[azmom3]

My 2 year old had his endoscopy on Wednesday, looking for celiac and/or eosinophilic esophagitis. The dr. said it does not appear to be celiac (but I realize this doesn't mean he doesn't have it for sure, especially with his age), but that he DOES have eosinophilic esophagitis. We are doing the gluten free diet anyways, although our son will most likely be on a no foods, just Elecare, diet for the next 6 weeks so his esophagus can heal. We are doing additional allergy testing and still waiting on some other blood work to come back, (including the celiac panel), so hopefully we will know more next week. It's funny...one of my friends asked me how I was doing and I told her a huge weight had been lifted. We have an answer and can start treating him and making him better....that's the best kind of news in the world! I realize there might still be other stuff going on, but I truly believe this is a big part of it and know that we're at least heading in the right direction. And if he does have celiac, too, then we're doing the right thing in going gluten free also.

[Helena]

Wow, that's a lot to deal with. But that is great that you have a diagnosis---it is scary not to know what's wrong. Keep us updated on how things go with the diet. Did the doctor check for eosinophils elsewhere in the GI tract as well?

I've been wondering if I should get checked for ee . . . but I'll probably need to get a referral to a new GI doc so it will take awhile.

[azmom3]

Helena, on Dec 9 2006, 12:07 AM, said:

Wow, that's a lot to deal with. But that is great that you have a diagnosis---it is scary not to know what's wrong. Keep us updated on how things go with the diet. Did the doctor check for eosinophils elsewhere in the GI tract as well?

I've been wondering if I should get checked for ee . . . but I'll probably need to get a referral to a new GI doc so it will take awhile.

With all your food and environmental allergies, I would definitely look into it if I were you. I'm telling anybody with lots of allergies to ask their dr about it. It can't hurt to ask, right? But it can certainly cause problems if you don't know you have it. The older you get, the more problems you can have....choking, etc. We had already removed things from our son's diet that we had positive results through allergy testing, but he still had a high eosinophilic count, so we've got to figure out what's causing it.

I am still going through Nini's newbie packet and a bunch of other "new people" stuff for the gluten-free diet. There's so much to learn. I'm not going to beat myself up for making mistakes, but will try to get this right as quickly as possible. I'm leaning towards keeping my other two kids on gluten until after I talk more with our dr's and see if they need to be scoped for EE as well, as they have a higher risk of having it and both have lots of environmental and seasonal allergies... havent' tested for foods yet. I figure if they're going to do the endoscopy anyways, I'd like them to check for celiac at the same time.

Good luck to you...find a good GI doctor who is knowledgeable with EOS.

[Helena]

Thanks for the advice. I do think there is a good chance that I have it--I have all those allergies, high eosinophil levels in my blood, mild swallowing problems (dry meat), mild reflux problems + evidence of tissue damage ("laryngeal inflammation" the ENT said several years ago). I did ask my GI doctor about it the last time I was in . . . but he is really not interested in pursuing this. Hence the need for a new GI doctor.

My respirologist originally sent me to the GI doctor to discuss both eosinophilic esophagitis and reflux meds (I found these journal articles suggesting that prescription meds which reduce the amt. of acid in one's stomach can lead to the development of allergies on the part of those who are already genetically predisposed to get allergies. I stopped taking my proton pump inhibitors.) We got sidetracked with the celiac disease issue (and I'm very grateful that he ran those blood tests). When I originally asked my respirologist about ee, I didn't know that much about it---and I wasn't all that concerned, really. My concern lay more with the fact that I was treating the reflux with the wrong medication. And there was a period of time when the reflux went away---I thought that going gluten free would do it and figured that I wouldn't need to worry about looking into ee. But now that I've been reading all this info. about ee here I do want to follow through with it.

Anyhow, I see my respirologist again in Feb. and I imagine that she will refer me to someone else if that's what I want. I should probably ask my allergist about this too. I didn't mention it to him because my respirologist is the one more concerned about the reflux.

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Quote

I'm not going to beat myself up for making mistakes, but will try to get this right as quickly as possible. I'm leaning towards keeping my other two kids on gluten until after I talk more with our dr's and see if they need to be scoped for EE as well, as they have a higher risk of having it and both have lots of environmental and seasonal allergies... havent' tested for foods yet. I figure if they're going to do the endoscopy anyways, I'd like them to check for celiac at the same time.

Yes, dealing with all these major health problems is tough. There's so much to learn! I feel sorry for parents of kids with major dietary restrictions because it is hard to feel responsible for someone else's health--and it is so difficult to control one's environment. I can see the advantage to waiting to test for celiac----because if you take them off gluten in the meantime, they probably won't ever have a definite diagnosis. Not that I think that you definitely need one for celiac, but it makes dealing with doctors easier. Also, it is good to know for sure and it is hard to tell with little kids.

[celiac36]

azmom3, on Dec 8 2006, 09:58 PM, said:

My 2 year old had his endoscopy on Wednesday, looking for celiac and/or eosinophilic esophagitis. The dr. said it does not appear to be celiac (but I realize this doesn't mean he doesn't have it for sure, especially with his age), but that he DOES have eosinophilic esophagitis. We are doing the gluten free diet anyways, although our son will most likely be on a no foods, just Elecare, diet for the next 6 weeks so his esophagus can heal. We are doing additional allergy testing and still waiting on some other blood work to come back, (including the celiac panel), so hopefully we will know more next week. It's funny...one of my friends asked me how I was doing and I told her a huge weight had been lifted. We have an answer and can start treating him and making him better....that's the best kind of news in the world! I realize there might still be other stuff going on, but I truly believe this is a big part of it and know that we're at least heading in the right direction. And if he does have celiac, too, then we're doing the right thing in going gluten free also.

[celiac36]

Helena, on Dec 10 2006, 03:32 PM, said:

Thanks for the advice. I do think there is a good chance that I have it--I have all those allergies, high eosinophil levels in my blood, mild swallowing problems (dry meat), mild reflux problems + evidence of tissue damage ("laryngeal inflammation" the ENT said several years ago). I did ask my GI doctor about it the last time I was in . . . but he is really not interested in pursuing this. Hence the need for a new GI doctor.

My respirologist originally sent me to the GI doctor to discuss both eosinophilic esophagitis and reflux meds (I found these journal articles suggesting that prescription meds which reduce the amt. of acid in one's stomach can lead to the development of allergies on the part of those who are already genetically predisposed to get allergies. I stopped taking my proton pump inhibitors.) We got sidetracked with the celiac disease issue (and I'm very grateful that he ran those blood tests). When I originally asked my respirologist about ee, I didn't know that much about it---and I wasn't all that concerned, really. My concern lay more with the fact that I was treating the reflux with the wrong medication. And there was a period of time when the reflux went away---I thought that going gluten free would do it and figured that I wouldn't need to worry about looking into ee. But now that I've been reading all this info. about ee here I do want to follow through with it.

Anyhow, I see my respirologist again in Feb. and I imagine that she will refer me to someone else if that's what I want. I should probably ask my allergist about this too. I didn't mention it to him because my respirologist is the one more concerned about the reflux.




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Yes, dealing with all these major health problems is tough. There's so much to learn! I feel sorry for parents of kids with major dietary restrictions because it is hard to feel responsible for someone else's health--and it is so difficult to control one's environment. I can see the advantage to waiting to test for celiac----because if you take them off gluten in the meantime, they probably won't ever have a definite diagnosis. Not that I think that you definitely need one for celiac, but it makes dealing with doctors easier. Also, it is good to know for sure and it is hard to tell with little kids.

[celiac36]

I started tests for problems swallowing food back in January (but started 5 yrs ago). I went for an unproductive ENT appointment, a Barium Swallow that showed nothing and another unproductive ENT appointment. I then went to a GI and got an upper endoscopy in January. I was put on a steroid inhaler and didn't want to continue that. They sent me to an allergist and said, come back in 2 months. After 2 tests at the allergist, they gave me a list of 14 food allergies, and said, "Good Luck. Try not to eat those things". Not really all together helpful, but a clue. I then saw an internist who tested me for several things (celiac dis. at my request), after a complete history, and within 2 visits, was diagnosed with Celiac at 36 yrs old...yesterday! He explained how it's all related and how vitamin dif. are a part as well. If there are a large amount of allergies, look into it. He thinks I had it since I was 12/13 yrs old. One simple blood test and there was the solution. Too many dr. visits to lead to one simple blood test. Hopefully, soon, they will recognize it sooner. Best of luck! It's a lifestyle change, from what I hear.

[bear6954]

Yahoo groups has a support group for EE - eosinophilgastro is the name of the group. Kids range from severe to mild symptoms. Some drs do meds first others do elimination diet.

[mommida]

I checked into some sites for EE and they want you to pay. Not easy for us right now since we have had to pay for emergency hospitalizations and then for the testing and diagnoses. We are so very lucky to have the gluten free forum FOR FREE. Even the site for children's allergy network wants $ up front.

We have members here with Celiac and EE, and members with EE ~ because gluten is their "trigger".

We are still running through the elimination/rotation diet. I am lucky enough to see the whitish spots on my dughter's tonsils. I remember reading some posts about people wondering about "whitish bumps/lumps/seeds" on their tonsils and now I think we have more undiagnosed EE and I am waiting for a proven connection to Celiac. ( EE just got a standard medical code in October of 2008, now the statistics and correlation data can be collected.)

[Tammyvon]

Helena, on Dec 10 2006, 06:32 PM, said:

Thanks for the advice. I do think there is a good chance that I have it--I have all those allergies, high eosinophil levels in my blood, mild swallowing problems (dry meat), mild reflux problems + evidence of tissue damage ("laryngeal inflammation" the ENT said several years ago). I did ask my GI doctor about it the last time I was in . . . but he is really not interested in pursuing this. Hence the need for a new GI doctor.

My respirologist originally sent me to the GI doctor to discuss both eosinophilic esophagitis and reflux meds (I found these journal articles suggesting that prescription meds which reduce the amt. of acid in one's stomach can lead to the development of allergies on the part of those who are already genetically predisposed to get allergies. I stopped taking my proton pump inhibitors.) We got sidetracked with the celiac disease issue (and I'm very grateful that he ran those blood tests). When I originally asked my respirologist about ee, I didn't know that much about it---and I wasn't all that concerned, really. My concern lay more with the fact that I was treating the reflux with the wrong medication. And there was a period of time when the reflux went away---I thought that going gluten free would do it and figured that I wouldn't need to worry about looking into ee. But now that I've been reading all this info. about ee here I do want to follow through with it.

Anyhow, I see my respirologist again in Feb. and I imagine that she will refer me to someone else if that's what I want. I should probably ask my allergist about this too. I didn't mention it to him because my respirologist is the one more concerned about the reflux.



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Yes, dealing with all these major health problems is tough. There's so much to learn! I feel sorry for parents of kids with major dietary restrictions because it is hard to feel responsible for someone else's health--and it is so difficult to control one's environment. I can see the advantage to waiting to test for celiac----because if you take them off gluten in the meantime, they probably won't ever have a definite diagnosis. Not that I think that you definitely need one for celiac, but it makes dealing with doctors easier. Also, it is good to know for sure and it is hard to tell with little kids.

Hello, I have so many of the same issues and results from Doctors. I was wondering, what was your EE number. You said it was high. Mine was very high too.