WIAW + My Celiac Story

G’morning, everyone!

Remember when I said that I’m easily amused, and that small things make me inordinately happy? Well, that phenomenon is at work today: I’m incredibly excited about the fact that it’s May. May, you see, is one of my favorite months — it’s when everything is in full, spectacular bloom, the weather is gorgeous, and everybody just seems especially happy.

I also think I must associate May with good memories — graduations, finally leaving the soul-shredding job I had when I first moved to DC after college, being in the home stretch of my year in Jerusalem before returning not only to the U.S., but to my beloved Colorado — because I always feel like good things are just around the corner whenever this month rolls around.

Interestingly enough, May is also Celiac Awareness Month — and, coincidentally, it’s also the month in which I made what I refer to as my Celiac discovery. Five years ago this month, we figured out one of the biggest, most important factors that had been contributing to a lifetime of chronic health problems: Celiac Disease.

Now, in order to start at the beginning, let’s rewind to the mid-80s: I’m sitting on the couch, watching Thundercats — and oh, does my stomach hurt. That stomachache was a constant companion for me, and some of my earliest and most vivid memories involve stabbing abdominal pain. We saw a bajillion doctors, but they all said the same thing: we don’t know why this is happening. Nor could they figure out why I had such severe allergies that I started getting allergy shots when I was 3 — and they had no idea why I developed a walloping case of asthma, either.

Fast forward to 1997: my stomach pains had only gotten worse with time, and I asked my GI doctor if he thought a gluten allergy could be at the root of all this gastric insanity. My BFF’s mom had a gluten allergy, and she said her symptoms prior to diagnosis had been largely the same as mine — so I thought, to quote Bill and Ted’s Excellent Adventure, that strange things could be afoot at the Circle K.

image

My doctor’s response? “That’s just a bunch of new-age bullshit. There’s no such thing as a gluten allergy.” After decades of testing with no real diagnosis other than the catch-all IBS, I resigned myself to the fact that this was just how life was going to be.

Fast forward again to 2002: I was 21, and my boyfriend at the time noticed a weird bony nodule on the top of my right foot. A few weeks later, an orthopedist told me it’s a bone spur — which means I have advanced osteoarthritis in my feet. I was relieved to know that it wasn’t some sort of heinous foot cancer (confession: I think everything is a sign of cancer and my impending demise. Headache? Cancer. Achy knees? Cancer. A sneezing fit? Cancer.), but then it hit me: what sort of active, normal-weight 21 year old gets arthritis? It was added to the growing list of my unexplained, mysterious health conditions.

Fast forward one last time to 2008, when my dad was diagnosed with Celiac Disease. As my parents learned more about it, they both realized: Celiac would explain almost all the chronic health conditions that had dogged me throughout my life.

Celiac Disease
Image Source: NY Times

 

I was in grad school at the time and couldn’t get my school’s insurance to cover formal testing, so my mom encouraged me to just go on a gluten-free diet for a week just to see how I felt. (It was basically the starving grad student’s scientific method: isolate the variable (eating gluten) and run an experiment on myself.) I loaded up on some GF staples, and to my surprise, within 48 hours my symptoms started to alleviate. My stomach felt better, my feet weren’t stiff when I woke up each morning, and the brain fog I’d had all my life started to burn off.

I thought that maybe it was just a fluke, so I re-introduced gluten — only to get sick as a dog almost immediately. At that point, I figured it couldn’t hurt to go fully gluten-free. While I didn’t have a formal diagnosis, I could see how different and how much better I felt without gluten in my life. As I learned over the course of the next few months, it turns out I’m uber-sensitive to gluten; any time I’ve accidentally ingested even a tiny bit, I get spectacularly ill and horrible indignities ensue.It took a while for me to feel comfortable with all the ins and outs of eating strictly gluten-free, but I eventually got the hang of it. Last year I even started experimenting with gluten-free baking (from scratch, no less!), and I was largely thrilled with the results. Now, five years after my initial GF experiment, I’m tremendously grateful that my dad’s diagnosis led to my own Celiac discovery. He and I are both much, much healthier now — and although I do miss various glutinous foods, I’ll gladly surrender them in order to feel better.

People often ask what I’m able to eat while on a strict GF diet, so I figured I’d use What I Ate Wednesday — hosted by the lovely Jenn from Peas & Crayons — to highlight some of my favorite GF foods.

Peas and Crayons

I always start the morning with coffee and gluten-free toast (my favorite brand is Rudi’s Multigrain Bread — and, to my immense happiness, you can find it at Costco):

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Other favorite GF breakfast offerings include omelets, quiches, and pancakes.

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DSC00823-001Lunches and snacks (for this week, at least) have included curried lentil and rice soup (I’ll post the recipe for this later this week!), cantaloupe, apples with almond butter, Greek yogurt with Udi’s GF Vanilla Granola, Van’s crackers with cheese, and Pamela’s Whenever Bars.

Our dinners this week have also run a wide gamut — while we have some favorite go-to recipes, I also like to improvise. Our favorite recipes include lasagna made with GF lasagna noodles from Tinkyada:

Za’atar-crusted chicken with Greek salad (both recipes come from the Nigella Fresh cookbook)

This week’s improvised recipe was inspired by French onion soup, which I was craving like woah last week. I added caramelized onions and low-fat Swiss cheese to baked chicken, et voila:

DSC00833-001Lemon, oregano, and white wine roasted chicken with baked potatoes, caramelized onions, and salad:

Per the usual, though, my favorite thing is dessert. Organic strawberries were on sale at Whole Foods this week, which made me squeal with delight in the store (no, fellow patrons, I don’t have Tourette’s — I’m just super-expressive and easily amused). I combined them with chocolate almond milk, which might have yielded the best dessert concoction this side of self-serve fro yo. It’s not the prettiest thing ever, but gawd, it’s delicious.

If you’re new to the world of eating gluten-free, there are some awesome resources out there — one of my favorites is The Gluten-Free Goddess, who develops some astonishingly delicious recipes. I’m also building my own recipe page for the dishes I create on my own, so let me know if there are any particular dishes/foodie genres you’d like to see here, and I’ll gladly whip something up. πŸ™‚

With all that being said (good Lord, this post is long), have an awesome Wednesday! Questions for y’all:

If you’re eating gluten-free, what inspired you to do so? Are there any gluten-filled foods you really miss? If you could take any gluten-filled food and make it GF, what would it be?

24 thoughts on “WIAW + My Celiac Story

  1. Caitlyn May 1, 2013 / 12:35 pm

    that was so interesting to read. thanks for writing this post out, lillian!

  2. jessielovestorun May 1, 2013 / 1:14 pm

    … and after reading your story, it just breaks my heart. Think about it; What do doctors do first when someone comes in with a pain or sickness? They throw medicine on top of medicine and more medicine at the person instead of trying other alternatives to fix the problem, or at least narrow it down. It’s horrible what the health care (which the US spends the most on out of any other country) is these days 😦 Glad after all that time, you finally were able to figure out what was the cause!

    • Lillian @ Seize the Latte May 2, 2013 / 1:24 am

      I completely agree, darlin’. I’m always stunned by the reflex to medicate a problem instead of looking into what might be causing it in the first place — this has become the crux of the health care system here. That’s part of why I love IIN: learning to get to the root of the problem will be a huge help for people! πŸ™‚

  3. Alix May 1, 2013 / 1:23 pm

    Hey, I love your blog, and I feel the same way about May. It’s like the Earth’s triumphant fist-pump after making it through winter.

    So your questions – I shall give them a stab. My husband discovered Paleo when he wanted to lose some weight. We both gave it a shot and have loved it, and it involves eliminating gluten. We’re pretty 80/20 about it – we’ll have some ice cream or a sugary cocktail on occasion, and we’re fine. But we’ve found that whenever we have gluten, it makes us feel so bloated and crampy and rotten (exactly how I always used to feel after a “big meal”) that, tasty though it may often be, it does not contribute to our enjoyment of life. So we’re pretty faithfully gluten free – no 80/20 there, thankyouverymuch. I do miss a nice, crusty loaf of sourdough, though. If I could make that GF the way I used to make it with wheat, I’d be a happy girl.

    • Lillian @ Seize the Latte May 2, 2013 / 1:21 am

      Thanks, Alix — I’m thrilled to know that you’re reading in far-off lands! πŸ™‚

      So, first and foremost, “Earth’s triumphant fist-pump” might be the best description of May that I’ve ever heard. I love it — permission to steal it, por favor?

      I’m also really glad that going GF has worked so well for you guys. I’ve heard a lot of good things about Paleo, and although it’s not quite right for me (quinoa, rice, and lentils are my homies), I know it works beautifully for a lot of people. And hey, anything that gets people away from processed foods and into produce is something I can support! πŸ™‚

      And oh, sourdough. Brandon loves the stuff, and it seriously bums him out that he can’t have it more often. If I could figure out a way to make it GF, I completely agree that it’d be sublime. Must. Figure. It out.

  4. Melissa May 1, 2013 / 3:02 pm

    Everytime I’ve been that it’s May 1st (a surprising number of times for it only being 8 AM over here), I get so so excited. We’re finally getting sun! Just a great month all around.

    I loved reading about your story – my senior year of college I had a roommate who had Celiac, and it was definitely tough for her on a student’s budget. If I was gluten-free, I know I’d miss a good cold beer and fluffy fancy types of bread the most. I’m so glad that more places (at least around here) are offering gluten-free options, especially college campuses!

    • Lillian @ Seize the Latte May 2, 2013 / 1:12 am

      It’s awesome to know that college campuses are starting to carry GF foods — I know I would’ve been totally sunk if I’d been diagnosed when I was in undergrad! (Granted, I finished college 10 years ago, so it’s been a while.)

      The GF foods definitely do a number on one’s budget, that’s for sure. It’s especially hard when on a starving student budget — so needless to say, I’d pilfer from my parent’s GF foods whenever I visited them. πŸ™‚

  5. Socorro Toro Piontka May 1, 2013 / 3:10 pm

    OMG it was like reading my own story. Thank you so much for sharing this. I had tears in my eyes but then I began to laugh when I saw all your wonderful dishes. I’m new at this. I just got my diagnosis last week. It’s mostly difficult for my fiancΓ©e. It has not been easy for him to accept the changes I’m making in my life.

    • Lillian @ Seize the Latte May 2, 2013 / 1:10 am

      Oh, do I ever feel for you! I vividly remember being in your shoes, and I know it’s scary, overwhelming, and difficult at first. Gluten is in everything, and the initial weeks after diagnosis can lead you to feel like life as you know it is over. I promise that it gets better!

      There are some great gluten-free products and resources available now, and you’re definitely not alone. I’d recommend seeing if there’s a local Celiac support group where you are — the one in my hometown was key for my Dad.

      Amazon also has a full range of GF products (here’s the link: http://www.amazon.com/Gluten-Free-Foods-Diet/b?ie=UTF8&node=2204829011), and most grocery stores have downloadable lists of all the foods that are GF.

      As for specific brands, King Arthur GF Flours are delicious, Rudi’s GF Multigrain Bread is fantastic, and Glutino products are good as well. The two best rules of thumb are 1) whole foods — produce, meat, nuts, quinoa, etc. — are naturally GF, and 2) when in doubt, don’t eat it.

      I’m so glad you were able to get a diagnosis and that you’re on your way to being healthy — I know it’s hard, so know that you’re in excellent company with this!

  6. musingsoftheamusingmuse May 1, 2013 / 3:10 pm

    I am in the same boat – docs didn’t believe I had a gluten issue last year, they ran a blood test just to “humor” me and it came back negative, but all the symptoms still persisted. So then they told me to eliminate gluten in addition to dairy and pow! Problem solved!

    I met with a dietician and SHE is the one, who, when going over my list of symptoms and long-term ailments, looked up each one and there were reports of them all associated with Celiac. She chuckled and said, “I’m not a doctor, and I can’t diagnose you – but I’d say with 99% certainty that YOU have Celiac disease.”

    No gluten – no problem. It feels awesome to feel awesome!

    • Lillian @ Seize the Latte May 2, 2013 / 1:00 am

      Wow — I’ve never heard of a nutritionist diagnosing (I use air quotes with that, since she said diagnose you) Celiac, after blood tests come back negative, but it makes perfect sense.

      I’ve also heard a lot of stories about peoples’ blood tests coming back negative, but they have debilitating symptoms when they’re eating gluten, so I’m skeptical about the accuracy of the test.

      No matter what, though, I’m glad you’re felling better! πŸ™‚

  7. Alex @ therunwithin May 1, 2013 / 3:36 pm

    this is actually super interesting to read because my celiac discovery was similar in some ways but different in others. I always had digestion problems but just what my family considered bearable. It wasn’t until my body seriously started rebelling in high school and college that doctors were included. It got the worst my first year in college (rash break out all over my body, extreme dehydration because of vomiting and diarrhea) sadly at that time though celiacs wasn’t a big thing so it took a while to actually diagnose me.

    • Lillian @ Seize the Latte May 2, 2013 / 12:58 am

      It’s amazing how long it takes for people to get their diagnoses. I’m glad you got the diagnosis, though — the rash and tummy troubles are ghastly, and I’m so glad you’re on the road back to health!

  8. aftertheivyleague May 2, 2013 / 2:09 am

    Absolutely loved reading this post! Your health struggles in the past sound awful, arthritis in your early 20’s? And that’s absolutely nuts that the doctor told you it was some new-age mumbo jumbo. My issues with gluten didn’t start until my early twenties, and they were sudden. I got tested for Celiac’s with a blood test and it came back negative. The doctors wanted to do more tests, but I went with my instincts and just decided to try out a GF diet on my own, like you. Eliminating gluten from my everyday diet turned out to be the best decision I ever could have made. I’m not nearly as sensitive as you, but eating it on a regular basis wreaks havoc on my digestive system. It’s such a common allergy, I bet that doctor is kicking himself now!

    • Lillian @ Seize the Latte May 2, 2013 / 2:16 am

      It’s amazing how many people have negative blood tests but are seriously symptomatic — it makes me question the reliability/accuracy of the blood tests! I’m so glad going GF worked well for you, though. It’s awesome to actually feel good after feeling crappy for so long, or in your case, suddenly feeling awful! πŸ™‚

  9. Robin May 2, 2013 / 1:05 pm

    Interesting story, and powerful. I’m glad you finally found the problem and feel better. I am not gluten-free, but I have a child who has a peanut allergy (super-duper-severe), so we buy a lot of gluten free foods because many of the brands are nut-free also. I find when I talk about the nut allergy thing, people don’t take it seriously either, or like your Dr, think dismiss it as just some fad, lifestyle choice…Gluten is interesting though, and dairy too…I have heard of many people eliminating both and feeling so much better. I have thought about it, but basically do homemade everything, so the fact that I don’t buy anything majorly processed I think keeps us healthy. Anyway, I can ramble…sorry ! thanks for your post!

    • Lillian @ Seize the Latte May 2, 2013 / 2:07 pm

      Thanks, Robin! I’ve heard lots of stories about people who don’t believe how severe peanut allergies can be, only to then wind up sending someone else’s kid into anaphalaxis. (Whenever I hear these stories, it’s a serious *headdesk* moment.)

      That said, I’m glad you’re able to do so much home cooking. It sounds like it’s the perfect solution both for your son’s allergy and your family’s overall health!

  10. Meredith May 2, 2013 / 1:32 pm

    I loved learning about your celiac discovery! It seems like you’ve adapted to being gluten free so well. I’m so glad you followed your instinct and not the doctors! Your day of eats looks delicious. I’ve got my eye on that lasagna…yummy!

    • Lillian @ Seize the Latte May 2, 2013 / 1:46 pm

      Thanks! It took a while to adapt, but once I got the hang of it, it became much easier. πŸ™‚

  11. Kaitlin May 2, 2013 / 8:13 pm

    You know, I’m not gluten intolerant but have found myself eating less and less of it. It’s interesting to note how my body feels. I love dessert too πŸ™‚

  12. Michelle @ Run Kiwi Run! May 7, 2013 / 5:53 am

    I’m another negative-blood-test but struggle with gluten person! I have a family history of celiacs disease and I also have an egg white allergy… Things get complicated but cutting out the gluten made such a difference to my energy and my stomach pain/issues.
    I’m heading to the states for a three week holiday in July, I’m glad to see you have some tasty products available (I live in New Zealand which is usually pretty easy for GF people)!

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