Treatment

I've been diagnosed with EoE. My doctor is only treating it with proton inhibitors. I wanted him to explore the allergy aspect of the condition.

How is your doctor treating you?

Report post

9 replies. Join the discussion

Welcome! We are glad you found EOS Connections and hope you find the support you are looking for here. For more information about Eosinophilic disorders and resources are available on www.apfed.org. We also look forward to hearing what the members in our community have to suggest.

Report post

Were you on protein inhibitors prior to the scope? If not, I understand why your doctor is holding off on further treatment. Protocol suggests that before confirming EoE, a patient must have eosinophils present while on reflux medications. Otherwise, the eosinophils could be attributed to reflux.

Our doctor started our son on Prevacid and referred us to an allergist immediately, but every GI is different. You can always call back and ask about a referral to an allergist.

Report post

I was on a standard one 15 mg dose a day of Prevacid before the scoping. But now he has me on 30 mg twice a day.

The doctor's nurse called yesterday and said that I had EoE. They have alwlays called it EoE since the first emergency room visit several months ago when I was first scoped. She also said, no doubt because of my request, he was referring me to an allergist.

I'm new at this and somewhat confused by the nomenclature. From what I read, it appears that anytime eosinophils appear at a certain high level when scoping, it is called EoE. But the causes can be either from allergens or from gastric reflux. Do you know the answer and if that is correct?

Report post

OldestCity,

Eosinophilic Gastrointestinal Disorders (EGIDs) are characterized by having above normal amounts of eosinophils, in one or more specific places anywhere in the digestive system. EGIDs include: eosinophilic esophagitis (esoghagus), eosinophilic gastritis (stomach), eosinophilic gastroenteritis (stomach and small intestine), and eosinophilic colitis (large intestine). There are many other disorders that are associated with elevated numbers of eosinophils, including gastroesophageal reflux disease, however, a good number of patients who have an EGID have food allergies.

Report post

OldestCity, Did you have a scope and biopsies of your esophagus? If biopsies were taken you need to find out how many Eosinophils were present .... PPI will not control EoE! although many of us with EoE also have reflux/GERD and need a PPI . You control EoE by diet (eliminating your trigger foods) or by med... such as swallowed Flovent or a combo. Definitely check out the APFED website !

Report post

I also was diagnosed with EoE about 2 months ago. My GI Dr has been great in leading me in treatment. He did say that my Eosinopils were biopsied and my number was 50 and normal #'s should be 15. I also had a stricture that was dilated caused by acid reflux (that I didn't know I had~it was a silent AR). He immediately put me on priolsec daily and Flovent. He also told me that EoE was something commonly diagnosed in children and as recently as 5 years is being found in adults. He also said that as his patient if I was a child he would have me go through allergy testing and referred me to an allergist. The Allergy Dr. did environmental and also food allergy testing which showed ALOT of allergies (food and environmental). He put me on zyrtec and nasal spray for environmental allergy and put me on a restricted diet because my allergies consisted of corn, dairy, seafood and a few fruits. If simply eliminating these food from my diet help EoE then it is worth it! I would suggest allergy testing so you are more aware of what your allergy is. Good Luck!

Report post

I just wanted to add that another option for treatment is taking 150 mg Zantac and 10mg zyrtec each day to keep the EoE symptoms under control. I feel like it works better than the flovent with less side effects.

Report post

Hi OldestCIty. From what our doctors told us and the research I have done, they have to rule out that eosinophils are not related to gastroesophageal reflux. It is atypical for there to be eosinophils in the esophagus period but sometimes eosinophils are present because of reflux (usually the numbers are much lower). In order to officially diagnose EoE, the doctor must treat it first with an aggressive dosage of a proton pump inhibitor (for us, our son was getting 20 mg of Nexium twice a day for two months before his next scope). If the number of eosinophils is still significant, then they formally diagnose it although it is likely a "working diagnosis" prior to the official one. Continued use of a proton pump inhibitor can aid in some of the alleviation of reflux symptoms that often go along with EoE but it does not treat the underlying cause. I am glad to hear you are being referred to an allergist. Good luck with everything!

Report post

Deborah59, I've been scoped 3 times with biopsies. I requested the biopsy reports and my eosinophil count was listed as > or = to 15. Don't know why it didn't have an actual number.

I noticed you and several others mentioned that PPI will not control EoE. My doctors however, are saying that it does and that they don't know why. They even said, if you only have gastric reflux which is causing the eosinophils, you will have to be on high dosages of PPIs for the rest of your life. And if you do have EoE, you will be on PPIs for the rest of your life. Either way. It should be noted the PPIs seem not to help any acid feeling I have in my stomach. I've even suspected I may have some reaction to an inactive ingredient in the PPI.

However, despite all this, they have sent me to an allergist. I did the prick test and it showed no allergic reactions to common food allergies and only allergies to some grasses and mold. I am currently doing a food patch test for 48 different foods which are presently taped to my back.

The funny thing is, that for the patch test, I have to be off of the PPIs for at least a week because they say PPIs act a lot like anti-histamines (It seems to me, this is why the PPIs would help with EoE). I was concerned about this, because I thought I would have too much acid. Well, the first week, I did with burping which my doctor said might happen. Then they called and said that they would have to delay the test because of lack of supplies. So by the second week of no PPIs, I hardly felt any acid and when I did, eating pretzels or snacks got rid of it. So, now I'm halfway through the thrid week without PPIs and I almost feel normal. It's as if the PPIs actually are giving me more acid.

So, today, I go back to see if there is any reaction to the food patch test. Hope there is so I can eliminate those foods. But, I have my doubts.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support APFED

Help the American Partnership for Eosinophilic Disorders reach its goals and support people like yourself by making a donation today.

Donate to the American Partnership for Eosinophilic Disorders

Discussion topics

EOS Resources from APFED

More from APFED

APFED's Educational Webinar Series
"Answers from Experts"
Sponsored by EleCare®

APFED's Educational Webinar Series

Community leaders