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Nov 13 2014

Let Me Tell You About: Living Gluten Free

living gluten free

I keep seeing articles lately about the myth of gluten free, that really no one except those with pure 100% doctor diagnosed celiac should be avoiding gluten. That it’s a scam, the newest health fad, an expensive way to be trendy. Well, they got one thing right: it sure as hell is expensive. The grocery budget is second only to the mortgage.

Why does it matter to anyone if someone else is gluten free? Seriously, why? That makes about as much sense as getting your knickers in a knot about someone only wearing cotton because other options are uncomfortable or painful or make them break into a rash. Why do you care?

No, I was not 100% doctor diagnosed with celiac when I went gluten free 6 1/2 years ago. I’d been working with my doctor to figure out why I felt like the bottom of a worn out shoe all the time. The best he could come up with was stress, and to get more sleep, eat well, exercise. Well, I was already sleeping and eating well, and it’s pretty hard to exercise when even pushing the accelerator on the van to make it go vroom exhausted me. Western medicine fail. I started seeing an acupuncturist and the first thing he had me do was a two week food elimination detox. It was a very long two weeks; for several days in the middle there I was essentially a gluten free vegan. I got very good at rice, and started to feel like I was coming alive again. But funny thing as I started adding foods back in. No problem with dairy or eggs, but gluten? I had an english muffin for breakfast, and an hour later practically drove the van into a ditch because of the mind-blowing exhaustion. That scene repeated itself several times as I gradually came to accept that gluten was the culprit. I could have had the celiac blood test or endoscopy to confirm, but it would have meant returning to gluten for a minimum three months beforehand. No way I was doing that, I finally felt alive again.

I lose my mind when I eat gluten. No, really, it’s as though my mind is just somewhere else and I can’t remember where I sat it down. Full-body exhaustion, mind-blowing fatigue, brain fog so strong I cannot complete a thought for love or money, irrational anger at everyone and everything, increased levels of frustration, and an intense desire to crawl into a cave and not move until sometime in the next century. That’s for at least three days, and then the stomach problems hit for another few. I can easily lose a week to ten days to gluten poisoning. But it’s not celiac because an MD didn’t diagnosis it, right?

For the most part, I’m ok with eating gluten free. I’ve found great recipes, workarounds, and blogs to completely revamp how I cook. Usually it’s not a huge problem. Until it is. Like when Tom is out of town and there is little in the house to eat…I can’t just order carryout and have it delivered to my doorstep. Or when we’re all out running errands or at some sort of large event…we can’t just find the nearest hot dog shack or concession stand for lunch. Or when we’re traveling and need to bring our own food, though that also has a lot to do with Andy’s dairy and corn sensitivities (but also gluten!). It’s not easy, it’s not cheap, and even though I try for it not to be, it’s limiting as hell.

I used to be an adventurous eater. My dad introduced me to sushi when I was 8, loooooong before it was a trendy food and available at every supermarket deli. I’ve eaten chicken feet, think frogs legs are overrated, and loved to find little out of the way places for meals. A traditional Japanese breakfast is bliss. I can’t do that anymore and think I’ll eat safely and it breaks my heart. We stick to chain restaurants because there’s a greater likelihood there will be some sort of gluten free option for me (and, again, dairy/corn free for Andy). I miss eating without wondering if it’s going to steal so many days from me.

So when I read articles stating that it’s all in my head or just a diet fad (trust me, I have not lost weight being gluten free) or just a way to scam the easily spooked, I get a little pissed.

How I eat and what I eat does not concern anyone other than me and maybe my family because they eat what I make. I appreciate how celiac awareness has made it so much easier to find gluten free food (not so easy back in 2008), but the inevitable backlash just really isn’t necessary. Back off. Why I eat the way I do isn’t available for your comment. No, I’ve not been 100% doctor diagnosed as celiac, but based on the University of Chicago Celiac Disease Center, I have enough of the symptoms and/or conditions associated with celiac to warrant concern.

I’ll be happy when social media and the bored press move on to the next thing to bitch about. I have no idea why celiac and gluten sensitivities are rising rapidly, but gluten free is here to stay. I’m thrilled about that; it means I can make more of the foods I miss here at home.

I just miss how it used to be.

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  1. qH

    I have no idea if I have celiac, but I have an honest-to-FSM wheat allergy (recently diagnosed with Science! and as bad as the walnut allergy that’ll send me to the ER, although with different symptoms). I cheated yesterday and today I am am absolute mess–emotionally, physically, energy.

    My complete failure of a day? I blame a cupcake. And although I’m also all kinds of dairy intolerant, I can say Domino’s (yeah, I know, I know) has a gluten free pizza (although they don’t guarantee against cross contamination) which is twice as expensive as a large pizza…but on days when I don’t want to cook and don’t want to go out and I so miss living so close to my sushi place that I could get our own wi-fi signal there…it works. I’d rather have sashimi, though.
    qH recently posted…RFP: Request for PlanMy Profile

  2. ChiTown Girl

    Hey, Sister, I don’t remember if you’re an Aldi shopper or not, so I want to tell you that their selection of gluten-free foods has grown by leaps and bounds in the past few months. Walmart also has nearly half an aisle of all gluten-free items, (at least the Super Walmart near us does.) My sister and I have also found tons of gluten-free stuff at Marshall’s, believe it or not.

    Hope you haven’t been too miserable today, with the snow and plummeting temps. :-/

    xoxox
    ChiTown Girl recently posted…Thankful(?) ThursdayMy Profile

  3. Robin at OurOwnFlavor

    Amen! My son’s tics get worse with gluten and his OCD gets absolutely horrible. My husband poops his brains out and acts demented with gluten. We became a gluten free household for them and my migraines (which I was getting 2-3 times a week since my strokes) completely stopped. Now I only get migraines when I “cheat”. I am staying gluten free for myself now.

    My son is allowed total freedom to eat gluten outside the house and he is so miserable after eating it that he now chooses not to without any input from us… And he’s five. For a five year old (who happily feeds himself and his sister ice cream and chocolate chips for breakfast if they get hungry before we wake up) to make that decision, clearly there is more to it than a fad.
    Robin at OurOwnFlavor recently posted…Stuff You Need to Create Holiday TraditionsMy Profile

  4. Robin at OurOwnFlavor

    P.S. My go to gluten free “meal” if my hubby isn’t home and I don’t want to cook is to hollar: “Who wants to make chocolate cupcakes for supper?” And then have the kids do most of the work. My recipe is fairly low in sugar has a couple eggs and applesauce and sorghum flour so it’s really not that different from pancakes nutritionally. 🙂 They each drink a glass of milk with it too so that kind of redeems us.
    Robin at OurOwnFlavor recently posted…Stuff You Need to Create Holiday TraditionsMy Profile

  5. Val S

    Whoo HOOO! You put the words in my head, on the screen in front of me! “Why does it matter to anyone if someone else is gluten free? Seriously, why? That makes about as much sense as getting your knickers in a knot about someone only wearing cotton because other options are uncomfortable or painful or make them break into a rash. Why do you care?”
    My family is in pretty much the same boat as you. I went 13 years of strange and odd problems, that didn’t quite fit any of the dozens of diagnosis’ I was given. At one point, they (some of the dozens of docs I saw over those years) were certain I had MS, at another, Lupus, Rheumatoid Arthritis, Osteoarthritis (at 25), they finally decided I had Fibromyaglia, Chronic Fatigue syndrome, AND some form of arthritis, but they couldn’t decide on which.
    My son had major problems since he was itty bitty, we realized in 1st grade that he was getting petite-mall seizures, which affected his short-term memory. He was diagnosed ADHD at age 4, and was being processed for a diagnosis of autism. He had ‘eczema’ -“don’t worry, he’ll grow out of it”. He also, while not considered to be ‘failing to thrive’ did not grow. Went from being born in the 40th percentile, to by age 5, being in the 4th %. Oh, and his stomach looked like a 9m prego ladies.
    My daughter also didn’t grow (90th% at birth to 40th% at age 4), her hair didn’t grow, her stomach looked like prego, and she had night terrors, extreme fatigue, and belly aches so bad, you hurt just looking at her.
    My mom was diagnosed Celiac, so I started learning; went to the doctor, and he REFUSED to test us. Claimed our insurance wouldn’t pay for it. I believe now it was simply a lack of knowledge on his part. Well, he also said, “you could just try gluten-free and see if anything changes.” I do not think he thought anything would change. That was 2 years ago. Within 6 months, my son had grown 6″, and was removed from the autism diagnosis process cause he didn’t fit the symptoms anymore (He’s now in the gifted program at school), I quit having minor car incidences, and went from unable to walk the 1/4 mile to my kids school, to able to walk MILES, and my husband quit having to come home from work and cook and clean, everyday cause I couldn’t function; my daughters belly aches stopped, her hair started growing, and she started growing again too. No more lost %’s. I also, and I believe it is from the ability to function more, and the lack of bloating, have lost 40lbs. I can now ride my bike 2-3 miles without collapsing, come home, and cook dinner. I can go to the grocery store and not collapse for 2 days when done.
    There was such a marked improvement in all 3 of us, that our doctor now says, yes, we have Celiac disease. However, because of the way the medical system works, he will not give us an actual diagnosis unless we go back on gluten and get the endoscopies. He said he’s afraid HE would get in trouble for giving us the diagnosis. I said no, it isn’t worth it. You couldn’t PAY me to go back on gluten! Oh, did I mention my mom had a gene panel run, and she has FOUR copies of the Celiac Genes. Most people who develop Celiac, have one or two.

    1. Jen

      Four copies of the celiac genes. Whoa. Yeah, with the symptoms you describe, there’s no doubt the three of you have celiac. So glad you’re feeling better! It’s truly life-changing, isn’t it?

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