Pediatric Eosiniphilic Esophagitis and Eosiniphilic Duodenitis

FAS has upgraded our forum security. Some members may need to log in again. If you are unable to remember your login information, please email food.allergy.supt@flash.net and we will help you get back in. Thanks for your patience!

ajasfolks2:
OH gosh, lilpig, this must be so hard for you all.

The g-tube decision cannot be an easy one.

:grouphug:

lakeswimr:
Did you ever do a PPI trial to rule out that this is caused by reflux? I see you were scoped and diagnosed on the first scope. Was your child on a PPI for 6 to 9 weeks before that first scope? Reflux and EoE can't be told apart without the PPI trial or the new gene assay test that uses some biopsied tissue. It sounds like your doc then put your child on both a PPI and swallowed steroids, then took your child off both and on an elimination diet. If so, that sounds like your child may not have ever scoped after being on *just* a PPI without any food eliminations or swallowed steroid.

Skin and blood testing are not a good way to find EoE trigger foods. They are testing for IgE mediated food allergies and EoE isn't IgE mediated. Most EoE docs would not recommend pulling that many things based only on testing and would not recommend doing so if it wasn't helping.

Have you found a way to get a clear scope other than the meds? If the meds were working, why stop them?

Treasure:

--- Quote from: lakeswimr on April 27, 2016, 06:53:01 PM ---

Skin and blood testing are not a good way to find EoE trigger foods. They are testing for IgE mediated food allergies and EoE isn't IgE mediated. Most EoE docs would not recommend pulling that many things based only on testing and would not recommend doing so if it wasn't helping.

--- End quote ---

Hi lakswimr,

I was just reading through some posts and saw this. There is a subgroup of EoE cases where the triggers are also IgE mediated allergies in the patient. It is not as common as having the triggers be mediated by whatever the other antibody that usually triggers EoE, but it does occur. My son happens to be one of the people in this subgroup. He tests positive on both skin prick tests and blood tests to his triggers. He has several foods that he tests positive to on spt or RAST, but he only has classic IgE mediated reactions to some of them. Some of the others mostly just trigger his EoE (other than maybe eczema). Like dairy. We had no idea he was allergic to dairy, but when we pulled it from his diet, his EoE symptoms disappeared. He tested positive on the skin and blood tests for it. It's easier to test these patients, but the steroids generally don't work as well for them (as I understand it). I do know that there are some doctors not as up on the research of EoE that believe that standard way to test is by doing a RAST or SPT, and that it is not accurate for most people, but it is for this particular subgroup of patients.

lilpig99:

--- Quote from: lakeswimr on April 27, 2016, 06:53:01 PM ---Did you ever do a PPI trial to rule out that this is caused by reflux? I see you were scoped and diagnosed on the first scope. Was your child on a PPI for 6 to 9 weeks before that first scope? Reflux and EoE can't be told apart without the PPI trial or the new gene assay test that uses some biopsied tissue. It sounds like your doc then put your child on both a PPI and swallowed steroids, then took your child off both and on an elimination diet. If so, that sounds like your child may not have ever scoped after being on *just* a PPI without any food eliminations or swallowed steroid.

Skin and blood testing are not a good way to find EoE trigger foods. They are testing for IgE mediated food allergies and EoE isn't IgE mediated. Most EoE docs would not recommend pulling that many things based only on testing and would not recommend doing so if it wasn't helping.

Have you found a way to get a clear scope other than the meds? If the meds were working, why stop them?

--- End quote ---

We on a PPI prior to second scope, because I insisted. Our doc was somewhat unconventional in his approach. We got the clean scope after PPI and eliminations. He is now off of all meds. We are in the long process of re-introducing foods. We have passed, beef, corn, wheat, tomato, rice. We found that milk is a huge EOE trigger for him. I recently told the GI we wanted to add everything back into his diet aside from soy, fish, shellfish, his known EOE trigger (milk) and his classic allergies (egg, pn, tn). We are anxiously awaiting the results next week. This will take years and years off of our scoping protocol if he passes, and helps rectify the somewhat backwards approach. I am praying.

My daughter was diagnosed last year with EOE as well.

Macabre:
LiP it's good to see you. I was thinking of you last week and wonderful how you are.

I'm so sorry that your DD was diagnosed, too.

Now wow--really glad your DS has been able to add those things.

What a journey you've been on! Know that you have folks here who think about you. :heart: