It's National Eosinophil Awareness Week. I thought I'd take this opportunity to remind you exactly what Eosinophilic Gastrointestinal Diseases (EGIDs) are and why you need to be aware of them. If your brain is taking a break (I get it, I do that too...a lot), then skip down to the bold numbered section at the bottom. If you're feeling up for a bit of education, read the whole thing.
Official information can be found here. This post is a compilation of what I know about the subject.
Eosinophils are a specific type of white blood cell, found in the blood and/or in the gastrointestinal system. Everyone has them. They are helpful in fighting off infections. There is a "normal" number of eosniophils in every person's digestive tract, but when that number becomes elevated then it causes damage and symptoms of EGIDs. It is considered an autoimmune disease, since the body attacks itself.
What an eosinophil looks like. source
The eosinophils come as a reaction to the food protein (the building block to the food, not the nutritional quality known to be found in meat and legumes), and sometimes as a reaction to the environment (in the case of eosinophilic esophagitis, where particles from the environment can be breathed in and effect the esophagus). Every individual's reactions are different. Some people react to one food, some to 20. Some people react to all foods, some to all but a small handful. Some even react to foods in their raw state, but can tolerate them when cooked, since cooking foods breaks down the proteins and makes them easier to digest. The trick is to figure out which foods are ok and which ones cause a reaction. Food trials can be quite a process! Some people are so sensitive to a food that if it is cooked indoors and they are in a nearby room, the food particles can enter their body and cause a reaction. Some people can tolerate a food as long as it is eaten in small portions and not very often. Some people react to being in an older house with mildew in the sink drains. When trialing foods, these are important factors to consider. Many people have to use an amino acid based formula (which is hypoallergenic) to supplement their diet and get enough nutrients. The formulas don't taste very good, so many children need feeding tubes in order to get enough formula to stay healthy.
This is about 2 month's worth of formula for Caleb. Thank goodness for lots of cupboard space, and thank goodness for good health insurance! If anyone breaks into our house, I'm tellin' ya, this is where the goods are!
The only way to diagnose and track the treatment of EGIDs is to take a biopsy of the effected area. The person is put under general anesthesia for an upper endoscopy and/or a colonoscopy, depending on where the symptoms are taking place. After the biopsies are obtained, the lab counts how many eosinophils can be seen under a high powered field. If it is higher than the cutoff, then a diagnosis is made. After a diagnosis, diet modifications are made to try to control symptoms. Once the eosinophils are controlled via diet and it is confirmed via biopsies, foods can be trialed. Most people need a scope after one to five foods is reintroduced. Foods are added and taken away according to scope results and symptoms. It's not abnormal to have ten scopes in the first few years after a diagnosis is made.
Of all of the EGIDs, eosinophilic esophagitis (EoE) is the most common. EGE (eosinophilic gastroenteritis--in the stomach and duodenum) is the second most common while EC (eosinophilic colitis) is third. You can have eosinophils in any combinations of those areas--esophagus and stomach, esophagus and colon, stomach and colon, etc. Caleb is the only person I've found who has eosinophils in his duodenum only. Russell was borderline for EC when he had a sigmoidoscopy (which is like a mini colonoscopy). If he has more symptoms in the future that interfere with his health and quality of life, he will have a colonoscopy. Leave it to my kids to be rare. ;)
Symptoms of an EGID vary from person to person. EoE in an adult typically manifests itself as the feeling of food getting stuck in your throat. In children, EoE looks like reflux with lots of vomiting, colic, and poor sleep. EGE typically shows lots of stomach pain and diarrhea. EC is accompanied by diarrhea or constipation and abdominal pain. In young children, failure to thrive is common, although there are exceptions.
Why do you need to know about eosinophilic gastrointestinal diseases? There are many reasons.
- It's important to think twice before sharing food with someone else's child. The other day, a child on the playground offered Caleb a Capri Sun. I overheard him say, "My mommy says I can't have that." I was so proud of him! He also asks me what ingredients are in a food before asking for a piece of my food. It's a huge relief to me to know that he is able to think about what he eats and how it will effect him before eating something. But when we started out on this journey, he would have eaten a cheerio left on the floor at church, and it's hard to know if one little cheerio would have altered the results of a scope. For some children, one cheerio would be followed by severe pain and vomiting. With his best interest in mind, we absolutely cannot let him eat something that isn't on his "safe" list. So keep that in mind before you let your toddler share his snack with another toddler.
- EGIDs are becoming more and more prevalent in the recent few years, although there are still many people walking among us who have the symptoms and don't know what's causing them. If your daily pain could be taken away with a few diet modifications, wouldn't you want to know? Caleb's diagnosis came almost two years ago, and in that time I have met two people who knew someone else with an EGID, and one person who I was casually talking to who said, "Oh, yeah, I have EoE." Um, WEIRD! That just happened a few weeks ago. All this time I have felt like I'm living on an island, with no one around me who knows what it's like to check labels obsessively and pack food for your child everywhere you go because you can't just stop for a snack at the nearest drive-through. I've met lots of people through online support groups, and even a local support group, but it's just not the same as knowing someone. Recently, though, a friend of mine from college had a son who was diagnosed with EoE. I try to imagine what it was like for her to have been slightly familiar with that awful word...eosinophil...before having the label slapped on her own son. I'm guessing it made it a bit more scary, because it's clear that the road we're on isn't the scenic route, but it also had to feel comforting to know that she's not alone. Wouldn't it be nice if everyone could feel that way? This has been a lonely, lonely path for me, and although I'd love it if no more friends or family ever had to be diagnosed with an EGID, if they did happen to be in this boat then I'd be glad to tell them that they're not alone.
- We all want a cure. At the very least, I really want a way to take biopsies without having to put Caleb under anesthesia every time. If Caleb passes his next scope and is clear to keep eating everything but the top 8 most common allergens, then we will be ready to trial those top 8. We already know that he reacts to dairy and soy, but when we trial wheat, eggs, fish, shellfish, peanuts, and tree nuts, we will have to scope after each and every food. That's a minimum of seven more scopes in the next few years. That's hard on a little body. That's emotionally hard on him and his poor mother! My top priority has always been his health, and my second highest priority is his quality of life. But the best way of managing his disease is to decrease his quality of life by extreme measures. And it's something that will follow him for the rest of his life. You would want a cure, too. So, if you can, please consider donating to CURED, the Campaign Urging Research for Eosinophilic Disease. It's a great way to spend a few extra bucks. ;)
Thanks for sticking with me through this lengthy post, and through this lengthy journey. It really does mean a lot to me to think of all of the people who care about my sweet Caleb.