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RAST testing/IEE treatment

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I have seen so much contradictory information on the subject of EE and

RAST and/or skin testing that I have come to believe that neither is a

reliable marker of disease in EE. THere are many allergists (and most

peds GI) that agree with me. There are too many instances where a food

is RAST/skin NEGATIVE and the patient becomes symptomatic or even biopsy

positive. Open food challenges and close follow up and (initially at

least) frequent bx's on strict diets are the only answer.

I also am most interested in the long term. Since (another on

the list) has succeeded on the diet, at least SYMPTOMATICALLY, it will

be VERY interesting to see how his biopsies look now. I hope they are

still clean, but I am skeptical. As in EG, I think the disease has a

relapsing/remitting quality to it and eventually if left untreated (as

in my case) the damage is irreversible. There are also different

degrees of disease process, some kids much more affected than others (my

Kody versus the others).

Thought I would share our final decision on disease treatment with those

IEE on the list, since mine is a such an unusual situation I have lived

with this disease for over 35 years now and I have seen/experienced the

treatments versus living with the disease. For my children, we will

treat aggressively. They will remain on elemental formulas and we will

attempt to get a few foods in them for purely social reasons -- so they

can sit at a table with friends and eat something. I will remain on

elemental diet and will not even try to eat (for what purpose, I can't

swallow anymore anyway). I will have the kids bx's frequently as we try

to add new foods and will weigh more heavily on objective biopsy results

than subjective reports.

My thoughts. Sorry so long. But I do think we have much to say/add to

this issue. As an aside, my last EGD showed return of one of my

strictures, " ringed " appearance is back and that area still has some

eos. THe other biopsies were clean and the second stricture is still

open.

-- Idiopathic Eosinophilic esophagitis; Soon to be GT; Mom to

15, IEE, NIssen/GT; Ken,11, IEE (GT soon); Korey,7, IEE (GT soon);

Kody, 4, IEE/CIPO. G/JTs;TPN; Killian,2, IEE (GT soon);

SJHarlow@...

http://www.c4isr.com/harlow

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