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Summary Refractory ??
Thanks to all who sent good wishes and kindly answered my questions about
possible refractory etc. Sorry, I had to cut some messages really short to fit.
#1 tests a) Multiple biopsies of SI, for signs of clonal lymphoma cells. Special
stains of tissue may be necessary. (older males with late dx tend to have
higher incidence of refractory CD and lymphoma) b) Gliadin antibody levels
test, c) A trial of pancreatic enzymes safe and reasonable. Treatments. a)
Steroids .b) Other medications in experimental trials -. Immune type
therapies. c) Pancreatic enzyme supplementation reported beneficial in some
celiac patients with refractory symptoms even if insufficiency is not proven. d)
best probiotic is VSL#3. e) Probiotic yeast Saccharomyces boulardii is helpful
for many gut problems. (For altered gut bacteria (dysbiosis) and yeast
overgrowth
#1 sent following PDF files which I can forward if requested.
a) Article Etiology of Nonresponsive Celiac Disease ; Results of Systematic
Approach
b) blood publication dated 02/23/2007 highlighting complications of celiac
disease.
c) article regarding VSL#3 probiotic preparation.
#2
..additional food allergies ( leaky gut.) Apparently 50% of celiacs
allergic/reactive to milk proteins. Food allergy blood testing might be worth a
look.
#3
.75yr old, not dx til age 69 found probiotics and/or enzymes an immense
help. iFlora probiotics from Sedona Labs & Jarrow Enzymes Plus. occasionly
use Jarrow chocolate powdered whey protein for energy.
#4
.refractory sprue, and has refused steroids and auto immune drugs,
#5
. suggested that I telephone her.
# 6
.apple cider vinegar and honey - If tolerated, no acid coming up, a little
daily.
# 7
.probiotic called Culturelle,
#8
..Check mercury poisoning
#9
.. if steroids dont work Remicade infusions are a possibility.
.#10
.eliminate dairy products for a while, if working can tell within 2 weeks or
so.
#11
go grain free (except for some rice) & Dairy free??? It helps a lot.
#12
.Suggested there is no treatment for refractory celiac disease. Diet
won't help.
#13
.doctor dx refractory celiac, prescribed steroids-no improvement, more
tests discovered pancreatic enzyme deficiency. Now much better.
#14
.Dr. Clarks information. www.drclark.com
#15
.Took over 5 years to recover. detox protocol with supplements and
germicidals for SIBO and candida, lymphatic overload due to a back-up
of "bug" wastes, toxins. Now total gf house; use only fresh organic, non-
processed foods (truly gf); toiletries & household items gf; avoid air-borne
glutens (during harvests, in homes, grocers with bakeries attached, fish & pet
food, etc.) Found alternative medicine docs to help. My MDs disinterested in
my health and in what I did to recover! I had serotonin in my urine.
hemotologist dxed it but didn't have a clue. May have been caused by
metabolic acidosis as a result of the bacterial and fungi overgrowth. To
improve it - alkalized (negative hydrogen ion) water for over a year. Look for
gluten contamination. Remember, gut bugs cause problems & must be fixed;
killing them might not totally take care of the problem. Even after correct
protocol and treatments, took over 2 years.
#16
.Was on steroids which messed up potassium. Been on TPN for 12.5 yrs.
#17
Has refractory celiac, diagnosed in 2000 and didn't respond fully to a
Gluten Free diet. Doctor did all he could, incl steroids. sent me to Mayo Clinic
in Rodchester, Minnesota to see Dr. Joseph Murray celiac specialist, tests then
put on Endocort. so much better! I continue to take small dose to keep my
celiac in control. Unlike other steroids, Endocort targets the gut, so fewer
side affects.
#18.. Immediately start him on a probiotic..u will begin to see results in 2
weeks...take him off milk and anything with sugar. I would find a great
integrative functional medical doctor...this person will have training in both
medical knowledge and naturopathic medicine...
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