Glutton for Gluten

Gluten avoidance has been touted as the panacea for everything from bloating and brain fog to depression, arthritis, and weight loss. My feeling is that unless you have Celiac Disease or true Non-Celiac Gluten Sensitivity, as I do, please go ahead and live a little. I have been struggling with my need to avoid gluten and I’m here to tell you, life is for living and not for self imposed deprivation.

If you don’t have Celiac Disease or even NCGS, but you’re still living a gluten free life or plan to, I’d like to share my journey to accept that I must be gluten free. I have done the journey for you – no need for you to repeat it on your own. But first, I will share that for me, consumption of gluten results in severe and sometimes disfiguring eczema. It’s no joke. Still, I have been back and forth on whether I need to abide by this lifestyle and have tempted fate many times.

As a Jewish woman from NYC, not being able to eat a real bagel feels all kinds of wrong. I have tried to convince myself that while I might have a true gluten allergy, there’s just no way I could be allergic to bagels. According to my parents, when I was really young bagels were the only thing I would eat. Apparently, I used to run around with a bagel hanging from my mouth as I savored that glorious gluten (I was a genius). I know my first word was my brother’s name (because my mother was always chasing after him), and I would be surprised if “fuck” or “shit” didn’t make it to my top ten at least, but I learned to ask for a bagel before I could crawl. 

When I was in my late twenties, when I first started to experience full-on GI distress and autoimmune issues, my mother went with me to a homeopathic doctor. (That doctor nearly killed me with a bullshit diagnosis of a parasitic infection for which he prescribed medicines that are so toxic they are no longer used). During our first meeting with that “doctor,” we discussed that everything was running through me, I was covered in hives and eczema, I was in constant pain, couldn’t breathe properly, and was too exhausted to function. He suggested I stop eating wheat and dairy. At that moment, my mother looked at him and said, “What then will she eat, because wheat and dairy is all she eats?” He prescribed a diet of almond butter and rice cakes. Interestingly, I went from an all-gluten diet to an all-almond diet and was shocked to later test positive for almond allergies. It seems that for those of us with sensitive immune systems, too much of anything inadvertently trains our immune systems to develop an aversion to the things to which we are overexposed. 

I’m happy to report that I can eat almond butter again, and I do still eat cheese. (I don’t care if I get eczema. I will not give up dairy. Not going to happen.) Although that “homeopathic” doctor turned out to be a quack, he was unfortunately right about the gluten. 

Because of my experiences with almonds, I kept thinking that if gluten and I just went on a break I’ll be able to welcome that devilish substance back into my life. I have tried many times with no success. I even consulted with a celiac disease expert in NYC who said that I had some markers of CD, but about as many indicators leading us to think gluten and I could be safely reunited. He suggested I could indeed have Non-Celiac Gluten Sensitivity (NCGS) and that the only way to know for sure was to put me on a gluten challenge. I was encouraged to eat all the gluten I wanted for three months. I made an appointment to revisit the doctor after this trial period would end. 

I left that doctor’s office and promptly went to get myself a bagel. When I didn’t die, I did the same thing the next morning. By the end of the week, I was eating gluten with every meal. Sandwiches! Pizza! Donuts! Knishes! Pierogi! BAGELS! During this time, I booked myself a trip to the Dominican Republic to get some beach time. The resort I went to was all inclusive, and of course the pasta place was my favorite. I was in heaven. Fuck that quack doctor who told me not to eat gluten! I wished upon him a life of having to live next door to a bagel shop without ever being able to eat a bagel. I was irreverent and pretty damn happy with myself. But then…

I returned home from my trip with some type of stomach bug. I got treated for it. I then went on a first date that was supposed to be a day at the beach. (Coney Island was the most accessible locale for us New Yorkers.) Unfortunately, there were nonstop thunderstorms, so the beach date became a spa date. We found a place with a pool and hot tub and headed that way. We grabbed lunch before hitting the beach substitute. My date bought me a vegan sandwich, because he remembered there was something I didn’t usually eat but remembered it as, “meat” instead of “wheat.” But I trusted this new doctor of mine. What person wouldn’t like a doctor who tells them to eat gluten? I downed that gluten meat substitute on a glutinous bun and off to our spa we went. 

Upon entering the spa, my date and I immediately got into the hot tub. But, it was really fucking hot. After twenty minutes in there we jumped into the cold pool and started playing with a beach ball. I don’t remember the timing of everything else that day, but it seemed that the drastic change in temperature combined with exercise, and a stomach full of antibiotics and gluten did me in. I suddenly broke out in hives from head to toe, couldn’t breathe, got sick to my stomach, and the room was spinning. I didn’t know I was having an anaphylactoid reaction because I had never had one before (and not again since). My date took me home where I was smart enough to take some Benadryl and prednisone. But when I still had hives all over my body four hours later, I decided I should probably go to the hospital. I was imprisoned there for three days while they ignored the allergy signs (although they gave me more Benadryl while I was in the ER) and then admitted me for suspicion of c-diff, despite my tests coming back negative. I also wasn’t permitted to eat anything more than Jello. Finally, a doctor came to find me in a delirious state and agreed my case was likely some type of allergy or eosinophilic gastroenteritis. He sent me home after the hospital brought me lunch. And what was lunch? You guessed it. It was a plate of gluten. 

Here’s the thing. I’m a Taurus. I don’t believe in Zodiac signs and all that shit, but I am stubborn and tenacious. So in that sense, my zodiac sign fits me very well. I’m a bull. In fact, a friend of mine once said I’m a like a Mac truck that really ought to be inoperable, but I somehow keep on going. Why am I telling you this? Because, when I went home, I resumed my diet of gluten. I don’t know exactly when I started to react, but at some point I developed a psoriatic rash. By the time I went to see my beloved doctor, he took one look at me and told me never to eat gluten again. It was that simple. 

I have adhered to a gluten-free lifestyle for years now, but I admit fell off the wagon a few times. When I had a job with a team of people based in Germany, I went to visit Frankfurt and ate waffles and pastries smothered with Nutella. I assumed that somehow the gluten in Germany was of a superior variety than “Americanized” processed gluten and wouldn’t cause allergies. I was wrong. Within two days of being in Germany that eczema crept back, and I again dropped gluten from my diet. When I moved to Philly in 2013, I was tempted by the Philly pretzel and cheesesteaks. So I ate them. The eczema came roaring back. 

Now, nearly ten years later I see bagel shops and feel nostalgic. Let’s be real. Lox and cream cheese on gluten free toast? Pastrami lettuce wrap? Chicken soup without matzo balls? Heck, matzo made of potatoes? It’s all just sad. 

When I came back from my exorcism in Nashville, where I had massive food poisoning from vegan tacos, I found that I had new aversions to corn chips. I joked with someone that I didn’t want to eat guacamole with carrots. I also started to wonder - since the most common gluten alternative was no longer in rotation, perhaps pita chips were now in? I went to see my allergist and got tested for both corn and wheat allergies, looking for confirmation of my newfound theory that I had developed an allergy to corn but had recovered from my allergy to wheat and gluten. I felt - and still do feel - that my food poisoning in Nashville was a mast cell reaction. Unfortunately, due to medication that I’m on my test results were inconclusive. But I did have a small reaction to corn and none to wheat. I bet you can guess what I did next? Yup, I ate gluten. I didn’t have pita chips but I did get a shawarma platter with a side of freshly made pita bread and I ATE IT ALL. I also had a Philly pretzel. Within twenty four hours, my skin was raging. 

On a recent trip to the beach with a friend, I talked nonstop about my failed attempt to reintroduce gluten to my world. Ever the optimist, my friend told me that we would keep looking for gluten free bagels that taste like the real thing. (She and I had recently eaten gluten free bagels and I think she was too kind to tell me they sucked.) For some reason, as my friend encouraged me not to give up, I turned to her and started singing, “Nothing Compares to You.” My rendition of Sinead O’Connor singing a tune written my Prince was my final acknowledgment that gluten and I just aren’t meant to be. 

Although the sad truth is that gluten isn’t for me and it’s definitely out for people with true Celiac Disease, that may not be the case for you. There is no such thing as a one size fits all diet plan. If you don’t have a gluten sensitivity, and by that I mean you don’t have obvious and horrible symptoms brought on my consumption of gluten, eat it. Most gluten free foods are filled with tons of fat and starch so you’re better off eating the damn gluten if you can. If you’re like me, don’t tempt fate. Avoid eating gluten, but you might be able to get away with a bit of cross-contamination (meaning you could possibly be able to eat French fries that were cooked in the same oil as the breaded, fried chicken). You do you and stick to what works for you, but remember there is no such thing as a panacea. Don’t deprive yourself if you don’t have to. If you’re in my camp and must avoid gluten, know that you’re in good company. I am pleased to report that I did recently find some of the best gluten free donuts ever made. So there’s hope. Maybe in ten years, or twenty, someone will have found the secret to making a gluten free bagel that does proper justice to the real thing. Until then, I have sworn off my life as a glutton for gluten.