This morning I went to the allergist to talk about possibly having a C1 Deficiency. Not to my surprise, he wasn’t able to say that I did or did not have it. The C1 test results were low, but not low enough for a clear diagnosis. Basically, I once again got the diagnosis of, “I’m not sure, so let’s do more tests.” This particular doctor was a real sweetheart, though. He was attentive, understanding, and was empathetic to the frustration I felt about not getting a true answer. While it isn’t his fault, it was still wonderful to have someone else to understand why not getting a diagnosis can be just as disappointing as getting one, rather than just telling me to “be happy.” He ordered me more blood tests as well as a chest X-Ray so that we could dig deeper to figure this out. After that, I’m not sure what will be done.
I feel beyond frustrated right now. I wasn’t given a clear diagnosis, so I can’t do much about my pain, but he didn’t say that I didn’t have the disease, so I can’t even breathe a sigh of relief. Schrodinger’s cat is still alive and dead at the same time. I feel like I am floating around in purgatory with a friggin cat in a cardboard box.
Onto the positive part of the day!
I live quite far from my hospital, so it’s a journey to go see my doctors. However, they’re the best doctors around here, so it is generally worth it. What makes the trip even more worth it is going to Zest Bakery. It’s about 20 miles always from the hospital, but it’s worth every stoplight to get there.
The whole place is gluten free, which is music to my ears, being the most Celiac Celiac to ever Celiac on the planet. They have pasta, pizza, an array of different sandwiches on several different kinds of bread, and my favorite, a shiny glass case of all kinds of fresh baked sweets. I don’t go often due to the fact that it’s far from home and also because it is very hard to resist not eating every single thing they make there, but when I do go, I assume heaven must feel just like this.
This time I tried to practice a little more self control and only got a few desserts for the week as well as a sandwich. The sandwich is on Foccacia bread. I know right? GLUTEN FREE FOCCACIA BREAD. It’s tasty and soft without falling apart, and deliciously seasoned. If you are a Celiac or gluten free person, you know the struggle is real. Finding something that’s both soft and stable is nearly impossible, but these guys apparently make their baked goods out of magic and unicorn tears instead of wheat to keep it all together. That has to be the secret ingredient. I’m sure of it.
Look at this handsome sandwich. I’d marry it if it was a person.
Where I live, we really don’t have a lot of gluten free places. And if a place is gluten free, I still have to worry about my allergies to other foods, so it’s even more difficult for me. Many places advertise that they have gluten free menus, but I’ve often found when talking to managers that having gluten free food and keeping it that way by not cross contaminating is not something they really think about. This presents a huge problem for me. I am so sensitive that even a microscopic crumb is enough to have me vomiting and breaking out in blisters within hours. So here, my only options really are In N Out Burger and Zest Bakery. There is also a place in my city called Gluten Free Gourmet, but I haven’t got the chance to visit them yet.
I think I have freaked out the owners of many gluten free restaurants in California, Missouri and Colorado. Eating at a restaurant is a rarity for me between Celiac and anaphylaxis. So, when I do come across a place that truly is safe for me to eat, I always make sure than I thank the owner (or manager) as well as the waiters. I want the managers, chefs and waiters to know that for people like me, who never feel safe outside of their own kitchen when it comes to dining, it is fantastic and exciting to feel safe somewhere other than home. I realize because of my personality and my anxiety, I sometimes come on a little too strong, and my excitement is off-putting to certain people. Nevertheless, I still make sure that the people in charge of handling my food know how important it is to do it right, and how thankful I am that they do. Not all of the people that work in these kind of restaurants actually have Celiac disease, so sometimes don’t fully grasp what it really is like. The average healthy person can go to a restaurant and get whatever they want without a second thought, and that really is a privilege that people like me do not have. If you or someone close to you works at a place that serves people with special diets, know that it really does mean the world to us, and we are thankful for your work and care. Even if I come off like an overly excited puppy, I hope everyone knows my thanks are always sincere.
I’m in a bit of a weird state of mind today. Days like this that bring me confusing information tend to make me hide inside my head and over think. That really doesn’t help the situation, but I suppose that’s just how I cope. By thinking and eating amazing food made by someone else other than me. (I like the second way of coping so much better).
I’m a war of head versus heart, and it’s always this way
My head is weak, my heart always speaks
Before I know what it will say
And you can’t find nothing at all
If there was nothing there all along
No you can’t find nothing at all
If there was nothing there all along