Your baby is born. You count ten fingers and ten toes. Everything’s perfect.  Your baby “seems” healthy. When my daughter Samantha was born in 1997, she was a perfect pink bundle of joy. I assumed she was as healthy as her older brother, Carmen. As the months and years went by, her health became an issue. She vomited constantly, suffered from severe reflux, stomach pain, and diarrhea.  At the age of 10, after years of being misdiagnosed, she was diagnosed with Eosinophilic Esophagitis.

Eosinophilic Esophagitis (EoE) is a rare white blood cell disease. It is characterized by elevated eosinophils in the esophagus. It is an auto-immune disease that causes the body to think food is a parasite and attacks itself. It causes the body to be allergic to many or all foods. This disease affects both children and adults. There is no cure.

Symptoms include vomiting, severe stomach pain, diarrhea, reflux that doesn’t respond to medicine, food impaction, difficulty swallowing, joint pain, throat clearing, chest pain, difficulty sleeping.

When Samantha was diagnosed, it was very scary. Suddenly, everything became a struggle. It takes a huge toll on the child and family. Family dinners, holidays and parties became stressful or non-existent. Samantha was put on rounds of steroids that seemed to mask her symptoms but did not take away the EoE cell counts. She has to undergo countless endoscopies, colonoscopies, blood tests, ultrasounds, MRI’s, allergy tests, etc. Doctor visits became the norm.

It often causes friction with family and friends who simply do not understand the severity of the disease. People will often comment on how well she looks. They do not realize that even though she is beautiful on the outside, her insides are being destroyed by the very thing she needs to survive. Food.

When Samantha was 12, her doctor decided that we should try the top 6 food elimination diet (milk, eggs, wheat, soy, nuts and seafood). We also eliminated corn and beef. Grocery shopping became a nightmare. Every label had to be read. This helped her cell count somewhat but EoE symptoms persisted.

At age 13, in January 2011, we made one of the hardest decisions ever. Samantha and I sat down with her doctor and discussed how to get her better, lower her cell counts and figure out which food(s) were causing the EoE. That month, she went through major surgery and had a G tube (gastronomy tube) placed in her stomach. My child would lose ALL food and would be fed strictly through the feeding tube a special hypo-allergenic formula. We would wipe the slate clean and start over from scratch, reintroducing one food at a time. Food trials have been stressful, painful and discouraging. Right now, all Samantha eats is white potato and her formula feeds.

School is a big hurdle for EoE kids. Samantha attends school in Cape Coral with her special backpack that contains her formula and feeding pump. Countless days of school are missed. She is enrolled in home-bound programs as well.

Ironically, Samantha loves to cook and bake and exceeds in her culinary class at school. Through all the pain and suffering, Samantha remains a strong, brave kid with a great attitude. In the meantime, we continue to pray for a cure.

That’s all we can do.

Susan Santora McArthur
Samantha’s Mom
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8 thoughts on “Allergic To Eating Food – Samantha Lives With Rare White Blood Cell Disease Called Eosinophilic Esophagitish”

  1. kyle says:

    This was as if you wrote story of our 9 year old son. He has eoe and allergies it is a hurdle many do not understand. I wish you and your family the best.

  2. Richard Cooke says:

    Hi I am 46 years old & have suffered with this since 1996 but was only diagnosed March 2016 but it did explain a whole load of things to me

  3. Jessica Gardner says:

    It is almost the same thing for me. I was diagnosed when I was 10 and went through many endoscopy

  4. Ben says:

    I was born in 1998 and have the same disease. I have lived on a E028 formula called neocate since I was 3 years old. I would love to meet you! Is there any way I could contact you?

  5. Christopher Larson says:

    Xolair. Not approved for EoE, but went on it in 2008. I had over 125 count of eosinophils in a field on biopsy in 2007. Two months on Xolair, 0 (zero) count on biopsy. I have moderate allergic asthma, so that is how I was prescribed Xolair. One caveat, Xolair only works on 1/3 of patients with EoE. Fasenra and Nulasta also offer hope.

  6. Anna says:

    My 23 yr old son was just diagnosed with EoE. Years of misdiagnosed allergies and asthma and GERD. Born with unbelievable reflux and seemed to grow out of it but secretly it ate away inside. Chronic cough for years told it was due to asthma. So we dealt with it until food became impacted and had to be surgically removed. He’s had his esophagus stretched as well. The GI doc is determining a link to kids born during this time frame. Esp via C section and with use of forceps. We are desperate to find something that works. He is a graduate student studying chiropractic care and literally does not have time to stop eating foods (some or all). As a mom my heart breaks for him and also for all those I read here today. Please share any recommendations. Thank you

  7. Lexi says:

    This post is highly inaccurate. EoE is an immune-mediated disease, not an autoimmune disease. There is a huge difference between an inflammatory condition and a condition where the body destroys ones own cells. It’s also not a rare white blood cell disease–that would be a bone marrow problem or a type of leukemia. Rare, allergic disorder, devastating, immune-mediated condition is correct, yes. However everything else you’re saying is going to further the confusion on the disease. While still a possibility, it is NOT proven to be genetic at all. While I’m sure the story is very real, and the treatment is correct….making it seem like a cancer is just plain wrong. I’ve had this and have it very severely as well. I’m now 29 and was diagnosed over 10 yrs ago in the Cincinnati, OH (worlds leading research). I am just now going on the elemental diet. I wish I had parents like you to help! I’m sure doing it when your young is much better. You ought to look in to EDS-hypermobility if she continues with joint pains as it can be related. Also, you might want to fix the typo in the title. I do wish you the best, I know it’s not easy!!!

  8. Nancy says:

    My 24 year old daughter was diagnosed with this at Duke Children’s Hospital when she was a tween after years of mysterious choking episodes and bad asthma. We were told this is chronic and for the rest of her life she has to swallow Flovent (steroid) asthma spray and take prilosec. All these drugs my poor daughter has taken for years really worries me.
    I do want to note though in response to an above poster, she was not a c section birth. Her birth was an easy one. Her father suffers from reflux but my theory was that she was in contact with black mold that was in our Hvac system unbeknownst to us when she was young. (Just a mom’s intuition theory.)

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