High Eosinophils In Esophagus

[Joe0123]

I've been gluten free for 2 years and 3 months but for about a year and a half awhile I've been feeling worse. I had an EGD and the doc found eosinophils in my lower esophagus. I've suspected I may be intolerant to very small levels of gluten so I'm trying to completely eliminate them. Would the high eosinophils be a sign that I may still be getting glutened, that my instincts are right and I am extremely sensitive to any amount of gluten?

[mommida]

If gluten is your "trigger" for eosinophilic esophagitus, it would be a sign you are still getting gluten.

My daughter was diagnosed with EE when she was 6 years old and "probable" Celiac when she was 17 months old. I think there is a connection between the Eosinophilic gastro disorders and Celiac. Eosinophils are white blood cells that are primarily to attack parasites. The white blood cells can't differentiate and destroy healthy tissue. Depending on how high your count is you may have been diagnosed with EE. You should be tested for parasites as a simple cure. Other than that you have to find out what your "triggers" are. (food and/or airborn allergens) You should be reffered to an immunologist/allergists for further testing. (standard cases of EE will show you don't have any true allergies.)

Did these symptoms start getting worse at the end of summer early fall? (that would also be typical for EE.)

Feel free to PM me for any further questions or information from the forum.

[JonnyD]

I was diagnosed with Celiac and EE back in Feb of this year. I obviously went gluten-free right away but chose not to do anything about the EE other than monitor it.

In the fall, I had an incident where got some meat caught in my esophagus and it prompted me to investigate the EE further. First, I had food allergy testing done but I didn't react to anything. So, I reluctantly agreed to swallow Flovent twice a day for 8 weeks. That definitely worked but caused me to gain some weight as well. But, the treatment ended a couple months ago and I can now tell the EE is back. It sort of feels 'tingly' in my espophagus. I don't want to take Flovent for the rest of my life so I'm just sort of accepting it right now. Not sure what to do otherwise?

[mommida]

You probably won't be happy to hear this. An elimination diet, avoid all top 8 allergens (wheat, egg, fish, shellfish, peanuts, tree nuts, soy, and dairy all the way down to casein protein) and peas. Keep an eye on the airborn allergens. (seasonal allergies/airborn allergies play a part in EE.)

Eosinophils stay active for 12 days once activated. So you must commit to this diet for at least 2 weeks.

If you do not notice an improvement you need to remove more things from your diet. If you are feeling good, you add back a food in the simplest form. A small amount for 3 days.

Keep a very detailed journal. All food items, activities/locations, and your reactions.

Some product lines that have low allergen content are Enjoy Life, Ener-G. Found some amazing cookies that you can order online ~ LizLovely YUM.

The "wacky cake" recipe, and vegan baking recipes.

Also search "non-food" items. You'll need some extra calories from things like Dum Dum suckers. It can also help with the tingly/sore throat. 7-11 Slurpees, frozen fruit pieces (although that makes me nervous that can get stuck in your throat) Drink a full glass of water with every meal and take your time to chew really well.

That's the advice I can give you from my daughter being diagnosed 3 years ago.

[Darn210]

I just have to add my opinion that mommida is giving you some good advice. We were actually heading down the path of an EE diagnosis for my daughter when we found Celiac instead. When my daughter had her endoscopy, they were biopsying her Esophagus and took additional samples in the stomach and small intestine (in the doctor's words "since they were in the neighborhood). When we were looking at the possibility of an EE diagnosis, he said the first thing is to get the diagnosis (do you have an actual diagnosis?) and then the next step is to find the trigger. He said to hope that it's a food because it's just easier to avoid a food then an environmental factor.

You might want to do some googling on EE and educate yourself. You might also want to talk to the doctor. Mommida, correct me if I'm wrong, but isn't there some blood work that usually goes along with an EE diagnosis?

[Darn210]

. . . but isn't there some blood work that usually goes along with an EE diagnosis?

OK . . . after just a bit of googling, I don't see blood testing as part of the procedure although, I know my daughter had some labwork done (absolute eosinophils and neutrophils and some stuff like that). I did see GERD mentioned as a cause for increased eosinophils in the esophagus but it wouldn't be as high as with EE. I think you should talk to your doc.

[JonnyD]

Thanks for the advice.

I do have a diagnosis for both Celiac and EE. I'll have to look into the elimination diet and see if I can identify the culprit for the EE, if there is one. When diagnosed with both initially, I initially hoped eliminating gluten would fix everything. But, that wasn't the case.

Gluten-Free has made a hugely positive difference in my life though! The EE is more of an annoyance right now but definitely something I'll try to fix... after the holidays.

[Joe0123]

My GI doc said I had EE in April of 2009, but after this most recent EGD he's not sure. He said since I only have high eosinophils in my lower esophagus, that could be caused by either EE or GERD or something else. Reflux meds don't help so I have to assume it's food allergy/intolerance related. I recently had a food patch test that said I was highly allergic to oats, barley, and corn, things that I already avoid but I've found out that corn derivatives are in lots of things, like in an egg replacer I was using. It also said I wasn't allergic to things that give me problems and I avoid, like dairy, nuts and seeds.

[mommida]

You really get the diagnoses from the count found from the biopsy. It definately is a higher count for an adult to get diagnosed.

There was no blood testing done before my daughter's scopes when EE was evident.

It is also common for EE to "flare" up in fall. (not sure if that is a mid west specific weather pattern)

Some things have changed over the 3 years since she was diagnosed. i.e. I think they don't rely on more common in males, upper income, spacious home description of the "average" EE patientas much.

Just like avoiding gluten, you have to aware of your household cleaning products too.

Eosinophils are primarily to fight parasites, amd you should have been tested to rule out a parasitic infection.

[dilettantesteph]

I am super sensitive to oats as well as gluten, but not to corn. Even with my two sensitivities I found I did better when I eliminated processed foods. With that third one, you'd probably find you do better too. Unfortunately a lot of gluten free products use corn or oats to replace the wheat in at least some of their products, so even if they are gluten free, they may contain some oats or corn.

It wouldn't be too hard to do a diet of produce and meat for a week or so to see if it makes a difference.