All About Eosinophilic Esophagitis (EoE)

I was diagnosed with EoE in 2007. My symptoms started with severe acid reflux and spasms in my chest when laying down. I tried taking OTC heartburn medications and nothing worked. The chest spasms scared me and caused medical induced panic attacks. I would have a spasm and then it felt like a surge of adrenaline would rush through my body. My heart rate would go sky high and I would end up in the ER thinking I was having a heart attack. After every test ran, including heart tests, my doctor and the ER just told me I was imagining things and suffered from panic disorder. However, no amount of narcotic or regular anti-anxiety medications helped me.

After 4 months, things got so bad that I couldn’t even handle talking or being around anyone without going into panic mode. Even the TV or loud sounds bothered me. My then husband took me back to the doctor and demanded something be done. It was only then that he scheduled an upper GI and they found EoE. The gastrologist came in asking if I was eating something I was allergic to. I explained that I only knew of outside allergies and lactose intolerance as an issue. I never had a food allergy before.

My PCP ordered food allergy blood test and it was found that I was allergic to shellfish. When I looked back on my symptoms and ER visit dates, they all happened after I ingested shellfish. It made total sense! I was put on Prescription Nexium, was told to swallow 2 squirts of  prescription Flonase twice a day for 6 weeks, and start Singular. I didn’t have any more problems with panic attacks and, after 6 weeks, my esophagus spasms stopped and my GERD was managed.

As the years went by, I forgot all about the EoE and stopped treatments. I was also still smoking and was dealing more with Hidradenitis and lower back issues/pain. I started drinking to deal with the pain and the depression from all the pain (yes stupid and I have stopped). Those mistakes cost me dearly. I now have Ulcers, erosion, inflammation, worsened EoE, and more. I am back on all my treatments, quit smoking,  am exercising more to lose weight, eat healthy, and don’t drink.

EoE  has only been defined in 1993 and, like Hidradenitis, more research needs to be done. There is no cure, only treatments to keep the disease in remission.

In adults, a 6 food elimination diet was tested in and found the highest allergy was wheat followed by milk. Dairy is bad for my Diverticulosis anyway. It makes sense to go on a gluten and dairy free diet for me. However, I have so many allergies and autoimmune issues, I have no idea which food is causing the most problems. The only way to tell is if I had an upper endoscopy every six weeks I added one of the 6 foods back (wheat, soy, milk, seafood, nuts, eggs). I know I can eat fish but not shellfish. I know dairy has bothered me all my life. I also know that I am having issues with Gluten. I have another upper endoscopy in 8 weeks. I am going to eliminate dairy and gluten and see if the doctor sees a difference. If removing those two items (plus nightshades that bother my Hidradenitis), taking the PPI, and doing 6 weeks of Flonase do not show a significant change, I am going to go straight AIP Diet and be done with it. That will become my life.

If you want to try the 6 food elimination diet, you can follow these instructions. 6 food diet.

If you want to go all out and follow the AIP Diet, follow this AIP Diet Foods to Avoid and Eat

All about Eosinophilic Esophagitis:

Wikipedia

mayo Clinic

American Partnership for Eosinophilic Disorders

Medical Research:

Eosinophilic esophagitis in adults: An update – NCBI – NIH

Eosinophilic esophagitis: current understanding and evolving concepts

Dietary Therapy for Eosinophilic Esophagitis – NCBI – NIH

 

 

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