Anyone Else With Eosinophilic Esophagitis?

[JonnyD]

Hi,

I had a biopsy recently and discovered that I have Eosinophilic Esophagitis (EE). It's also called schatzki rings. My doc says it's due to an allergy.

Did anyone else discover they also have EE when they got biopsied? It's an allergic response and I'm not sure if it's just from the gluten or if there's another food that I'm allergic too.

Any input is appreciated.

Thanks,

Jonny

[jebby]

Hi Jonny,

My husband has eosinophilic esophagitis (EE). He does not have celiac, but he was diagnosed 2 years ago via endoscopy because he had progessively worse problems with swallowing and getting food stuck in his throat. I do not have EE, but I have celiac, and we share a GI doc. Our GI physician has noticed that a lot of his celiac patients have EE and vice versa.

I am a physician and have done a lot of reading about EE in the medical journals. It is a relatively newly recognized disease, it was not in the medical textbooks when I was in med school ten years ago. It is most commonly associated with an allergy to dairy. A lot of people who are diagnosed with EE during adulthood have either a history of a milk allergy during childhood which they supposedly "outgrew" or have had a tendency to avoid drinking milk. I have not come across any research linking EE to a gluten allergy or intolerance.

EE runs in families and is being diagnosed more often infants than adults. Infants with EE often have terrible reflux leading to colic and other symptoms and end up needing to be put on non-milk based formula.

Has your MD suggested that you get allergy tested? My husband refused to, but it may be helpful to find out your dietary triggers for the inflammation.

Hope this helps. Please let me know if you have more questions.

Jess

[JonnyD]

Hi Jonny,

My husband has eosinophilic esophagitis (EE). He does not have celiac, but he was diagnosed 2 years ago via endoscopy because he had progessively worse problems with swallowing and getting food stuck in his throat. I do not have EE, but I have celiac, and we share a GI doc. Our GI physician has noticed that a lot of his celiac patients have EE and vice versa.

I am a physician and have done a lot of reading about EE in the medical journals. It is a relatively newly recognized disease, it was not in the medical textbooks when I was in med school ten years ago. It is most commonly associated with an allergy to dairy. A lot of people who are diagnosed with EE during adulthood have either a history of a milk allergy during childhood which they supposedly "outgrew" or have had a tendency to avoid drinking milk. I have not come across any research linking EE to a gluten allergy or intolerance.

EE runs in families and is being diagnosed more often infants than adults. Infants with EE often have terrible reflux leading to colic and other symptoms and end up needing to be put on non-milk based formula.

Has your MD suggested that you get allergy tested? My husband refused to, but it may be helpful to find out your dietary triggers for the inflammation.

Hope this helps. Please let me know if you have more questions.

Jess

First off, thanks for your insights!

Yes, allergy testing was recommended. Like your husband, I occasionally get food stuck and only agreed to a biopsy because I was to have my esophagus dilated at the same time. My positive blood testing (with family history - brother and aunt with celiac) was enough to convince me of the celiac. Of course, the dilation didn't happen when he saw EE.

Also, I was given a second option of taking Flovent (steroid inhailer) and swallowing it instead of breathing. Twice a day for 8 weeks to reduce the inflamation. I passed on that option as it seemed like a likely short term fix.

I've also read that other food allergies are common with celiac so I wouldn't be surprised to be allergic to something else. That's interesting that it's most commonly associated with dairy. Even before your post, I've contemplated giving up dairy as well.

My problems with getting food stuck are pretty infrequent so it's not an urgent matter. I will probably follow up with an allergist at some point. Just not sure if it's better to see an allergist or just eliminate dairy and see how it goes. It's not like I can scope myself to see how it's going. I was told it can take up to 8 weeks for the swelling to clear up. Is that right?

[mommida]

My daughter has both Celiac and EE. Celiac diagnosed at 17 months and EE diagnosed when she 6 years old.

The Flovent should help you heal, but could give you a yeast infection.

My daughter was allergy tested and is not allergic to anything she was tested for. (the control did flare up so testing was supposedly done correctly)

We had to do an elimination diet to figure out what "food triggers" she needed to avoid. She was gluten free for the majority of her life by that point and was really put off by avoiding all "top 8" and peas. I was a nervous wreck when it was time to reintroduce an allergen back. Remember that once an Eosinophil is activited it stays active for 12 days with no further stimulus.

In the past 2 years we have noticed there is a seasonal air born allergen that is playing a part in her EE. Late summer/ fall makes her very ill.

She avoids gluten, eggs, fish, shellfish, and peas. It took about a year to go through the elimination diet, because I could never think of an appropriate time to take the chance of making her sick.

[beebs]

I know this is an old topic, but i have both EoE and Celiac as well. No food allergies at all though, my specialists (who are doing clinical trials with EoE) also say they see a lot of people that don't have allergies, but that it may also be caused by intolerances.The weird thing is one of my main triggers for EoE is gluten/wheat. 

[ktyler44]

I am so glad to find your post, beebs. I am being tested for celiac, but more and more I am beginning to think it is EE instead. I will be having an endoscopy done on Feb. 13. I hope to get some answers then. I had allergy testing done and was not allergic to anything, but I seem to be sensitive to wheat/gluten. Not sure about dairy. I have always loved milk, but I haven't been drinking it very often lately. I do seem to react to wheat, though.

[michelepta]

My husband has EoE and Celiacs.  He actually was diagnosed with Chrons too this summer through a camera.  All his Celiac antibodies were extremely low after being on the diet for three years, but he was anemic.

 

He takes the inhaler once a day for the EoE.  He had allergy testing done and tested negative for any food allergy.  Since it seems worse at certain times of the year, it is assumed that it is his environmental allergies.  He tested positive for about 16 of those.  He is about seven months into allergy shots and has noticed some improvement-although Sunday he had something get stuck and had to throw up.  January has always been his bad month.

 

His first biopsy is when he was diagnosed.  The Doctor was shocked to discover how bad it was scared.  He said, "You didn't tell me you had problems swallowing."  My husband said, "Well they told me when I was a kid that some people need to chew more and throwing up once a week is normal." I've been telling him that for 24 years.   

[michelepta]

I need to correct the previous post.  I have been telling him it is not normal to throw up and have food get stuck.

[JazzyJake]

Interestingly,  I was diagnosed with EE a couple years ago, via endoscopy, but the gastroenterologist did not check for celiac at the time. 

 

Recently my neurologist diagnosed celiac while searching for a cause of peripheral neuropathy.  Celiac was confirmed by biopsy a couple weeks ago.

 

There could very well be a connection.