Give Me A Break

A million years ago when I first started blogging, it was a different world. Mostly, it seemed like a nicer world at least in terms of how folks felt about making comments on blogs and such things. It was before “never read the comments” became the modus operandi of most folks. Is it me, or has the cyber world started to feel less polite? (That is a rhetorical question, of course. Because it really has become a dangerous place for many, and an uncomfortable one for others.)

Because of that, there are many, many topics I refrain from writing about these days. It just isn’t worth the feedback sometimes. However, I decided to stop biting my tongue on one topic and hope that the responders are at least polite on this one.

I’m going to give you a few sentences and I want you to sit with each of them for a minute – just think about how you react when you read each sentence.

  • I can’t eat shrimp – I’m allergic to shellfish.
  • Red wine? No, thank you. It gives me a headache.
  • I’m a vegetarian because I am a Buddhist.
  • I need to make sure this doesn’t have any nuts in it because I’m very allergic to them.
  • Do you have decaf? My heart doctor says I have to avoid caffeine.
  • I can’t have dairy – it gives me such bad farts it’ll peel the paint off the walls.
  • I avoid gluten because I feel better when I don’t eat it.

Did you notice any response on your part when you read any of those real reactions of people who avoid eating certain things for various reasons?

I’m guessing your response to each one is based on a combination of various things: if you personally identify with the same issue, if you know someone who has the same issue, if you think it is a valid reason, or if it sounds medically serious. Like I said, your response to each one is probably a combination of things. But here’s a curious thing. When the people I know said each of the above things, the responses they received reflect the audience’s comfort in commenting on the topics. And that comfort level makes all the difference.

Example: I have never heard a lactose-intolerant person be told that their issue is all in their head. I’m guessing it is because flatulence makes bystanders uncomfortable too. Folks with peanut or shellfish allergies die from those foods so we take those allergies pretty seriously. And booze that makes us feel lousy seems like a logical thing to not consume.

But when I say I avoid gluten, the reactions I get from people are curious indeed. Some common ones are:

  • Sending me articles proving that gluten-intolerance isn’t real.
  • Saying, “Oh, you’re one of those people.”
  • Asking me, “Do you actually have Celiac’s or is this just some diet?”

The fact is, my doctor doesn’t know what about gluten or wheat makes me feel sick. In fact, none of the medical field knows what’s going on with gluten and people. But then, they don’t know what about red wine makes people feel unwell either.

But this is what I do know. When I eat food that includes gluten, I start feeling not very good. And the longer I eat it, the worse I feel. My ankles, knees, and wrists ache. I get migraines several times a month. I have a headache every single day. My stomach feels like I’m being stabbed. I burp what Mister Soandso calls “Demon Growls.” And if I keep eating gluten, diarrhea becomes my daily normal.

When I don’t eat gluten, I don’t experience those things. So is gluten intolerance all in my head? I don’t think so and my doctor doesn’t think so. But lots of folks do and they like to tell me that it is.

Because I have a crazy hope of convincing folks of understanding differing viewpoints, I’ve been known to try to explain why being gluten-free is good for me. I tell them about my history of getting to this point.

The first time I had the intense stomach pain I associate with eating gluten, I was 15 years old. It continued regularly until I finally had health insurance as an adult and I started seeing a doctor for it. I kept food diaries, was tested for viruses and bacterias, given acid reducers, muscle relaxants, and even a full upper GI complete with drinking strawberry-flavored barium while spinning in an x-ray machine. The doctors were stumped and finally told me to try to avoid food and situations that seemed to make it worse. I was 25 years old and had spent 10 years feeling sick about half of the time.

I was 38 when I had Littlest. He was a miserable, hysterically crying infant and as a nursing mother, I did the Elimination Diet (prescribed by his pediatrician) to figure out if something I was eating was affecting him. It turned out that he was dairy-intolerant and as long as I avoided all dairy, he was better. The funny thing is, the two weeks I ate a very limited palette, I was too.

Through a winding and crazy process, I eventually realized that eating gluten makes me feel badly. My doctor tested me for Celiac’s and my test came back negative. (Thank goodness!) It’s been about 5 years since I started limiting my gluten consumption. Sometimes I eat something with gluten in it because either I miss the food (Friday night pizza!) or it is too hard to be “that” guest at someone’s home, or I don’t realize until later that it had gluten in it. And every time, I know it. These days, it is usually headaches and joint pain. But there have been times when I ate gluten over the course of a few days and then all the stuff comes back and I vow to be better about avoiding gluten again.

For me, it doesn’t matter if there is no such thing as gluten-intolerance. When I eat gluten, I feel worse than when I don’t eat it. And that trumps any study done and article published on the topic.

So why am I writing about this if I don’t care what the articles people send me say?

Because people seem to think that they can show me the error of my ways if they just link enough HuffPost articles to me, or argue eloquently enough on the topic.

And that is what is weird about all this.

Have you ever heard a lactose-intolerant person have to defend not eating dairy? No. Hell, if somebody doesn’t eat broccoli because they don’t like it, do other people feel the need to argue about it? No.

And yet, if a person avoids gluten, it must all be in their silly little heads.

And that’s what bugs me enough to get me to blog about being gluten free. I am no less intelligent because of my dietary choices than a Catholic during Lent, a vegetarian, or a shellfish or nut allergic person. No amount of explaining changes how my body interacts with gluten, even if it doesn’t make sense. Heaven knows, scientifically collected data often lags behind our experience, but that doesn’t make the experience wrong, it just makes the science needing further experimentation. Just about every scientific truth took some time to figure out and I figure the same will be true for what people like me experience when we eat gluten foods.

Maybe it’s the hybridized wheat grown today. Maybe it’s the preservatives they coat the wheat with after harvesting it. Maybe it’s the final spray of RoundUp that farmers are encouraged to do before harvest. Maybe it’s the combination of wheat and yeast. Maybe it’s something seemingly totally unrelated like exposure to plastic creating a histamine response that sets off a chain of events.

I don’t know. But I can tell you this: I have already read all those HuffPost articles and updates to Mayo Clinic, et al. I am constantly trying to figure out why my body feels like this, so I don’t need any links or helpful conversations at dinner parties.

What I need is a break from the message that this is all in my head.

Because it isn’t. It’s in my gut and my joints and my head.

So just give me a break, please? And a gluten free option that isn’t just carrot sticks.

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2 thoughts on “Give Me A Break

  1. Good on you, Kristina. Between Irritable Bowel Syndrome, Anxiety/Depression, and general weirdness I’m kind of, if not the king, at least a count of “all in your head”. “All in your head”, can maim or kill. Thanks for sharing this, and hang in there kiddo.

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