Thursday, November 28, 2013

Thanksgiving, Food, and Not Feeling Like A Huge Jerk

It's weird - I spent 20 years dealing with serious illness, only to learn that it was caused by gluten all along. Even though I have access to care, I don't trust the healthcare providers I have access to to have gotten the testing done promptly enough to distinguish between non-celiac and celiac gluten sensitivity, as I've likely mentioned. Also unfortunately for the timing of the realization, I couldn't yet be foolish and order lab work on myself (board certification as an NP is still a year and a half or so away). And it's not worth being seriously ill for a couple of months to determine something that will have the same outcome.

I bring up this detail again just because not having a lab test makes me feel like a huge jerk when I have to turn down things, even though, ultimately, the test is "does gluten exposure make you sick after long-term avoidance?"

Thanksgiving is frustrating in that it revolves around food. As an ex-vegan, I'm used to this level of frustration, but I think it's a little easier for people to get "I don't eat animal products because of an ethical stance" than "I can't eat anything that is contaminated by gluten because I'll get really sick". Thus far, I've experienced pretty decent respiratory symptoms from being in the same room as flour being mixed into dough (yes, that sensitive), fortunately learned the turkey had had flour put on it before roasting, and then had to explain several times that no, I can't just eat around the skin, and then saw the leftover pie I made put in the same container as the gluten-y desserts, which has the side benefit of sparing me from binging on more pie.

It doesn't help that two people in my family are "avoiding gluten" as a diet, but will still drink beer, have small amounts of gluten-containing foods, and not worry about contamination. It also doesn't help that family sees me not as a healthcare provider, who knows enough to say "intestinal biopsy would have been ideal, but the obvious dx is severe gluten sensitivity of some type", and who consulted with other healthcare providers who concurred.

I'm really fortunate in that two of my three housemates also avoid gluten, and the third is super good at cleaning...because I could, obviously, be getting glutened all the time. 

So, yeah, Thanksgiving was hard, and frustrating, and I felt like a jerk for making people feel like they made stuff wrong, or asking questions about the exact ingredients of everything...and it's not like I don't have enough issues around food (and weight, and body image) to begin with (the "I still think I'm fat when even my mother doesn't" post goes into the queue with "more talk about gender"). Just, even with people who have seen how sick I was from the age of twelve or so on - twenty years shaped by chronic illness - it's almost possible to get them to understand that "gluten contamination" is way less of a concentration than what would be visible to the eye. It makes me worried about a) how do I explain it to people who didn't see how sick I was - and see a fit and healthy thirty-something who has a weird diet and b) how do I support my patients who have celiac or non-celiac gluten sensitivity (which is incredibly common), and give themselves the tools to help themselves remain healthy?

As a personal aside, it turns out my prior issues with dairy were due to my gut being damaged at the time - I don't have cross reactivity to casein, which is a huge mercy. This opens the door for paleo being a template or a method that I make work for me.