Saturday, March 23, 2013

journey of a Celiac

To preface this post, I know that by writing it now instead of waiting for it to sink in, I run the risk of sounding like a bitter old woman. In a few days, once I've recovered from the shock, I will look at all the things I'm grateful for and realize that I will get over this. But sometimes, getting it all out there helps in the healing.

As many of you know, the year past has been a difficult one for me. Feeling awful but not knowing why. Test after test after test with no result. The day my doctor told me it might be a food allergy and to try cutting out all wheat products was a day of reckoning for me. On the one hand, I thought that there was no way that wheat was causing all the problems I had been having for the past weeks, months, and (what I'd find out later) even years. No Way. But, that small voice inside me said to try it, because it made sense. All those little pieces adding up. The unexplained adult onset asthma. The cureless migraines. The weight gain despite every effort to maintain a healthy diet and exercise regime. The sleeplessness. The brain fog. The getting-more-constant-every-day stomachache that never seemed to disappear.

So I did it. I cut out wheat. I cut out rye. I cut out malt. I cut out barley. And it was the hardest thing I've ever done. Who would have thought that so many things would have gluten? Soy sauce? Soda? Canned food? JUICE? (Yes, folks, there is hidden gluten even in some juices.)

Grocery stores trips became a chore, taking hours upon hours since we had to check every SINGLE item we were purchasing for hidden gluten. The simple fact that gluten is not always listed on a product infuriated me. In this day and age, with such a rampant disease, labels deceive. And even for those items that didn't have gluten, there was always the risk of cross contamination. We had to stop buying any items that were even PROCESSED in a factory where there is gluten.

At the beginning, we said "two weeks." Two weeks to see if it made a difference, because this was just too hard to do if there wasn't one. Those people who go "gluten free" for a diet have NO IDEA what it's like to have Celiac Disease. (**Side note: if you have a friend or loved one who truly has Celiac Disease, please don't trivialize their experience by calling them picky eaters or asking them if they've lost weight with their new diet. Nobody in their right mind would choose to live like this if they had the choice. It's not a diet. It's merely the only option someone with Celiac has to be able to live life without constant pain**.)  Yes, these fad dieters have stopped eating bread and pasta. But I have no doubt in mind that these people still shop pretty regularly for most of their other products. Shopping for them does not include spending hours on their phones in various aisles, checking product websites, food allergy blogs, and iPhone apps created to help Celiacs purchase food that is safe for them. They don't fret and worry every time they go out to eat, or throw a party that has gluten-y food on a table next to their safe food. They don't have to worry that one bite of gluten will have them writhing on the floor in pain for the next week.


Yes, another thing I learned on this journey of self-discovery is that one bite is all it takes. One crumb. One speck. Once the body of a Celiac begins to repair itself from all the damage gluten does, it begins to see gluten as the enemy it so rightly is. Some have likened it to an alcoholic who has been sober for a year and then drinks a bottle of vodka. The body, knowing it has ingested the enemy, rejects it. But here's where the difference lies. Celiac is an auto-immune disease, so instead of attacking the gluten, the body attacks itself to get rid of it. EVERY time I have even a speck of food that has touched gluten, my body beats itself up. The panic attacks, the migraines, the horrible "crunching" feeling of glass in my abdomen. The ten or so other symptoms I won't go into detail about here. Do I need to say more?

So, obviously, I avoid it.

Easy, right?


It's more than just regularly checking to make sure food it safe. It now involves cooking everything from scratch. It involves, basically, not eating out. It involves going to work after an attack, feeling like I was hit by a truck, and then pretending to be okay so my students and co-workers don't see how miserable I am. It involves being the odd-man out at parties and gatherings. Nobody wants bring up the topic, but nobody knows how to deal with it, so it's just awkward. And sometimes it's even worse when people try to make the effort. They might make me something gluten free and I feel like I'd be an awful person if I don't eat it. But in most cases, that person didn't think to disinfect the utensils with gluten free dish soap. Or check their spices for hidden gluten. Why would they? They don't feel "sick" for a week or two if steps are skipped. I would have been one of those well-meaning friends six months ago, not realizing I wasn't being as helpful as I thought.

I feel like a total jerk just having typed that last paragraph. People are reaching out and it sounds like I'm not grateful. BELIEVE ME, I AM. It's just that every day is a new experiment. Every new food is an uncertainty. And most of the time, in my experience, it hasn't gone well

So that brings me to winter. Six months in, and things finally start to feel manageable  I have found a few restaurants who are happy to accommodate my (what seems like) finicky eating. I have been able to share with my friends enough so they have a basic understanding of what I'm going through. I've got a handle on the situation and I don't feel so horrible about having Celiac.

Then Christmas comes and it all starts to go downhill.

(To Be Continued) To read the next part, click Part Two: Getting Through the Maize

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