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I'm just wondering how many of you, who have had a positive blood test, or endoscopy have/had high eosinophils?

I know it can mean other things but I thought it'd be interesting to see how many have high eosinophils

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I've been diagnosed with Celiac and EE too. From what I read, it's more common in boys than girls. In a first attempt to solve the EE, I tried swallowing Flovent for 12 weeks and had some success with it but the symptoms came back almost immediately after stopping the med. But, I'd rather not take a med if I don't have to.

EE is essentially an allergy so I opted to try to find the trigger. I kept a food journal for most of the year so far to determine the trigger for my EE. I was somewhat stumbled onto the trigger - Rice! I read excerpts of several books on food allergies to help come to this conclusion, along with the food journal.

Having celiac and avoiding rice is a real pain but I haven't had any problems since I stopped eating rice and products with rice in them.

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I've been diagnosed with Celiac and EE too. From what I read, it's more common in boys than girls. In a first attempt to solve the EE, I tried swallowing Flovent for 12 weeks and had some success with it but the symptoms came back almost immediately after stopping the med. But, I'd rather not take a med if I don't have to.

EE is essentially an allergy so I opted to try to find the trigger. I kept a food journal for most of the year so far to determine the trigger for my EE. I was somewhat stumbled onto the trigger - Rice! I read excerpts of several books on food allergies to help come to this conclusion, along with the food journal.

Having celiac and avoiding rice is a real pain but I haven't had any problems since I stopped eating rice and products with rice in them.

really? glad you figured it out! btw, do you happen to remember how high your eosinophils were?

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Well I have a GIRL with EoE. She will be 12 this month. Her eos count was 46 and she has absolutely ZERO symptoms. But then again she doesn't have any for celiac either. We go back in one week from today to have her 6 month celiac check and then we will decide what to do with the EoE. I have been avoiding all the foods she tested pos. on skin for in addition to gluten. We swallowed Flovent for 8 weeks and quit due to horrible side effects (emotionally crying for hours) This has been interesting because she tested positive to "rice" on skin but the allergist and two different GI docs told me to go ahead and let her have rice. They didn't think it was causing it and it is so hard to be newly gluten free without rice products. So I have been giving her rice. Now you have me wondering! Not to hijack the celiac board but would you scope her if she has no symptoms still????

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Momof2Boyz:

Sorry, I don't have the eosinophil count. I need to request a copy of my records because I've had that question before. Sorry. I saw images from my scope though and it was textbook EE.

1974girl:

I didn't have any noticable symptoms of EE other than occasional food getting caught in my esophagus (dysphagia). I started with the skin test too and only had celery show up (not part of my regular diet anyway) as the only allergen. I don't know if a skin allergy and EE are the same. I hesitate to give advice and can only say that rice is what I determined after keeping a very detailed food journal for 6 months plus reading on the side. I have no way of knowing if that's the only allergy but eliminating it from my diet has certainly helped. Others with EE have problems with peas, milk, etc... I'd have to be very diligent for a couple weeks and then get scoped to know for sure. I don't know if that's worth the info I get at this time.

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I know this sounds horrible, but you were kinda lucky you got food stuck. That is a big symptom and you could keep a food diary and find out what it was. She has nothing. No stuck food, no belly pain, no vomiting, nothing. I will have to scope her every 3 months according to one doctor and the 2nd opinion doesn't want to scope unless there is symptoms. We are avoiding all beans, peas, apples, pork, mustard, bananas, cantaloupe, oats, and tree nuts. (This is in addition to gluten for celiac. She tested negative for a true wheat allergy). Anyway, be thankful for your symptom that you could figure out what it was without rescoping a zillion times!

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I know this sounds horrible, but you were kinda lucky you got food stuck. That is a big symptom and you could keep a food diary and find out what it was. She has nothing. No stuck food, no belly pain, no vomiting, nothing. I will have to scope her every 3 months according to one doctor and the 2nd opinion doesn't want to scope unless there is symptoms. We are avoiding all beans, peas, apples, pork, mustard, bananas, cantaloupe, oats, and tree nuts. (This is in addition to gluten for celiac. She tested negative for a true wheat allergy). Anyway, be thankful for your symptom that you could figure out what it was without rescoping a zillion times!

Not sure where you live but Cincinati Children's has a specialty clinic set up for Eosinophilic Disorders and I think they're one of the few that offers this. You can find out more with a quick internet search. My experience has been that GI and Allergy doctors tend to know some info about eosinophilic disorders but not a complete picture. At least I haven't found one yet although I'm not actively searching either. It's a relatively new field and might be worth seeing an expert in this new field. And I share your frustrations on what to feed your daughter. Good luck!

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