Eosinophilic Esophagitis and Celiac Disease

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Eosinophilic Esophagitis, also known as “EE,” is gastrointestinal disorder that, like Celiac Disease, seems to be increasing in frequency of diagnosis. I first heard of EE disease when I was in my pediatric residency.  I worked with a Pediatric GI specialist who seemed to diagnose all of his infant patients with gastroesophageal reflux (GERD) with EE. When I learned about EE I had no idea that my dear husband had the very same problem!

My husband was diagnosed with EE in 2009 after having several episodes of choking and feeling like he had food stuck in his throat. In usual wife fashion I recommended over and over again (looking back, perhaps I nagged a little bit) that he get evaluated for his swallowing problems. He finally saw a GI doc following an ED visit for a choking episode, and had an upper endoscopy with biopsy performed that showed numerous eosinophils in his esophagus.

Eosinophils are white blood cells that are usually involved in allergic reactions. Although doctors are not exactly sure what causes EE, it is believed that food allergies/intolerances play a role. Both adults and children can be affected by EE, but the symptoms are different in these two groups. In adults EE leads to symptoms of difficulty swallowing (feeling like food is stuck in the throat), chest and/or abdominal pain, and heartburn. Infants and small children who are affected may refuse to eat, develop failure to thrive, and suffer from abdominal pain and/or nausea and vomiting. Some babies who are diagnosed and treated for “reflux” by their pediatricians may actually have EE.

Most patients with EE are referred for food allergy testing. If there are food allergies, avoiding the food “triggers” often helps their EE symptoms to improve. Infants and toddlers with EE may need to be put on a hypoallergenic formula, such as Neocate, to avoid allergic triggers. Other treatments for EE include proton pump inhibitors (PPIs), which are a type of anti-reflux medication, and swallowed inhaled steroids (such as Flovent) to decrease inflammation in the esophagus.

My husband’s GI doctor tested him for Celiac Disease, as, in his experience, he has encountered many patients who have both Celiac Disease and Eosinophilic Esophagitis. Although my husband does not have Celiac Disease, he carries one of the main Celiac genes, and he has found that his EE symptoms have markedly improved since going on a gluten free diet. I find this to be very fascinating as it makes me suspect he may be gluten sensitive to some degree.

Dr. Peter Green from Columbia University, one of the nation’s leading experts in Celiac Disease research, published a study showing a clear link between Celiac Disease and EE in 2012. In his paper (see link), both children and adults with Celiac Disease are at a much higher risk of also having EE. There have been a handful of smaller studies also showing an association between the two disorders, but, like with much research related to Celiac Disease and gluten-related disorders, more work needs to be done.

For additional information I recommend the American College of Allergy, Asthma & Immunology (ACAAI) page on Eosinophilic Esophagitis.

9 thoughts on “Eosinophilic Esophagitis and Celiac Disease

  1. Amanda

    Interesting. When I originally told my doctor about my stomach issues, he thought it might be EE, due to my high eosinophil count. It was never mentioned to me again though and my eosinophil count has always been high. I always thought it was just due to my food allergies, asthma, eczema, etc. Good to hear that your husband has gotten better since going on a gluten free diet!

  2. Jess Post author

    I agree with you that it’s interesting that it was never brought up again. If you ever need to have a repeat endoscopy performed for your celiac disease, it may be worthwhile to have the GI doc biopsy the esophagus to look for eosinophils there. When things were really bad my husband did get a lot of relief from swallowing Flovent. I have a feeling in the future there will be a much clearer picture of why people get EE, I’m guessing we’re about 20 years away from having more answers!

  3. Kristine

    Wow! I had never heard of this disorder, but it makes so much sense to me. I experience the feeling of “food stuck in my throat” and difficulty swallowing quite often. It’s horribly uncomfortable, and I get scared of choking. However, as I had never heard of this (nor has anyone around me) I’ve been telling myself that it’s all in my head. I’ve also been wondering if my tonsils are swollen or if the muscles in my throat are tight enough to give me that “choking” feeling. It literally feels like food gets stuck.

    However, I am gluten free.. shouldn’t that “fix” it?

    Thanks for a brilliant blog!

    -Kristine

    1. Jess Post author

      Hi Kristine,
      It is truly a fascinating disorder and it sounds like you may have it going on.
      It is often associated with food intolerances and dairy and soy seem to be the leading culprits, so it may be possible that one of those is bothering you. In other cases, triggers for the EE cannot be found.
      My husband was allergy tested, both by blood and skin pricks, and did not have any food allergies come up, so in his case it appears to be an “intolerance” to gluten (which there is currently no way to test for outside of changing one’s diet). I do have another friend with EE and her symptoms drastically improved when she cut out dairy. Hope this helps.
      Thanks for reading! I’ll be following your blog too!
      Jess

  4. Sommer

    My 6-year-old son has biopsy confirmed Celiac and EoE . His allergist shakes her head and says, “I still can’t believe he has both…” She believes they’re unrelated. The cruel irony is that the only grain he doesn’t show positive for in allergy testing is wheat!

    I linked to that study out of Columbia University and I’m very interested to read more. If you have any additional links handy, please share! It does seem intuitive to me that two food related auto-immune disorders would somehow be connected. Anyway, thank you for this.. it’s honestly the first I’ve read of anyone suggesting a link and my wheels are turning…

    1. Jess Post author

      Hi Sommer,
      Thanks for sharing your experience with your son having both Celiac Disease and EoE. If I do come across any more articles linking the two disorders, I will reply and share the links for you. I feel that food intolerances, in general, are grossly under-researched. It is great that your son has been diagnosed so early. Do you know which foods trigger his EoE? It seems like dairy is a common culprit but I have also met people who have symptoms triggered by soy and tree nuts.
      Thanks for reading too!
      Jess

      1. Vivian Magruder

        Just spent 12 hours in the emergency room with my 15 1/2 year old teenage son. He has had difficulty swallowing his food at times throughout this life. And vomited on many occasions. He always has to have a glass of water while he eats. He ate a plate of potatoes before he ate the piece of chicken breast that became stuck in his esophagus. He spit for 22 hours before it was removed through an endoscopy. He has eaten plenty of wheat and dairy in his life but it seems to have been affecting his health more of late. I have been putting cheese crackers filled with peanut butter in his lunch as well. He was raised on almond butter not peanut butter. Also a certain cliff bar that I see has peanuts as well as soy. We recently moved across the country after a divorce so there has been a lot of emotional upheaval settling into a new world as a sophomore in high school. We owned a health food store for 12 years (most of his life) and named it after him. I always thought his eating issues were because we owned this food store. An abundance of food and lots of focus on diet and nutrition. He has never really been a big eater. I have always tried to “get” him to eat. Even as a teenager he rarely chows down like other guys I have fed. He is very tall and very thin. I am so grateful for this ER visit as we will have the opportunity to really help him now. We await the biopsy results this week. And yes he was born caesarean.

        1. Jess Post author

          Hi Vivian,
          Thank you for sharing your son’s story. I am sorry about all of your current stresses and hope that that his endoscopy goes well. Like celiac disease, EoE is on the rise (it’s a bit unclear why, but possibly related to imbalance of the microbiome). I hope to write an updated post about EoE soon. I wish you the best, it sounds like you are doing everything that you need to be doing for your son and like you are a great mom.
          Jess

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