Living with an Autoimmune Disease

I was loathe to write about this, but then the more I thought about it, the more I thought that the reasons I didn't want to write about it are why I should write about it. I should write about it for everyone else out there with Celiac or who can't get a doctor to take their symptoms seriously. Because nobody wants to hear about it.

It would be one thing, perhaps, if I had a more seriously perceived disease like Lupus or Crohn's, but I have Celiac disease, that little annoyance that means I can't eat gluten. Simple right? Nope.

First are the issues of living with an invisible disease, which I know a lot of people can at least relate to. You don't LOOK sick, so people don't think you're sick. And I, for one, don't really want to talk about barfing and abdominal pain and diarrhea, so my choices are just be quietly sick and nobody knows about it or discuss my bowels, which is SO NOT FUN, despite how it sounds. It's SO funny being violently ill! YUK YUK!

But did you know there are tons of other symptoms? And the severity and symptoms vary patient to patient? Some common other symptoms are anemia, fatigue, joint pain, migraines, immune deficiency, vitamin deficiency, low blood sugar, extreme weight loss, and depression. I have a lot of those symptoms. When I eat gluten, my body attacks itself.

There is no cure for Celiac Disease, but I suspect people also don't take it seriously because the solution sounds so simple: just don't eat gluten. But it's really not that simple. Do you know how much gluten is in our world? There are the food offenders, sure, which means avoiding so many common and convenient foods, but it's also found in makeup (meaning it could be in lipstick which is partially ingested from a simple lick of the lips or, say I get some loose powder on my hands and then touch my mouth?), in soda syrup, in medications, in the wine barrels of cheap wine, etc etc etc. I have to check every damn ingredient and use google to look up mysterious sciencey words.

Sensitivity does vary. Me? I'm extremely sensitive. That means that the tiniest particle of gluten makes me sick. I can't have ANY cross contamination, meaning eating at group meals or potlucks or buffets is a NIGHTMARE. Gluten will stick to your fingers, your lips, your utensils (especially wood) and anything you then inadvertently touch could make its way to me. It goes without saying that I get sick every single Thanksgiving despite only eating GF foods due to cross contamination. When I did catering, I washed my hands CONSTANTLY to protect myself and others (which meant I always had dry cracking hands) because the tiniest crumb could not only fuck me up for a week, but could compromise my long-term immunity.

But I don't want to offend people! They invite me over for meals and I want to say don't bother or to let me just bring my own food. It's so incredibly stressful that it leads to another symptom: anxiety. I have panic attacks before every single party or pot luck. I eat beforehand and I try to be careful with what I touch, but gluten quiet literally lurks everywhere. I can't even kiss my husband after he's had a beer.

Don't get me started on restaurants and waiters who think I'm lying, in part because of people who DO lie about having an allergy just because they avoid gluten and then you catch them eating a fucking bagel.

And, of course, there's the annoyance factor. I can't tell you how many times I've been told what an annoyance I am for discussing my illness, for wanting to keep myself safe. Do people who wear on seat belts or get STI testing or who get vaccines or who look both ways before crossing the street or who follow basic food prep safety get told how annoying they are (btw I do all those things and have NEVER heard boo about it)? Are there memes about how road safety is just another fad?

Don't get me started on how people send me these memes as if I'm in on the joke, as if HAHA GLUTEN IS SO FUNNY LOL! Welp, it's not funny to me; it's poison. I am not exaggerating.

I don't want to be that annoying person. I don't want to call a lot of fuss over my neediness and high maintenance dietary needs. But what are my choices? Keep myself safe and talk about it and educate the people around me about hidden gluten and cross contamination? Or get sick AGAIN?

I have a lot of sympathy for those who say they're gluten sensitive or intolerant but can't get a celiac diagnosis, because it took me a long time to get diagnosed. I lived extremely sick for YEARS without knowing why. I was so extremely thin because I wasn't digesting my food. I remember a good friend of mine commented how she couldn't believe that I could eat burgers and burritos every day and stay so thin. I'm telling you now, love, it was the Celiac diet! The body simply rejected all that food! And all the nutrients too.

I saw doctors. I had tests (all tests but the one). My doctors said that Celiac Disease only affects 1% of Americans, so the likelihood was low, therefore that can't be it. What kind of shit science is that? First, I know the test is invasive and expensive, but how can you just write it off and throw meds at the problem without doing the damn test? Second, if people were able to get tested, that percentage might be much higher. How can we possibly know how many people are living sick with diseases if we don't TEST THEM?

The only way I got tested was to demand one. I knew next to nothing about it, but I blogged about my symptoms and a reader told me it sounded like Celiac, so I did my own diet journal and I marched it into the shit doctors at Kaiser and demanded a fucking test. But the health care system in this country is a story for another day.

Funny story: when doing disaster preparedness, some people made fun of me for ordering my own GF food rations instead of eating the free ones with the gluten. I believe the phrase was, "When you're starving, they'll be good enough!" Well, nope. Because starving would be a slower death than letting gluten kill me quiet violently. Remember how the pioneers always died by dysentery on Oregon Trail? That would be me. I read an article recently about a Dutch doctor during WWII and some kids (who were likely Celiacs) got better when there was a bread famine. They GOT better when everyone else was starving. Because the bread had been killing them.

But, sure, Celiac disease is hilarious and annoying for those who don't have to worry about it. Maybe it's people who make fun of it that are annoying. Maybe those people just sound like assholes. Too bad being an asshole isn't a disease.