Celiac Disease Awareness Month - Things I've Heard

Having a disease that isn't really talked about much leads to a lot of strange and silly questions. I have no judgement for anyone asking an honest question, no matter how silly it may seem, as long as they are not rude about it. Below are several of the things I've heard when I tell someone about my disease for the first time, and the answers I'd give if I sometimes wish I could give.

"So do you eat those rice cake things?"

 Probably. Rice is gluten-free. But I promise you, I eat a lot more than one thing.

"Potatoes aren't gluten-free."

Please, please, please just trust me to know what I can and can't eat. I've been doing this for awhile, and it's actually pretty serious. I've done a lot of research, and I've made a lot of mistakes. So please just stop telling me basic things like this, especially when you're wrong. (Potatoes are perfectly gluten-free, I basically live off of them.)

"Ugh, is this because it's trendy?"

First of all, no. Second of all, if the answer were yes, this is still an inappropriate question. Do I ask you if you're wearing skinny jeans just because it's trendy? No, because I'm not an ass.

"Couldn't you eat a little?"

No. Just no. For goodness sake, no. I get sick for a week when someone else accidentally contaminates my food. So no, I will not "just eat a little" of that cake. And don't take it personal. I don't take it personal that you're trying to poison me.

"So are you a vegan?"

Wanna hear something crazy? Wheat is vegan. So is barley, and rye. In fact, all original forms of gluten are vegan. Meanwhile, no animal products naturally contain gluten. So yes, I could be a vegan with celiac disease, but that doesn't seem like a natural progression to me. Would you ask someone with diabetes if they're vegan?

"What do you even eat?"

Here it is. The big one. Man, I almost don't know how to answer this. Well, I eat food. Just like you. I eat meat, milk, bread, cheese, eggs, fruit and vegetables. Yeah, I buy expensive bread and I have to read the ingredients on everything I buy, but I promise you that your meals don't look that different from mine.

"So what can't you eat?"

Gluten. If you expect me list specific foods, we're going to be here for awhile. It's in a lot of things including wheat flour, soy sauce, licorice, barbeque sauce, ham, beef & barley soup, pretty much most soups, actually, and a lot of other stuff. No, it's not in everything, but it's in a lot of things you wouldn't expect it to be, and I have to be very diligent to avoid it.

 "Oh my gosh, I didn't know!"

That's okay. It obviously hasn't come up. It isn't like I'm dying or anything. The fact that it's coming up now means I don't have anything against telling you, either. But I also don't want to prance around telling everyone I meet, because there's more to me than that.

"How long have you had it?"

 No judgement for asking this question. It's kind of a complicated one. The disease is genetic, so technically I've had it my whole life. However, scientists believe that something will happen to 'kick it into gear' and you'll become symptomatic. I believe that my celiac 'kicked in' somewhere during high school, because I remember being sick a lot and missing a lot of school. I went to a lot of doctors, and had a lot of tests done, but no one could find anything, so I believed it was just in my head. When I was 21, I had another series of tests done, and this time they found the celiac disease. So I've known about it for a little over 2 years, and that's how long I've been eating gluten-free, if that's what you're asking.

 
Although I may answer these questions a little snarky and sarcastically, that's only to make light of the situation. I promise that I am always open to questions, and if you ask me any question, I promise to answer with grace and kindness, unless you're just being rude.

Gluten Free Support Group

The second-ever gluten-free support group was last night. Last time, eight or nine people showed up. I figured more would come this time, but for some reason, there were only four of us. All four of us had been to the last one, too.

Two of the women were the ones that organized it and put it all together. The third was one that I remember from last time as a non-stop talker. Irrelevant, unrelated things that she just didn't stop talking about.

I arrived a little early, and sat down alone while the woman running it ran around like a chicken with her head cut off. The next woman to arrive was the talkative one. I recognized her, but I don't think she recognized me. She sat down next to me and said, "So, how long have you been diagnosed with all this business?"

I smiled and said, "Nine months." I was thinking that morning that if my celiac disease had been a pregnancy instead, I'd have a baby by now.

She gave me a smile that I can only describe as an 'Oh honey' smile and said, "You're still learning."

Thanksgiving Dinner

This is my second major holiday of my gluten-free life. There really are only three a year: Easter, Thanksgiving and Christmas.

I tackled Easter by avoiding my family and having dinner with friends, and the friend who cooked made everything completely gluten-free (and mostly vegetarian).

I did have a big family dinner back in May, which I cooked, and made completely gluten-free. (That family was just my parents, siblings and SO's.)

But this time, we had a big family dinner. My grandparents, their children, their children, and all the SO's involved. Oh, and one great-grandchild. In years past, we would all gather for Christmas at my grandparents' and do a gift exchange. It was our family tradition. In the past five or so years, my grandparents bought an RV and started driving south to Arizona every fall. They come back up in the spring, and completely miss Christmas (and, of course, all of the snow).

Gluten Free Support Group

I stumbled across an ad for a gluten-free support group meeting the other day, and I thought, How on Earth did I not know about this? Well, it turns out it was the very first meeting. So I guess that was lucky. I toyed with the idea of going, decided not to, decided to, and eventually M said I would regret not going, but chances are that I wouldn't regret going. So I went.

It was last night, and the meeting only lasted an hour.

I expected the meeting to be full of pretensious, obnoxious, quinoa-eating, GF-fad people and people who didn't know what they were talking about. As it turned out, there was only one woman who didn't know what she was talking about, and nobody was there as a fad-eater.

I was, however, the youngest person. By about 20 or 30 years. I also was the newest celiac, with everyone else's diagnosis dates ranging from three years to twenty-two, and one woman whose husband was diagnosed in the 1960's. I didn't really learn anything, as this was more of a "gather, chat, share, and support each other" kind of meeting. Which was really nice.

I talked about my diagnosis, how sick I was, how sick I've been, how hard it is not to cheat, and how I really shouldn't eat dairy but I do. And I got nods, sympathetic smiles and "I've been there" looks. The other women talked about their struggles, their peripheral symptoms, their children, and husbands, and just plain struggles.

One woman was IBS, so she was free from gluten, soy, corn, potatoes, dairy, and a growing list of smaller things. A few women weren't diagnosed, and hadn't seen doctors (they got a few disapproving looks), they just found they felt better eating gluten-free. One of these women said her mother and grandmother struggled with chronic constipation, so she went GF to avoid that, and has never actually been all that sick.

One woman was, well, kind of ignorant. She talked about seeing a naturopath, having digestive issues, and being told not to eat gluten, dairy or soy. She talked about a few of her favourite recipes, one of which used oat bran. There was a definite look shared amongst the group. Oats are one of those iffy things that people disagree on. She caught that, and said she sometimes substitutes with wheat bran. That's when one of the older woman said that wouldn't be gluten-free then.

Another woman talked about how wheat causes cancer, and how nobody should eat gluten, because you'll get cancer. She knows because her dad died of cancer, her brother has cancer, her uncle died of cancer, she knows all these people who have cancer or died of cancer. Thing is, none of them had stomach cancer, or intestinal cancer. There was brain cancer, lung, skin, and breast.

I mean, you're free to believe what you want, and eat what you feel safe eating. But I don't think you should go around spouting crazy and make uninformed people afraid. Also, every single person in the room had a problem with wheat. She was kind of preaching to the choir.

For the most part, though, I really enjoyed it. It was nice to chat with women who understand what I went through, and what I go through every day. One of them was actually friends with my mom, and although I hadn't met her before, when I was first diagnosed, my mom passed along a form letter from her. It was a "Hi, welcome to gluten-free. It sucks. These products rock, you can buy them here, and here are a few basic recipes I rely on. This is how I make my flour. Feel free to email me." It took a week before I even read it, because I didn't want help. I didn't want to talk to people. I was angry, I felt alone, and I pushed away everyone who wanted to help me. I admitted to this woman that I had gotten her email, but had never made anything, and didn't even want to read it at the time. She smiled, nodded, and said, "I know. It's hard, you don't want anybody's help, and you're so angry." It was such a weight off my shoulders (one I didn't know was there) for someone to verify the way that I used to feel.

It really was nice to just sit in the company of half a dozen people who understood. I've had a few conversations with other celiacs (slash other gluten free people for various reasons) and sometimes I walk away shaking my head, and sometimes I feel a bit better about things. I won't be calling up these women and regularly hanging out with them, but I will definitely try to make it to the next meeting.

Day 67: People Suck

People suck.

Somebody got bored and smashed a back window on my husband's pickup.

Man.

The police said similar things happened around the neighbourhood he works in. Figure somebody went around with a spark plug on some fishing line, threw it threw his back window, pulled it out, and moved on. No reason, nothing stolen, just some kids who got bored and committed random acts of violence.