Food complexities

Going gluten free just before travelling internationally was, perhaps, not one of my best decisions – but it was a prudent one.

One complexity is that I don’t know all the tricks of the trade yet. I am not educated enough about reading labels to find the hidden gluten. Just occurred to me that you could make a good educational game, like a crossword or word search, where the words included are glutenous words that don’t necessarily sound like gluten.

In some ways I’m looking for the gluten free diet to be my panacea. Originally, I had hoped that the CPAP machine would be. The CPAP machine has made a huge difference for me. I’m sleeping a lot better now. Although, I am finding I don’t necessarily “need” it now that I’m not on any hormone therapy. It highlights to me the role estrogen plays in my sleep. Unfortunately, when I get back to California, I’ll be going on ovarian suppression, so the estrogen levels will again tank, and the worst of the sleep apnea will likely return.

There are a lot of overlap symptoms between cancer recovery and celiac disease. Fatigue is one of them – although I mostly recognize it for what it is, and exercise has been my best treatment to battle it. For the most part, I’m winning that battle.

So back to the title, food complexities. One of the challenges is that I don’t know how to recognize when something is truly gluten free or not. I also don’t know how my body responds to being gluten free. I can tell some differences right away – so I think, based upon my bowel movements, that somehow in the last 24-hours I’ve been exposed to some form of gluten. That might have been something I ate on the plane or something I ate for lunch after arriving. I don’t know. I’m not familiar enough with my body yet to know what is causing what. I also am not in a position to be only eating things that I know are gluten free. I will be getting many of my meals provided in the next week – I’ve asked for gluten free, but I cannot guarantee it.

When I think of eating gluten free, I think of some of the struggles my father has had. Part of it goes back to his childhood, when gluten free options were very limited. He came to see eating gluten free as a negative, almost as a form of punishment. He certainly saw it from the perspective of missing out rather than one of exploration. That being said, they didn’t have the same options we do now. There being a fad in gluten free, means that there are many more options.

The comment that is often made is that it is a life style change. They are not kidding. It is not like any other simple dietary restriction – it is a huge pain. I am choosing to approach it from a bit of a different light. I am approaching it as gluten being poison in my body. That makes it a whole lot easier for me to say no, especially when the thing being dangled in front of me is something that I’d love (like a nice warm brownie).

Part of me is still feeling a little bit of impostor syndrome. I don’t have a formal diagnosis. I have not yet seen the GI doctor. So, part of me feels like I’m “faking it”. I also didn’t have an immediate response to going off gluten – but it has only been a couple of weeks. I did have a couple of real responses. Changes in bowel movements, clearing up of blisters. I cannot say I’m feeling remarkably better just yet – but then again, I’m also feeling better now that my body has some estrogen in it – however temporary that may be.

Reading the facebook celiac group, I’m struck by the need to get official opinions on what is happening. The issue is so very clouded with stories of children being diagnosed, or not being diagnosed, as well as those who are going gluten free with no diagnosis and those who test negative but are convinced they are false negatives. Not that their experiences are not valid, just that there are too many people in the group with too many different variants that the information is less useful. Arguably, I’m an impostor in that group, as I haven’t seen the GI specialist yet.

I’ll be updating things here once I do see the GI doc. I’ll talk more about the diagnosis process once I have some formal experience with it. I’ll also be starting up a new section of my website with Gluten free recipes.

I’ve choose to approach gluten free, in a similar to the way I approached breast cancer treatment, with a sense of adventure. I enjoy cooking and adapting recipes. I now have a reason to adapt recipes. I can adapt with purpose. So far, I’ve learned that the GF muffins and waffles I made (lemon cranberry) were both quite good hot, but pretty awful cold (so much for airplane snacks). It means that as long as I can throw them in the toaster oven, then they are a good quick snack … just not worth taking along with on a trip.

One advantage to this diagnosis (if advantage is the right word, perhaps it is a better choice than gift), is that it has relieved a lot of my cancer stress. Unlike cancer, there is something that I can do about it. There is a clear path to treatment. Unlike cancer, were the treatment made me sick, with celiac disease the treatment actually makes me better.

And so, I know have a non-cancer reason for most of my symptoms, and that makes me feel a whole lot better!

  • Becky

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