When we were celiac veterans of two months, Taft wrote about our short experience living gluten free on his blog, McCTaft.com. We’ve posted his original comments below, along with some updates. His purpose in writing this, to help gluten-free “newbies” like Heidi, is a big part of what Red Checkered Tablecloth is all about.
A couple [now seven] months ago, my wife was diagnosed with celiac disease. When she eats gluten (a protein found in wheat, rye, and barley) her body reacts to it by attacking her digestive system. Yeah, not pretty.
Approximately 1% of Americans have celiac disease, similar to the number with a peanut allergy.
Just to clarify: that means no wheat flour, no regular pasta, no Domino’s, not even most chicken noodle soup. Even some salsa brands and spices have traces of gluten in them. In the short term, gluten won’t kill her, but long term, it’s blocking nutrients from reaching her body. Before celiac disease was identified, people who had it probably just faded away until their body had nothing left to give. They could effectively starve to death while eating. [At least, that’s our best guess: since they’re already dead, it’s hard to know for sure…]
Thankfully, that’s not the case today. Now that my wife and I are gluten-free novices of a few weeks [now 7 months], we’ve learned about the options available to someone with celiac disease. Dozens of websites cover celiac, from Celiac.com to GlutenFree.com. (Supposedly over 20% of Americans live gluten free, by choice or out of necessity.) One of the things we both felt was lacking in many instances, however, was a first year look at celiac disease. This isn’t to criticize the dedicated bloggers and other professionals who maintain online sources–they’re doing a great job! Most of them, however, are looking at it from either a doctor’s viewpoint, or a gluten-free veteran of two or more years. I’d like to give someone who just found out they have a gluten problem the perspective of a spouse who’s trying to support a gluten-free newbie.
- My first reaction was, “OK, now we know why you’ve been feeling terrible. Great! We got this. Umm…where do we find gluten free flour?” Honestly, the first couple days I was in macho “we will destroy you, gluten!” mode. After about a week, I realized that it’s hard to avoid gluten. Anyone who says otherwise is kidding themselves. The stuff gets put into all sorts of places! At the same time, however, I realized that even with the baby steps we’d taken, my wife felt better. So, don’t give up. It does get easier. [After 7 months of gluten-free living, I can still say that! It’s not “easy” yet, but it’s definitely easier than it was on weeks one and two. Gluten-free baking is still confusing and tricky sometimes, but we have a much better idea what we’re doing.]
- Be prepared for your food budget to flex. (Our food budget was larger the first month, simply because we ended up shopping twice–before we knew about the celiac, and after.) A lot of gluten-free foods are more expensive, but some aren’t, so take heart! Don’t blow the bank on gluten-free brownie mixes every month, but give yourself some time to learn. Take chances, make mistakes, and get messy, to quote the immortal Miss Frizzle.
- If you’re the one without celiac, it’s tempting to keep eating gluten—and that’s totally normal. In the first few days and weeks, you may even go through gluten withdrawal. Your body may have become addicted to gluten without your realizing. For us, it’s been easier to make 90% of our kitchen and meals gluten free, rather than worry about cross contamination. Do what works. And yes, I have “cheated” at work and eaten donuts. Or cake. My wife knows, and she’s totally fine with it, as long as I’m gluten free by the time I get home. Neither of us want to give up kissing, after all! [Update: as of June 2016, our home is 100% free of gluten, and we plan to keep it that way. I (Taft) rarely eat gluten, even outside the home. Heidi has stayed completely gluten free, with very few contamination problems so far.]
- We miss gluten, dagnabbit! You probably will too. It’s an emotional connection we have with food, not just digestive. Missing foods you can’t eat is normal. Will it eventually be easier? After a month [now seven] of seeing my wife healthier (and happier), YES. But we still reserve the right to yearn for a Costco pumpkin pie. 🙂 [Update: yup, still craving Costco pumpkin pie!]
- That first time one of you accidentally eats gluten can be depressing. It probably snuck into something you never expected, like a spice, or canned veggies. Well, your body will eventually get over any reaction, and you should too. We all make mistakes. Sooner or later you should probably do some sort of digestive cleanse, but the first few weeks, don’t beat yourselves up for not being perfect gluten-free people. [Update: we’ve since completed a modified version of 100 Days of Real Food, and we’ve completed our almost Whole30 experience. Both have helped Heidi resolve lingering symptoms.]
Hopefully this helps someone. Maybe I’ll post about our “GF” experience in the future. [Yes, we’ll be posting all the time now on Red Checkered Tablecloth, so subscribe if you’d like to follow our updates!]
Now comes the medical disclaimer part: I’m not a doctor, I don’t have a medical degree, and you should listen to your doctor. (Basically, don’t be stupid.) If what I’ve written helps, great! If not, drop it like a bag of wheat flour.
Actually, don’t drop bags of wheat flour: you’ll get gluten all over the kitchen.
And now, an inspiring picture of some ugly but delicious gluten-free bread (our first loaf made at home).