No Longer Feeling Isolated as Someone with Celiac

Or: Suddenly Being the “Go-To” Person for Gluten-Free Living

I apologize if this seems to be a ramble…because it is.

When I was diagnosed with celiac disease almost three years ago, I felt very alone, confused, and frustrated. It’s bad enough that I oftentimes feel like the odd man out at any social gathering (or in public for that matter), something I have learned to embrace long ago since I have never wanted to be a cardboard cut-out of Jane Normal, and having a severe dietary restriction made me feel even MORE out-of-the-norm.  It was a whole new way of life I had to learn very quickly, and there was no easing into it. You just had to jump in with both feet. Luckily though, I have been extremely fortunate to have so many wonderful friends and family who make sure my needs are met, and for that I am grateful! They sort of helped me parachute down into this new way of life, and trust me, it’s not something that is easy to do by yourself. For the longest time I felt pretty isolated…but I have noticed things are changing.

Lately I am finding myself being approached by friends, acquaintances, and even strangers in the gluten-free section of the grocery store…with questions about gluten-free living, cooking, what you should or shouldn’t do. People constantly say “I thought of you the other day when I saw *insert gluten-free reference here, whether it’s a menu, product, bakery, etc.*”. I have become the go-to for GF living in my social circle. And you know what? It feels GOOD to fill that role.

Erin Smith, a wonderful GF  blogger, had posted a great tweet recently that really struck me: “A Celiac Disease diagnosis isn’t a death sentence, it’s a life sentence. What other disease can you treat with food? #thinkpositive #celiac”  Her words were SO meaningful to me because of the truth they contained. I love the phrase “life sentence”, how awesome to look at it from that perspective! She’s right. It’s wonderful to live without pain, it’s wonderful to have a normal life with just a few tweaks beyond the norm. It may sound strange, but having a disease that can be treated with NUTRITION, and not pharmaceuticals, is really a blessing in disguise!

I know several people who adopted the GF lifestyle because it was a last resort to trying to figure out what was wrong with them. Some have never been tested for celiac due to factors like lack of insurance, but are amazed at how good they feel on a gluten-free diet…and never looked back. Undiagnosed or not, they feel great, and I was so happy to be able to help them along in their journey. It’s nice to not feel alone suddenly…it’s great to share GF tips, recipes, and treats with others.  It’s also nice to talk with others who felt they couldn’t talk to ANYONE about their issues, because they felt no one would understand them, and lately everyone feels the need to throw in their snarky 2 cents about the gluten-free “fad” and how it will fade in time to something else. No one understands the severity of celiac and gluten-intolerance…until it happens to them or someone they know or love (I know it was that way for me years before I knew or understood ANYTHING about gluten). Then suddenly the perspective shifts and they have a newfound respect for the lifestyle. Changes are happening, awareness is being created, and more and more people are adopting the lifestyle and feeling better than they ever have in their lives. It’s really an exciting time!

But I digress…I realize this is a ramble. My main point is that I am glad I can help others. I’m glad people feel they can come to me with questions about gluten-free living. I am glad the GF community is expanding, thriving, and embracing one another. It feel goods to be part of something like this, where I can feel connected to others with a common thread, and in doing so we are all helping one another heal, adjust and grow.

I’m no longer alone, and it feels PRETTY good to say that!


The Importance of Being Earnest (with Gluten Warnings)

*OK, you can stop rolling your eyes at my not-so-clever title*

Believe it or not, I recently managed to gluten myself TWICE within 72 hours, and it was all due 100% to my own negligence and the fact that I was in denial that cross-contamination disclosures weren’t a big deal. I was totally wrong, and it’s completely my fault. I ended up missing a crucial 20-mile training run and spent my entire Sunday afternoon on the couch, shotgunning episodes of Downton Abbey and laying about miserably.

Having been diagnosed with celiac disease in spring of 2011, you would THINK that by now I would know better. You would think by now I would be well past rookie mistakes. You would think that after my disastrous marathon in Michigan I would be on my toes and 100% alert and aware.

Nope. I’m an idiot. And it’s completely my own fault.

Before getting into the specifics, I wish to preface this by saying how appreciative I am of stores and food manufacturers for being very specific with their allergen disclosures. I absolutely love places like Trader Joe’s, but know quite a bit of their goods have cross contamination potential (and they are very specific with disclosure). I will never stop shopping there (they carry my very favorite natural peanut butter!), but I know that I have to step up my guard or pay serious consequences. Both glutenings were due to my own negligence, and no finger-pointing or blame is aimed at anyone but myself.

Glutening Number One took place during a Saturday night dinner that we hosted for some good friends; I had gotten some homemade veggie burgers from the Fresh Market section of Wegman’s. Perusing the ingredients I saw that everything was safe, but then a warning beneath that they may contain traces a laundry list of possible allergens due to being prepared in a shared area. I thought about this warning and realized the same exact warning was on their prepared sushi, so shrugged it off with a flippant air of dismissal. I ate sushi from Weman’s dozens of times with no issues as long as I knew what to look for, so I assumed the warning was a very small threat with zero consequences.

I was quite wrong, and within an hour or so I spent the rest of my evening in pain; I was reminded of the old paper mache volcano I made in grade school with the baking soda lava flow…it felt that awful. I was feeling quite irritable and frustrated that I ruined a Saturday night by not taking the warning seriously. My 20-mile run that was scheduled for the next morning was completely out of the question, and it really threw a wrench into my training.

Glutening Number Two occurred that Monday afternoon when I purchased some hummus from Trader Joe’s. I had done this dozens of times in the past, always being sure to examine labels ahead of time before checking out. Until that day. I bought a hummus that was a four-flavor variety tub, and sampled it when I got home with some tortilla chips. Within fifteen minutes my stomach was outraged and quite mutinous; I tried to lay down for a short while but the severe pain kept me tossing and turning restlessly. I was reminded of the years I spent as a child going through this exact same kind of agony, and started to trace my steps to the source of the discomfort. Something clicked resolutely in my brain and I went back to check the label on the hummus (that I had previously disregarded) and saw that it was processed in a shared facility with wheat products. I was furious at myself for being so careless. Fortunately I was able to take some activated charcoal tablets with a lot of water, and within an hour or so the symptoms had abated to a mere whisper. But the effects lasted throughout the entire week and even into my weekend that was spent at the family shorehouse.

Two times I glutened myself accidentally due to my own  carelessness. Two times I easily could have avoided it, the first time because I decided to disregard it, the second time because I forget to check and assumed the product was safe like the others I had purchased in the past.

A while back I wrote an entry about never letting my guard down, and I completely and totally failed to follow my own advice. So what does this mean for me in the future? Has a lesson been learned? I certainly think so, but I think it’s an important message to reiterate ad-nauseum (no pun intended!).

If you have celiac disease: never, ever, EVER consume a product that may have shared equipment or was processed or stored in a facility that also processes products with wheat or gluten. The merest hint of cross contamination is enough to send my health into a tailspin. Read labels with a microscope. Check and double-check. Ask questions. Don’t be careless. How many times will I have to accidentally gluten myself before this lesson sinks in and is lodged permanently in the recesses of my brain?

I think it set in earlier this week. I had a strong craving …I really wanted some avocado rolls at lunchtime. I went to three different stores and all three times there was a warning about wheat (and sometimes barley was actually IN the prepared rice, much like how it is prepped in Japan). Was the warning merely about the soy sauce packet that came with the rolls? Is that what it meant by “CONTAINS WHEAT”? I wasn’t about to find out. Irritable and disappointed, I simply went without that day.

To be blunt, having celiac sucks. Going without when you have a major craving also sucks. Being hungry when there are no other options ALSO really sucks. But the consequences are not worth a moment of pleasure in the end. Having your immediate cravings mollified isn’t worth 7-10 days’ worth of side effects, and it also can affect years’ worth of internal healing.

When I hear about celiacs who cheat because they “can’t help it”, it devastates me. They know it hurts, and the pain is worth the pleasure. They are definitely gluttons for punishment, but have no idea how much more damage could be going on internally besides the immediate side effects (for me, seriously annoying things like canker sores, blurred vision, dizziness and extreme fatigue on top of loads of GI distress). It is not worth it, nothing is worth your health.

I will not allow myself to be glutened again by my own hand. I can only hope my message can be passed on to you.

For Further Information on finding gluten in labeling:
What Terms Mean ‘Gluten’ on Food Labels?