Caleb has a diagnosis! The biopsy from the scope came back positive for Eosinophilic Gastroenteritis (EGE). That's a mouthful. But it's a belly empty for Caleb!
The GI doctor actually told me that Caleb's diagnosis was "Allergic Enteritis," but after a tiny bit of research, I found that that's not actually a real diagnosis. The real name for it is Eosinophilic Gastroenteritis.
A few of the basics
EGE is a reaction to food in the digestive system. Caleb's happens to be in the small bowel. It's most commonly found in the esophagus. The body produces eosinophils, a specific type of white blood cells, as a reaction to certain foods. It's an autoimmune response.
It is extremely painful. The GI doc said to imagine if Caleb had eczema on his skin and every time we fed him we poured acid on it. Ouch. It's a miracle that Caleb hasn't been crying and crabby for every second of every day of his life!
Abdominal pain is the main symptom of EG, but other symptoms include nausea, vomiting, weight loss, and malnutrition (sometimes EG can make it hard for your body to absorb nutrients). Sound like someone you know? ;)
The reaction is similar to allergies. It appears that the most common EGE food reactions are gluten and dairy. Even though the enzymes in the biopsy showed that Caleb is able to digest gluten and dairy--i.e., he doesn't have Celiac Disease or lactose intolerance--he still could have reactions to those foods. It is possible that Caleb has different or more reactions. It's also possible that Caleb reacts to literally all foods. Yep.
The only way to diagnose EGE is by doing a biopsy of the effected area. The biopsy will show an eosinophil count above 20; Caleb's count was over 40.
It is very rare. No one would have ever guessed that Caleb had it if we hadn't tested for absolutely every possible problem with the biopsies. But now that we know that he has it, it makes perfect sense! When he was about 6 months old, he would get excited when he saw the bottle, and he would act very hungry. After taking a few sucks, he would refuse to drink any more. I knew that he had to be in pain, and that he'd rather feel hunger pains than digestive pains. And yet he never cried!
The first line of treatment for Caleb is to use prednisone (a steroid that weakens his immune system, since allergies are an overreaction of the immune system). He will be on that for 1-2 months, depending on how well it works. While he is on it, we will be keeping him home from Church and trying to keep from exposing him to germs anywhere else, too. I'm glad it's not sick season any more, but still. This child has a weak enough immune system as it is.
If he regresses after discontinuing the prednisone, we will have to consult with an allergist to figure out what allergies are causing the pain. The problem with allergy testing in a child under the age of 3 is that the results will show a lot of false positives and false negatives. So we'll probably have to do the "elimination diet," and start by giving him a hypoallergenic toddler formula, and slowly re-introduce one food at a time and see how he reacts. The problem with this is a) in a child who already doesn't eat enough, it is very hard to take away the foods that he is willing to eat; b) we'll have to be VERY particular about what he does and doesn't eat--no more snack time in nursery at Church, no more sharing our food with him, etc; and c) the only way to tell that he's in pain is when he doesn't eat! Most babies/toddlers will get cranky if something upsets their tummy, but not my little angel! So it'll be hard to tell what foods he is having a bad reaction to.
Having EGE has nothing whatsoever to do with being premature. It's hereditary, which is a little scary. I don't know if I could handle more than one kid with this problem! It's not a fun one to deal with!
Since starting the prednisone four days ago, Caleb:
- Is ridiculously happy--always laughing, bouncing around, and smiling.
- Is EATING FOOD WILLINGLY!! I was worried that his aversion to food had become a learned behavior after all this time, meaning that even if the pain goes away, his brain has a hard time not believing that food is a bad thing, because it's so ingrained in him. (That's where his bi-monthly feeding therapy comes into play.) But, apparently he still wants to eat, which is amazing!
- Is finally, for the first time in his life, hydrated enough to cry more than one tear at a time!
- Already has a runny nose. :/
We are SO happy that we FINALLY know what's going on inside our little guy! It's a huge relief. But it's also hugely scary. This diagnosis will almost certainly haunt him for his entire life, dictating what he eats and how he feels. The poor child has already experienced enough pain! It's hard for a mother to watch, especially when there's not a lot that I can do. However, we are very fortunate to have many caring and knowledgeable doctors and therapists on our side. And a lot of faith and hope on our sides, too. We've been through a lot with our little Cal. It's almost like we were prepared for this. We know it'll be ok. Until then, we have a lot of blessings to count!