As more and more people try gluten-free diets, awareness of Celiac Disease is increasing - but ironically so is the risk of mis- or under-diagnosis. It's a risk that hit home for me when a child in my extended family was diagnosed with the disease, making me wonder if my own gluten intolerance might be something more.
The thing is, short of going back to a gluten-FULL diet, I've lost my chance to find out.
Going back at least as far as college, I'd long suspected that there was something up between me and wheat. Bagels - every New York City college kid's staple - hit my gut with a thud. Pasta on the other hand was not just "good", it was addictive - leading me to handily put away 1/2 a pound or more on my own, in a single sitting - only to feel starving afterwards. And Kit Kat bars, I found, could easily sub in for whole meals when I was in a rush - because I felt so sick after eating one that I no longer felt hungry. And that was key because otherwise, I felt hungry all the time, despite eating enough for someone twice my size - and then felt just awful after every meal.
You'd think I might have noticed that something 'wasn't normal.' Or maybe that my doctor might have said something?
And yet it wasn't until some three decades later, in a desperate attempt to help the very ill baby boy I had adopted and was nursing, that I even considered going gluten-free. It's not like it was my idea, either - when you're holding a scrawny, screaming baby so stiff with pain that he stands on his own two feet at four days old, you'll try anything. So when his doctor told me that removing the gluten (along with all the other 8 most common allergens) was worth a try, I gave it a go. Logically, since he was not a child of my physical creation, no one even raised the question of whether I might have any "gluten issues" of my own.
And yet, I got lucky. Within weeks of taking all top 8 allergens out of my diet, he got healthy - and over the next several months, so did I. Health issues I didn't even know were 'fixable' and that doctors had long struggled to explain simply fell away, along with some 30+ pounds. Hunger was reduced to something I felt before a meal - not before, during and then after the nausea went away again. I felt like I'd won the lottery.
It was about 18 months after this that one of the kids in my family clan was diagnosed with celiac disease, some 5 years after she'd first started complaining of chronic stomach pain and G/I upset. Sadly, according to the National Foundation for Celiac Awareness, some 83% of those with celiac disease are misdiagnosed with other conditions, and on average it takes 6-10 years to get a proper diagnosis. Getting that diagnosis starts with a simple blood test - yet ironically, it only works if gluten is an active and regular part of your diet at the time that it's done.
Shortly after the diagnosis, her father got after me to go back on gluten and get tested for the disease myself - "or do you actually want to play Russian roulette with stomach cancer?"
Quickly, I dismissed his warning. Why should I put myself through the misery that was my-body-on-gluten just to get a diagnosis that I should continue avoiding gluten? After all, I was already eating gluten-free! And I felt enough better all the time that I didn't need some diagnosis to convince me to "be for-reals" about my gluten-free ways - nay, I was already a quinoa-packing zealot by then!
But then reality began to set in.
When I took gluten out of my diet, I had been working with my son's pediatric G.I. on diagnosing his stomach pain - not with my own doctors and certainly not based on any connections to my own health. I was just "following doctor's orders," trying to relieve his discomfort. For both of us, the working assumption is that we are "sensitive" or "intolerant" to gluten - that our bodies aren't good at digesting it but, unlike food allergies or celiac disease, we "don't have to worry" about cross-contact. Don't have to drill every waiter at every restaurant. Don't have to toss out hundreds of dollars worth of pots, pans and kitchen appliances. Don't have to ban gluten from my kitchen pantry - and tell our house guests (including the ones from my husband's rye bread-obsessed homeland) to check their baked goods at the door. Don't have to fore-go all those awesome "gluten-free" breads that just happen to have been baked right along-side their gluten-full brethren.
This might even be true. Hopefully it is.
But if, on the other hand, it turns out that my gluten sensitivity is in fact driven by undiagnosed celiac disease that we now know to run in my family, I could be doing real harm to myself. Left untreated, over time even exposure to trace amounts of gluten can lead to a number of other health conditions, including infertility, reduced bone density, neurological disorders, some cancers and other autoimmune disorders.
In other words, much like food allergies, celiac disease doesn't just require an annoying diet, it plays for keeps.
A few months ago, my own G.I. did instruct me to try reintroducing gluten into my diet for a few weeks so that she could test me for celiac disease. I tried, really I did. I went into it with the best of intentions and a game plan to pig out on all those gluten-full foods I'd so missed for the last several years.
But honestly, I was so hungry and in such discomfort that instead of approaching each day with "please pass the donuts!" I approached each day with "how much of the donut can I pass on and still have the test work." In the end, I walked away with a negative diagnosis - but without the accompanying peace of mind because I just wasn't sure that I'd eaten enough gluten for the results to be real.
So please, learn from my mistakes.
If you've been hearing about how going gluten-free has helped so many other people and are becoming suspicious of your own relationship to gluten, do yourself a favor and go get that blood test before you try anything on your own.
Take it from me - if you don't, you'll always wonder.
This blog was first published on freedible in May, 2013. To find FAQs and blogs about celiac disease and gluten-free recipes from our community, visit www.freedible.com/celiac-disease.html.