EE (Eosinophilic Esophogitis)

[amandasmommy2]

Open Original Shared Link One more food allergy and lactose intolerance my 10 year old has to deal with. we wont find out till tuesday what the other allergy is. i dont wanna feed her what she is allergic to anymore, i can't wait till tues. anyone else have or have heard of this EE decease???

[mommida]

Yes, my daughter was diagnosed when she was 6. That added to her probable Celiac diagnoses when she was 17 months old. She is now 10 too!

There are EoE peeps here on the forum. Some are here because gluten is one of their triggers. There is a known connection between EoE and Celiac. (JAMA Nov. 2011)

I don't want to burst your bubble, but allergy testing is not reliable to identify all "triggers" for EoE. An elimination diet is often a first line of defense to find "triggers". Like allergies the reaction is mainly caused by proteins. There are amino acid based formulas that can be helpful for nutritional supplements.

Please remember, I will always give advice on the experience from my daughter's case and the limited research available.

[beebs]

Oh my goodness, I just came on here to post something about this very thing. I have just been diagnosed with EE on friday. I was reading this study that is on this site about how it is more common among celiacs to have EE than the general population. The plot thickens. Anyone any good at data analysis?

Standardized incidence ratio was 35.6 (95% CI, 9.3-79.0) for children, and 13.1 (95% CI, 6.2-22.5) for adults. Overall, age-adjusted and sex-adjusted standardized incidence ratio was 16.0 (95% CI, 8.7-25.5).

The above is what the study found, any idea what it means?? Does that mean 35.6% of celiac children and 13.1% in adults? Or am I getting it all wrong?

There is so clearly a connection between everything I have, it is starting to get me down though. Just another thing to add to the list!

[mommida]

I thought that article was written in a "goobly-gook" manner. I now that adult cases and child cases are diagnosed on a different count of eosinophils.

It seems the standard care for a child at diagnoses...

Prevacid

modified Flovent inhaler(so the liquid is swallowed not inhaled)

allergy testing

an elimination diet (eliminate all top 8 allergens and peas)to identify "triggers"

complications are dealt with as they develop. pain~ sometimes rest and slurpees work wonders, constipation is a daily battle, headaches, bad breath and scratchy throat.

My daughter has not needed surgical dilation or a feeding tube.

All of her known triggers are kept out of the house. We have noticed there is a seasonal airborne connection/flare.

[1974girl]

Add my 12 year old to the EE list. She has no symptoms if it. No swallowing issues or food getting stuck. They found it on accident on the way down to take the celiac biopsy. We have eliminated everything that was positive in the skin test and her patch test showed nothing. After eliminating all beans peas apples pork mustard gluten cantaloupe and bananas, she still scoped with EE. The "by the book" doctors will tell you to eliminate and rescope every 3 months but that's thousands of dollars for us and she has no symptoms we have scoped twice and the gi doc thinks it may be the fall allergies that made it bad this time. It may not even be food. She did not want me to do the elimination diet until she had symptoms. So that's where we are now. We avoid what showed up but will not keep scoping or eliminating more foods until she has a symptom.

[mommida]

I agree with 1974 girl. You have to draw the line on how much scoping you are going to do.

My daughter was scoped during the elimination diet. (everything was clear and normal) That's when we started challenging possible allergens and based on her reactions identified her triggers. She was scoped again when she had seasonal airborne issues. (it showed active damage, no where near her initial diagnoses damaged state. She was very close to being put on a feeding tube when she was first diagnosed)