EE • EOS
What is EOS?? EOS stands for Eosinophilic disorders. Eosinophils are white blood cells that actually start out in the bone marrow and then migrate over time. Eosinophils protect the body in fighting against bacteria and parasites. But too many of them congregating in one place is a problem. This can happen in the intestines and is known as Eosinophilic Gastrointeritis. They can also gather in groups in the esophagus and this is known as Eosinophilic Esophagitis.
My two younger children Tobin (6) and Lilly (2 1/2) have Eosinophilic Esophagitis. This means that their collection of eosinophils in their esophagus are always on the attack. Unfortunately, the esophagus cannot withstand a constant onslaught of attacking eosinophils so the result is tissue damage, inflammation, an increase of irritation and mucosa in the esophageal lining. Not to mention the long list of symptoms that are felt and seen on the outside such as nausea, vomiting, reflux that does not respond to usual therapy (medicines which stop acid production in the stomach), dysphagia (difficulty swallowing), food impactions (food gets stuck in the esophagus), failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite, abdominal or chest pain, feeding refusal/intolerance or poor appetite, difficulty sleeping.
How were they diagnosed? EE can only be diagnosed through endoscopic surgery with biopsies. The patient is put to sleep, a tube with a camera is sent down the throat, pictures are taken of the esophagus, stomach, and intestines as well as tissue samples. The tissue samples are looked at and eosinophils are counted. All of this is done after we’ve seen lots of symptoms. You can read more about Tobin’s story here and more about Lilly’s story here. Each story is similar but also very different.
How does EE impact us? Food is often a trigger so it has completely changed the way we eat. They (and we all do for the most part) avoid: wheat, oats, barley, rye (all gluten), eggs, peanuts, ALL tree nuts, fish and shell fish. We have also avoided dairy for a time. And Tobin has recently been able to be reintroduced to wheat. He has done well with that reintroduction. You can read more about how we eat here. We feel very blessed to even actually have safe foods for them. Many children suffering with EOS disorders have no foods that are safe for them to eat and so they are fed through feeding tubes in their tummies. Dealing with food allergies and sensitivities is tough. Especially in a society that revolves around food…..birthday parties, school parties, church functions, traveling. Every time you put a bite of food in your mouth, you don’t have to worry about what it’s doing to your body….outside of your waistline. 😉 But Tobin and Lilly do. They each handle it very differently. Tobin, although he gets embarrassed and feels left out when everyone else is having a cupcake from a classmate’s mom and he gets an alternative, he handles it very well overall. We home school so that helps some but we do MANY outside of the home activities that involve a “class room” type setting and we have many church and family funtions. Lilly, on the other hand, wants to eat exactly what you are eating and NOW!! 😉 She’s two and thinks the whole world belongs to her. Not only are foods a danger, but so are environmental allergies that are inhaled….such as dust mites, pollen, animal dander etc. All of these things are not only inhaled, but some particles go down the esophagus as well.
At this point there is no cure for EOS disorders but the symptoms can be managed with prescription medications (which they each take several of). We also take several trips a year to Childrens Hospital in Birmingham, Alabama as well as to see their allergist in Huntsville, Alabama. Below is a short 3 minute video of their lives with EOS in pictures.
I hope you are able to benefit from the allergy-free recipes that I post. We’ve been eating this way for over 5 years now so it’s pretty much second nature. If you don’t eat “allergy free” I’m sure you know someone who does. If you don’t, I hope you are inspired by our efforts to be joyful and content living without certain things. It CAN be done!