Eosinophilic Disorders - Allergies Message Board

LALOV929 · 09-16-2008, 12:42 PM

Does anyone on this board have knowledge about eosinophilic
disorders as caused by allergy? A dear friend has just learned
she probably has eosinophilic esophagitis which is apparently
considered to be from an allergy of some kind. She has had a
lifetime of food allergies. All input appreciated. Thanks.

Twinsmomct · 10-25-2008, 12:59 PM

From what I've learned because my son was recently diagnosed, EE is a reaction to an allergen. The doctor told us we may never know what is causing EE but we had some blood work done to see if there were any obvious food allergies. There weren't. They are treating my son with Prevacid for acid reflux and Pulmacort/Splenda to reduce the swelling in the esophagus.

LALOV929 · 10-26-2008, 11:06 AM

Thanks Twinsmomct, I was beginning to think no one out there
knows about EE. My friend was diagnosed by biopsies taken
from her esophagus, stomach and duodenum. A high level of
EE was found in all locations. She has not been able to consume
solid food for a year now and since the only allergens are proteins
she has been switched to an elemental diet of only amino acids
and vitamins/minerals so that the concentration of EE's will lower
and then she will carefully introduce least likely to be problematic
foods one at a time. Her body puts the amino acids together in
such a way that the resulting proteins will not cause EE to
accumulate. I wonder if your son has been put on such a
special diet. Or what is being done in his case. Of course there
are several airborne allergens like insect bodies in the air we breathe.
It's a rather newly and not well understood condition so I am
seeking any information that might be out there that might help.

Twinsmomct · 10-27-2008, 05:12 AM

Right now we're still in the beginning stages of treatment. My son's EE doesn't sound as severe as your friend's, though. He's able to eat what he wants since we don't know what's causing the swelling. My son wasn't symptomatic -- he had an endoscopy and colonoscopy due to another issue and they discovered this problem. We've been doing the Pulmacort treatment for over a month and he doesn't seem to be eating any differently than before except that maybe he's getting a bit more. We go back to the gastro next month to see if things look better -- not sure how he's going to tell without scoping him again.

I've heard of the elemental diet on some of the websites I've done research on. I hope your friend is feeling better soon.

dodgecty · 11-21-2008, 04:58 PM

My 13 year old daughter was diagnosed with eosinophilic gastroenteritis with ulcerative duodenitis several weeks ago after much testing, and endoscopy and many biopsies. She also had type 1 diabetes and is on an insulin pump. a week and a half ago she was admitted to the hospital with dehydration, "spreading" Gi symptoms, weakness and complications. To make a long story shorter, she was placed on a nj feeding tube with elemental formula only. She can have water and sugar by mouth when her blood sugar drops. We have many appointments scheduled and some allergy and immunology testing has already taken place. She is on numerous meds by tube and they seem to be helping with her pain. I am confused by all of this, because prior to two months ago when she started having excruciating stomach pains, she never had food allergies/ sensitivities or stomach issues. It kinda came out of the blue. She had several migraines and asthma attacks the week she started having pain, but that was it.
I am trying to find information to help me understand this disorder, and also am hoping to find someone else who was diagnosed as an older child and maybe even someone successfully coordinating Eosinophilic gastroenteritis and type one diabetes control.
Thanks for listening!