eosinophilic esophagitis

[parttime]

Recently I was diagnosed for the 2nd time with EE.  The first time was in 2003 when I had a scope performed post a food impaction and my ended up with a tear in my esophagus from the dilitation.  This time I havent been able to eat anything solid for almost 3 weeks.  I was scoped last friday and a gentle dilitation was done. (The MD was afraid that the esophagus would tear again.)  He put my on Gastrcrom qid -(causes very bad gas and abdominal pain probably since I can't eat), Zantac 300mg bid, and a dose pack.  This is in addition to Prevacid 30mg bid, levbid 0.375 bid, donntal tabs qid as needed and nitro spray as needed.  My problem is that the esophageal spasms are not getting any better and are quite painful.  Mostly after dilitation they do improve, this time they aren't.  I am taking a ton of meds and I am still quite miserable.  Am I hopeful to assume that once I finish the dose pack I should see some results?  It is just awful, the heartburn and the spasms!!As well I can't eat much except Jello and some yogart. I do have food allergies as well as anaphylactic rxns to seafood and certain inalents.
I am 35 years old and have had reflux probelms with multiple food impactions since I was 22 years old.  I have been allergy tested before, but since I have anaphylacic rxns the allergies tend to tell me there isn't anyting I can do about that part. Is there something I am missing.  One person shouldn't have to be this miserable.

[Kevin Pho, MD]

Eosinophilic esophagitis can be a difficult condition to manage.  

Normally inhaled steroids are used first.  Steroid pills can also be used - with small studies perhaps suggesting they work better - if the inhaled steroids don't work.  You may want to discuss increasing the steroid concentration if the symptoms are still continuing.  

There are other options, including antihistamines as well as leukotriene inhibitors - which have been shown to work in smaller studies.

These other options can be discussed with your personal physician or gastroenterologist.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_b

[parttime]

We tried the inhaled steroids as well as Singular and they had little to no effect. (This was used back in May of 2003 along with the Gastrocrom.)  I am currently on a medrol dose pack - so should I see some results at the end at a minimim?

[noah'smom]

My 4 year old son was just diagnosed with eosinophilic esophagitis.  He's been diagnosed with many, many food allergies (milk, eggs, soy, beef, peanuts, treenuts, oats, rice, maybe wheat) and has been living off pediasure and chicken nuggets -- now we are told he can't have milk proteins -- no more of the limited foods he eats.  We'll be trying samples of Elocare, an RX liquid meal replacement & hope he likes it.  He never, never complains and denies feeling poorly but will vomit for no reason and doesn't eat very much.  His GI doc says he may outgrow this disease, but it sounds like it can go into adulthood.  Anyone have experience with liquid elocare for months on end?  Will he ever be able to eat chicken nuggets again (limited amounts of milk protein).
Do I panic now?

[parttime]

As a follow up - I was put on Prednisone 30mg daily - after about a week I have started to slowly begin to eat again (only bland soft food like peaches,jello.) I will be weaned slowly off prednisone by reducing the dose by 10mg every week until I am done.  What I did notice is that when I eat the foods that I am "allergic" to, especially foods in the "dairy" department that my reflux seems to bother me.  (Meaning the vomiting and other associated symptoms come back, but very suttle since I am eating very little of it. )
I spoke to my doctor about the food portion and believes since the steriods are working to reduce the inflamation (inflammation) that I will be able to eat my "allergic" foods again a bit more regularly.  I guess with this disease you have times when it flares up and you just have to be really patient until you can get it back under control.

[wowzer]

Has anyone had bloody stool with this EE? My son was just diagnosed and we are finding that the hospital here in Nashville are unable to help with his pain, any suggestions? His stomach hurts to the lightest touch. Is this happening to any of you?

[keylimepie]

The only research center in the world is Cincinnati Children's Hospital. My 16 year old has eos-esophagitis, eos-gastritis, eos-colitis and eos-enteritis, other wise known as EGID. My daughter suffered for years before the correct diagnosis and we relocated here to Cincy as have 6 other families. Most families fly in on a free med-flight. This is a life-long chronic disease that can be helped with the proper treatment for a lot of patients. There is a lot of suppoert here from Dr.s and other Eos families. God's blessings to you.

[Stardawg]

I am 37 years old and for the past 3 months have felt like I am goig to die very soon.

I was diagnosed with EE in Feb but didn't think it was that big of a deal.  My symptoms have forced me to the emergency room 5 times because I have felt my heart rate take off and behave erradicly.

Every time my heart and blood checked out fine.  They have did every scan on my body that can be done.  I am still worried I have a life threatening disease or heart or brain problems.

Is this all from EE.  Does anybody else out there have these thoughts?  

I have discomfort in chest with occasional points of ppain that seem to move around.  Shortness of breath and it seems like the middle of the night when I get hit with spasms in my esophagous and heart accelleration.  I sometimes have felt some kind of surges through my arms and head when these attacks hit.  I am scared to sleep now so I take an Ambien.

I take xanex because I am worried about attacks coming on.

I started to watch what I eat, but it doesn't seem to help.  Am I allergic to everything all of a sudden.  I was fine for 36 years - now I am falling apart!

I have lost 10 lbs in the last month.

Matt

[e2ng]

A related discussion, infamation of esophagous was started.