, l-glutamine, Betaine
HCl,veratrum alb., and nutritional supplements. Also suggestions that
naturopaths seem better equipped than most GI docs or regular MDs to help
with this.One person found a doc in Chinese medicine helpful.
Thanks again to everyone & I'll be implementing several of the
recommendations. On the plus side, checked my son's weight & he's put on 2
1/2 lbs in the last 3 weeks - yay!! Not feeling any better though so wish us
luck:-) Aggi-Rose

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *