Eosinophilic Esophagitis

[bear6954]

My 2 1/2 yr old son was diagnosed with celiacs and EE in May of 08. We went gluten free and he was on a three month course of prednisolone. He did wonderful - no more vomiting, acid reflux etc. He had been off of the prednisolone since August. Lately he has been complaining of his chest hurting. When he drinks and burps there is normally vomit in it. Last night he was eating a grilled cheese and the food got stuck in his throat and he threw up everywhere. A few minutes later he was hungry again. He ate and it all stayed down (this time I gave him noodles).

Have any of you had a reoccurance with your children with EE? If so, did you do prednisolone again or some other treatment? Finally, do you have any recommendations for acid reflux medi that does not contain gluten?

Thanks,

Lisa

[pixiegirl]

I have EGID, all over my GI tract really. I have good times with it and bad. But over all since I went thru a ton of allergy testing and now try and avoid the foods I'm allergic to (there are so many its difficult) I'm doing better. My allergist gave me an Rx for gastrocrom, its a liquid you put in water before you eat and its stops mast cells from happening (so really stops or minimizes the allergic reaction). I've been on it now for about 3 years and I've had far fewer problems since I've been taking it.

Its got very few side effects and risks and my Dr. told me I can take it for the rest of my life without any real worries. You might want to talk to your Dr. about trying it. It doesn't work for everyone and it takes weeks to make a difference, at least a month in my case.

I never took steroids for this, at least not yet. I got close but I wanted to try to avoid them, they are so powerful and have so many side effects. Between watching my diet and the gastrocrom I'm doing fairly well.

Susan

[mommida]

My daughter was diagnosed "probable" Celiac when she was 17 months.

She was just diagnosed with EE on the 17th. So we are new to this. She has her appointment with the allergist on Monday the 29th.

Is it possible your son has developed a new allergy causing the EE? What did the allergist say the allergens are, because it is possible to be inhaled not just ingested.

My daughter was put on Flovent to be swallowed not inhaled for seven weeks.

Any advice for the newly EE diagnosed would be appreciated.

Laura

[happygirl]

A very good resource for EE and related disorders is www.apfed.org ..... absolutely wonderful.

[Mike M]

My 2 1/2 yr old son was diagnosed with celiacs and EE in May of 08. We went gluten free and he was on a three month course of prednisolone. He did wonderful - no more vomiting, acid reflux etc. He had been off of the prednisolone since August. Lately he has been complaining of his chest hurting. When he drinks and burps there is normally vomit in it. Last night he was eating a grilled cheese and the food got stuck in his throat and he threw up everywhere. A few minutes later he was hungry again. He ate and it all stayed down (this time I gave him noodles).

Have any of you had a reoccurance with your children with EE? If so, did you do prednisolone again or some other treatment? Finally, do you have any recommendations for acid reflux medi that does not contain gluten?

Thanks,

Lisa

Hello Lisa, Cincinnati Childrens is an international leader in EE and I highly recommend them. They have a program that you can bring your child in for a consult and testing. I am a patient of theirs (EE) and they do an awesome job. So far with the removal of gluten, I have not needed to take any medications. Hopefully you are aware that a lot of labeled/marked "gluten free" foods do contain some level of gluten in them. Once I figured this out, I saw a dramatic improvement. Do keep in mind there can be other triggers with EE, food and other airborne allergens. (dogs cats, pollens ect ect.) It is very important to have skin prick and patch testing done to rule in or out what is going on. All the best, Mike

P.S. I eat small frozen banana pieces and/or blue berries to help sooth the discomfort when I flare up and the pain starts. Be careful though with this so he does not get this stuck in his throat. Maybe shaved ice would be safer. I feel so bad for your son. When he says it hurts, it hurts! Hang in there, it will get better!

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[bear6954]

Thanks for the support. When the dr told me that they found ee when they did the endoscopy, i asked a ton of questions. I was told that they do not know what causes it. He has not had any food that he has not had since the first round of steroids. I am wondering if Zyrtec does not bother him or Claritin. I really dont want to subject him to an allergy test right now. They are painful and he has had enough pain in the last year or so. I will check out the web sites you guys suggested. As for Ohio, I am currently living in NC and my husband is getting ready to leave for Iraq in January for 13 + months. Between my husband leaving and the drive with two children (on in 5 day a week preschool) its about impossible. But i will talk over your suggestions with the ped gi dr when i can get a hold of him!

[Mike M]

Thanks for the support. When the dr told me that they found ee when they did the endoscopy, i asked a ton of questions. I was told that they do not know what causes it. He has not had any food that he has not had since the first round of steroids. I am wondering if Zyrtec does not bother him or Claritin. I really dont want to subject him to an allergy test right now. They are painful and he has had enough pain in the last year or so. I will check out the web sites you guys suggested. As for Ohio, I am currently living in NC and my husband is getting ready to leave for Iraq in January for 13 + months. Between my husband leaving and the drive with two children (on in 5 day a week preschool) its about impossible. But i will talk over your suggestions with the ped gi dr when i can get a hold of him!

EE is "another" one of the rather gray areas of modern medicine in that the Doctors don't seem to be real sure. Fact of the matter is unless the EE is visible during the scope, they most often miss it. 87% of all "EE" cases can be cured or at least brought well under control without medication by finding the trigger(s). Skin prick when done properly can hardly be noticed as it is done with the first layer of skin and blood should not be present. I thought they where still marking my skin with a marker and the nurse was half way finished with mine! Patch test will be totally painless unless there is a reaction and then it does burn. Oats in my case. Anyway, hope it all works out for you and your son. All the best, Mike

P.S. I tested Claritin D with a gluten test kit.........I can't use it.

[bear6954]

EE is "another" one of the rather gray areas of modern medicine in that the Doctors don't seem to be real sure. Fact of the matter is unless the EE is visible during the scope, they most often miss it. 87% of all "EE" cases can be cured or at least brought well under control without medication by finding the trigger(s). Skin prick when done properly can hardly be noticed as it is done with the first layer of skin and blood should not be present. I thought they where still marking my skin with a marker and the nurse was half way finished with mine! Patch test will be totally painless unless there is a reaction and then it does burn. Oats in my case. Anyway, hope it all works out for you and your son. All the best, Mike

P.S. I tested Claritin D with a gluten test kit.........I can't use it.

Thank you so much!

[happygirl]

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[mommida]

Well the scratch test revealed no allergies.

She has an appointment on January 21st for the patch testing.

Lisa,

If you aren't doing the allergy testing, are you trying elimination diets? Have the Dr.'s reccomended the liquid diet supplements?

Mikeand Happy Girl

May I ask what age you were diagnosed at and do you feel that EE "flares" up occasionally without a connection to a known allergy? If you were diagnosed younger, did you "outgrow" some of your allergies?

and Susan thanks for the advice for Gastrocom.

[Mike M]

Well the scratch test revealed no allergies.

She has an appointment on January 21st for the patch testing.

Lisa,

If you aren't doing the allergy testing, are you trying elimination diets? Have the Dr.'s reccomended the liquid diet supplements?

Mikeand Happy Girl

May I ask what age you were diagnosed at and do you feel that EE "flares" up occasionally without a connection to a known allergy? If you were diagnosed younger, did you "outgrow" some of your allergies?

and Susan thanks for the advice for Gastrocom.

Hello mommida, 45 years old for me. HHmmm, I am confident I have had this EE my entire life. In particular as a child up to oh, say early teens. I had lots of chest pain/vomiting as a child, taken many times to the hospital with parents thinking I had a heart problem because of the chest pain and then it went away, nothing that I ever noticed until about 5 years ago with regard to the EE. No pain or discomfort during most of adult life as far as EE goes.. Then I had a piece of pork chop that got "stuck" and I seemed to have to concentrate on swallowing my food after this with lots of water (I never thought much of this as my Grandmother had difficulty with swallowing most of her life, She lived to be 78 years old) then things seemed to worsen as far as pain is concerned. I would describe a flare as "volcanic" heart burn. Unbelievable pain. Since going gluten free, this has only happened once when I tried the certified gluten free oats. It took a couple of months to get over this and I swallow with ease and have no need of even drinking water with a meal if I don't want. Oats was the only positive patch test for me and they said it was the worse reaction they had seen in years. It blistered and I now have a permanent scar on my back that looks like a burn from a cigar. Skin prick showed almonds and squash. I still think there are other triggers for me. Summer time mowing the grass and possibly ketchup and corn even though the prick and patch test show no allergy to these. I had a RAST test done and it did show sensitivity to these foods. Hope this helps. All the best, Mike

P.S. As and adult being down at Cincinnati Children's Hospital, it is rather funny at times. The last time I was down and waiting in the room for the doctor, the nurse stopped in and said, the doctor will be right in! Did your son go to the restroom? They don't get that many adults!

[mommida]

My daughter has just thrown up twice. I'm watching the clock to see if we will need to get to the hospital for dehydration, again. Is there anything that can help at this point? I just gave her some of the Zantac. It seems to be staying down - so far.

Should we try and get her to drink more water?

Laura

[bear6954]

I finally got a hold of the gi dr. we are going in for a gastric emptying scan next month. the dr wants to make sure his stomach is emptying on time and this will also diagnose gerd. When your daughter throws up does she retch really hard and completely empty her stomach? My son has burst blood vessels in his face from throwing up and when he does burst the vessels he empties his complete stomach - breakfast, lunch and dinner. Then 10 minutes later he askes for food and it stays down! its so weird and i feel so sorry for him for hurting and I can not help him right now. The dr also wants us to give him mylanta 4 times a day. Today is the second day for the mylanta and he tells me his throat does not hurt. I think he has gerd and that aggervates the EE. We will soon find out!

[Mike M]

My daughter has just thrown up twice. I'm watching the clock to see if we will need to get to the hospital for dehydration, again. Is there anything that can help at this point? I just gave her some of the Zantac. It seems to be staying down - so far.

Should we try and get her to drink more water?

Laura

Gosh mommida, I am not a doctor. I would not hesitate to go to the hospital if you think there is dehydration. I can say that the Zantac that I tested did not contain any detectable gluten. When I had a bad flare, I would take childrens liquid Benadryl, this also tested negative for gluten and it did help me a lot. Shaved ice may also help with any discomfort. I am sorry you are having a tough time. All the best, Mike