Guest guest Posted March 28, 1999 Report Share Posted March 28, 1999 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 Quote Link to comment Share on other sites More sharing options...
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