So its been awhile since my last post, and I’m changing things up a little bit. Over the last year, I’ve been trying to get my eoe (eosinophilic esophagitis) under control. I have a narrow esophagus (7mm wide!) Which has always caused me to get food/pills lodged which is then followed by a trip to the er! It came to a head a few weeks ago when I went in for my first dilation. Instead of my throat stretching, it just straight up tore. I was in the hospital for a few days, healed quickly (huge blessing followed by prayer, fast, and priesthood blessing) and am much better now. However, it means I have a food allergy I have not eliminated from my diet. That’s why the lining in my esophagus tore and didn’t stretch (too many white blood cells reacting to a food allergen make the walls stiff). So, I got a trip down memory lane to the allergist. We did two skin tests (one with serums and one using the whole food) which revealed that wheat and soy are pretty big allergens for me. The problem with skin tests is they are only 75% accurate, which means there may be other foods that didn’t register that are contributing to my problem. Long story made longer, I have to go on a pretty strict elimination diet. No gluten, soy, milk, eggs, cow, chicken, turkey, legumes, gelatin (or any other animal bi products) for the next 6 weeks. I am also anaphylactic to peanuts, tree nuts, coconuts and sunflower seeds. Then I’ll have a scope/biopsy done to see if my white blood cell count has gone down (from 27 per high power field to zero). If I’m not at least below 15, they take away more food. If I am at an acceptable point, we can add one food back in every month (except gluten and soy which already showed up on tests) followed by another scope/biopsy.
Anyway, I’ve decided to start this blog back up again because you guys, this is really hard and any advice from friends or even randos on the Internet is appreciated. I also understand how lucky I am that I can at least have the food I have now. There are children and adults who have it much worse than I do with eoe and egids and are either on G-tubes or an elemental formula. I can at least have fruits, veggies, and fish. But it still feels like I’m giving up cocaine (why do I love food so much?!) I’ve had the most ridiculous break downs (I’m on week 2 of this, btw) including crying while putting away the groceries, muttering bad words while I grocery shop and read labels, and hysterically crying when I accidentally took a sip of milk and freaking out thinking it would mess up my results and lead to losing more foods (I can’t lose fish, I just can’t). Mostly it’s been a lot of crying. Over milk. Unspilled milk. Which is much more pathetic.
Luckily, I have an amazing support system! Our families have been extremely flexible with things like Sunday dinners and making accommodations (even though I’ll never be offended if the task becomes too much). My husband lets me smell his food and even allows me to stare at him while he eats things. He’s also been eating the food I make with me, which means a lot! Because fish can only be prepared so many ways, and rice gets old fast. He’s also super understanding about the crying/raging that’s been going on and hasn’t kicked me out of the house yet. Also, my allergist has been great! Seriously, premier allergy and asthma in Aurora is the best! They have been on top of things, knowledgable, and one of the nurses will send me emails about meal planning and new products and substitutions, and this is all on her free time!
I think I’ll use this page to post recipes/substitutions we’ve tried and hopefully get some feedback from the rest of the allergy afflicted community. Basically, if you have food allergies like me, or you’d like to laugh at some one like me, keep up. If not, no worries!