Eosinophilic Disorders

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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. :(
 
My son had been perfectly healthy and then was diagnosed with EE at 13 also. He was asymptomatic at the time of diagnosis - we were trying to rule out IBD because he has many other inflammatory problems that had suddenly begun. He now has arthritis, mouth ulcers, skin rashes, heart racing, facial swelling, extreme fatigue and now EE symptoms that come and go in flares every week or two. He has had minor seasonal allergies, but isn't allergic to any food items that they can determine. We have been battling this constantly for two years now. I am desperate to find a connection to his primary symptoms and EE. It is very hard to treat something you don't have a name for.

If anyone out there knows of EE being linked with other conditions, please let me know.

While this does not pertain to my son, I have been told that EE can be associated with parasites also. I don't know that I was able to help, but I will be praying for you and your daughter.
 
I am in the same boat.

We are in the beginning stages of this also. My 7 yo daughter has been suffering with reflux and constant belly aches since birth. She has been on every ppi with no relief. her last scope last july showed eosinophills at the top of her stomach but they didnt take any further biopsies up her esophagus. They are rescoping her in a few weeks to check the rest of the esophagus for eosinophills. If they find them then its most likely an allergy and they wil move forward with testing. if they indentify the allergen, we will eliminate in if not she will be on some sort of steroid. She had a milk protein allergy as an infant so they are sort of leaning towarRAB that direction.


I am oddly hoping its an allergy and they can find it and we can eliminate it. I and her have been dealing with this for too long now, I am starting to see the light at the end of this long tunnel.


Good luck to everyone.
 
Regarding the milk protein allergy -- can she eat beef? My son cannot have dairy or beef due to a cow protein sensitivity. They aren't sure whether it is that which causes his EE or something else. We did some food and environmental testing, but everything came back negative.
 
I dont know yet what she can and cannot have. Right now her scope is scheduled for 3/17 and if the eosinophils are seen in her esophagus then they will go ahead with her scheduled allergy tesing on the 3/26. THe only testing she has recently had was a lactose breath test which came back fine but her new dr informed that lactose and milk protein are different. I had no idea they were different

I hope its something they can find. Did they do a scratch, prick or rast test on your son?
 
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.
 
As soon as i lie down for bed i get a stuffed up nose. I just order drugs at totaldrugs24.com for allergies treatment. It will only be on that one side, if i role over that side clogs up and the other clears up. this has been going on for months. any ideas as what it may be ?
 
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 aciRAB
and vitamins/minerals so that the concentration of EE's will lower
and then she will carefully introduce least likely to be problematic
fooRAB one at a time. Her body puts the amino aciRAB 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.
 
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.
 
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 meRAB 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!
 
As to allergy testing, my dearest friend who has eosinophilic enteritis
went thru all the 'RAST' and skin allergy tests at the great Mayo Clinic
in hopes of learning of a few fooRAB her system might tolerate. The test
results were largely contradictory with skin contradicting RAST results
leaving a very small handful of non allergenic fooRAB usable. Furthur
investigation led to the understanding that these tests are to be regarded
as only 55% reliable. Hardly worth the bother. So I warn you not to
expect a great outcome with allergy tests. Possibly patch tests are more
reliable as they measure results over time and that seems to be likely a
more reliable way as to eosinophils developing.

As to the stuffy nose when prone that shifts from side to side, I'd guess
there are countless nurabers of folks out there who share that experience,
myself included. Have had it for years with only the degree varying. I am
usually told it's airborne allergens provoking my sinuses. Right now I am
trying to recover from a nasty flu and the sinuses are filling hankerchief
after hankerchief with mucuous morning to night. Anyway, I'd bet you
have a sinus reaction to some kind of allergen likely airborne.
 
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