Eosinophilic Esophagitis

[JonnyD]

I have Celiac as well as Eosinophilic Esophigitis (EE). I went gluten free immediately after I had positive bloodwork for celiac. I've had an overall positive response to being gluten free.

The EE, on the other hand, has gotten much worse since I overhauled my diet. I've been reading a lot on this and allergies. From my understanding, if you can eliminate the allergen from your diet then the EE should resolve. I suspect that I'm allergic to rice, which would explain how my EE's been worse since going gluten-free as rice-based products have replaced wheat-based products in my diet. I'm hopeful avoiding rice will work for me but I have a feeling that this will be a long process.

Has anyone else with EE successfully identified the allergen and had their problems resolve? Thanks.

[Chalula88]

Hi jdrexler,

My sister was just diagnosed with EE and identifying the trigger is probably going to be a long process. If you haven't already, you want to find a specialist who will do scopes every three months to check for worsening/improving symptoms. The only way to really find out what the cause is, is to go off something for three months, get scoped, and see if the EE is improved. You can also do it the other way around and get allergy testing and eliminate all foods you test as allergic to, then add them back in one every three months. I don't necessarily recommend that, because the testing isn't accurate enough and you'll end up (like my sister) with nothing to eat. Right now her doctor has her off: gluten, corn, rice, all nuts, all fruits, lettuce, carrots, peas.

I don't necessarily trust that her doctor (even the so called specialist) know much about what they're talking about. A little research online revealed that milk is by far the most common trigger of EE. She tested allergic to milk, but the doctor said it was no big deal and to keep drinking it! So we decided to have her go dairy free and she has finally started to improve. So I would recommend starting with milk.

You can also start with eliminating all major allergens (gluten, dairy, peanuts, tree nuts, soy, shellfish)and adding them back in, but that's a major undertaking.

If you find what is triggering it and stop eating it, you will get better.

Hope this helps!

[mommida]

You should at least start with allergy testing. EE cases usually do not have postive *allergy* tests. It is a start, and if you do have other true *allergies* you can eliminate those triggers from your overall well-being.

As for the elimination diet, you start by eliminating all the usual suspects. That is the top 8, peas, and anything you are personally suspecting. It is difficult. You can do it though.

I ran through it with my daughter when she was diagnosed 3 years ago. All *allergy* tests were negative. The elimination diet took about 2 years, because it was very hard for me to take the chance of adding back the allergens. I just had a hard time seeing her sick. I forgot at what point (on the restricted diet)an additional scope was done to see 100% normal results. She is gluten free for the Celiac and eggs, fish, shellfish, and peas are the identified triggers for her. We have also noticed a seasonal airborn trigger. (Most likely ragweed.)

Keep a food/weather allergen alert journal. Remember eosinophils once activated, are active for up to 12 days.

Always try to stay positive and think of what you CAN have. Search for non-food items (cotton candy, dum-dum suckers) and low reactive foods. Popsicles, Slurpees can be very soothing. I have also tried the honey theory. Honey is not supposed to cause reactions, calm inflammation, and the claim of possible helping make a person immune to local airborn allergens. (I'm probably not explaining it well, but at the point of being able to ADD something to the diet was nice. So here goes the explation of the theory... Bees process the local plants pollinating and making honey. Honey does not seem to cause human reaction. The person has a teaspoonfull of local honey a day for at least 3 months. Therefore the person may have exposure without having a reaction and may be able to build up a tolerance for the sensitivity.)

Watch out for constipation!

[Chalula88]

I'm doing the honey thing right now, but my sister was advised to avoid honey for now. Just a note about it, make sure you buy local honey. If you don't, you won't build up immunity to local environmental allergies. Also, some foreign honeys have been found to be substantially corn syrup and not labeled as such. Your best bet is to buy it at a farmer's market or a specialty store where the label says it's local.

[JonnyD]

You should at least start with allergy testing. EE cases usually do not have postive *allergy* tests. It is a start, and if you do have other true *allergies* you can eliminate those triggers from your overall well-being.

As for the elimination diet, you start by eliminating all the usual suspects. That is the top 8, peas, and anything you are personally suspecting. It is difficult. You can do it though.

I ran through it with my daughter when she was diagnosed 3 years ago. All *allergy* tests were negative. The elimination diet took about 2 years, because it was very hard for me to take the chance of adding back the allergens. I just had a hard time seeing her sick. I forgot at what point (on the restricted diet)an additional scope was done to see 100% normal results. She is gluten free for the Celiac and eggs, fish, shellfish, and peas are the identified triggers for her. We have also noticed a seasonal airborn trigger. (Most likely ragweed.)

Keep a food/weather allergen alert journal. Remember eosinophils once activated, are active for up to 12 days.

Always try to stay positive and think of what you CAN have. Search for non-food items (cotton candy, dum-dum suckers) and low reactive foods. Popsicles, Slurpees can be very soothing. I have also tried the honey theory. Honey is not supposed to cause reactions, calm inflammation, and the claim of possible helping make a person immune to local airborn allergens. (I'm probably not explaining it well, but at the point of being able to ADD something to the diet was nice. So here goes the explation of the theory... Bees process the local plants pollinating and making honey. Honey does not seem to cause human reaction. The person has a teaspoonfull of local honey a day for at least 3 months. Therefore the person may have exposure without having a reaction and may be able to build up a tolerance for the sensitivity.)

Watch out for constipation!

Thanks. I'm going to have to do the Elimination diet. My food allery tests also came back negative across the board but I've been still having problems.

How did you undertake the elimination diet for your daughter? What foods did you start with and how did you re-introduce other foods? I've seen conflicting information on how to follow this.

Thanks.

Jonny

[mommida]

There was no medical advice from a nutritionist to be had. We were given some Splash. Splash is a child version of an amino acid based formula to help with nutritional requirments. It tasted terrible and had artificial sweeteners. LOL

We eliminated all top 8, peas, and of coarse gluten free. So basically fruits, vegetables, and meat. Everything went well and she was scoped and it showed 100% HEALED!

Adding things back in was scarey. Allergen food in its purest form, about a tablespoons worth, for 3 days in a row (if there is no reaction). Always recording everything in a journal.

Some of the foods brands and products that helped...

enjoy life

ener-g

cherrybrook farms

salads (oil and vinegar dressing) (always my daughter's go to food when things are flaring up. cool lettuce leaves seem to help her.

there were some mixes called "the craving place" all were really good tasting and easy to make

Namaste (didn't like a lot of these, but when you are hungry )

found www.lizlovely.com some are gluten free, vegan, soy free (sorry I can't recall your suspect list of foods)

Some vegan recipes can be really helpful too.

There were some powder mixes for dairy replacements. ?better than dairy, vance's dari-free? (i think)

we can help you find many things, there is a lot of collective experience here on the forum!

Good luck!

[JonnyD]

Posting a follow-up on this.  I haven't been on the site for a while.

 

I recently went dairy free (in addition to gluten free for celiac) and had an almost immediate positive response in my EoE symptoms.  My doctor gave me a recent study on EoE and the two leading allergens by far were identified as wheat and dairy.  I'd been suspicious of other allegens (rice) but don't think I was on the right track as my approach was not a deliberate elimination diet.  It was probably more correlation than causation as the butter/cheese were probably the real problems when I had rice.  I also initially consumed a lot of dairy products when I initially went gluten free which could explain my sudden increase in EoE issues.  For now, I'll be staying dairy free and gluten free until early december when I get scoped. 

 

For those looking for tips on EoE, I'd suggest starting with eliminating wheat and dairy first.  Of course, you can have multiple allergens but these two categories seem to account for a large majority of the cases.