Today's guest post comes to us from my husband, who married me pre-Celiac diagnosis and has been there through it all. We thought it would be helpful to share this with family, friends, and loved ones dealing with someone who has been diagnosed.
Gluten and Tolerance
Celiac is a disease where the body rejects something innocuous, punishing the innocent protein as though it were a noxious interloper. Celiac is a disease where the mind rejects the innocuous as well, making normal affections equally unwelcome. Much is written for Celiac sufferers on how to deal with the disease’s physical ravages. This is an article for those who love someone with the disease, a psychological predicament with no nicely labeled solutions at the grocery store.
My wife had dealt with mysterious stomach issues on and off for over ten years. We met during one of the off periods. The online dating profile where I met her was understandably silent on the subject of intestinal distress, and it wouldn’t become part of our daily lexicon until many months later after the disease came roaring back. Like many who find themselves in a relationship with someone who develops an illness, I found myself thinking “I didn’t sign up for this.” But I had a past bout of stomach issues myself, and with even the barest minimum of empathy, it was easy to overlook the issue, especially with the certain prospect that, no matter how severe it got, this, like all things, would pass.
This was followed by years of dealing with the mysterious on-and-off nature of the illness. There was no obvious trigger, which sowed the seeds for an intense and wholly justifiable paranoia that the culprit could be everything and anything. Surprisingly, for most of this time a gluten intolerance was not considered. Indeed, my wife ate a lot of bread on the assumption that most people would make, that it was easy to digest and therefore safe. I began to believe the symptoms were a product of the stress itself, a diagnosis she bristled at. We were now at odds with each of us fostering our own Cassandra complex, each believing we had a solution that neither one could accept. Finally my wife’s researching led her to Celiac Disease, something which even I conceded fit the symptoms better than anything else. Two gastroenterologists and one blood test later, we had our diagnosis. Happily ever after, right?
At first, the diagnosis, while vexing in terms of its restrictiveness, seemed like a blessing. At last the offending trigger was located and could be expunged from her diet. The symptoms would cease, the stress would abate, and the unwanted Mrs. Hyde would disappear. But the paranoid Mrs. Hyde was not about to let Dr. Jekyll return to the marriage any time soon. What was once fear of the unknown transformed into distrust. Thanks to the unwarranted popularity of the gluten-free fad diet, retailers and restaurateurs alike were all too happy to promise gluten-free food. But without working at the factory, or inspecting the kitchen, could she really know whether or not the food was accidentally tainted? Could she even trust her family members to follow the cross-contamination commandments?
Distrust now turned to resentment. Worst of all, I was the only other person at home. Even though my ability to cook gluten free was generally getting high marks, I was the only recipient available for every ill temper, every crying fit, and every sleepless night. More and more Mrs. Hyde was waiting for me when I got home, and I found myself getting angrier and angrier. Sometimes that anger would be directed at the disease, not just Celiac, but lactose intolerance, and peanut allergies, and every other condition that evolution should have eradicated by now. Sometimes the anger was directed at Science with a capital “S” for its lack of progress on a cure. Had I been less agnostic, I’m sure some vitriol would have made its way to God. Often there was anger at myself for a host of failures – failure to help find the diagnosis sooner, failure to do better as a gluten-free partner, failure of understanding, and failure to quiet the growing rage in the first place. Worst of all, sometimes I was angry at my wife herself. Try as I might to imprison it, some small fraction of the total rage would still erupt in unexpected places.
Intimacy suffered, occasions and vacations were scuttled, and even the desperate gestures I was tossing out to keep Mrs. Hyde at bay were losing efficacy. Flowers only brought a temporary smile, there and gone. Gluten-free treats were a decent calmative, but they brought more pounds and with them more unneeded insecurity and stress from a world of ordinary relationship issues that were no less on the backburner than with any other couple.
I am told there is a mourning period for Celiac patients wherein they grieve the loss of glutinous treats. That part turned out to be easy. What is not stated is the mourning period where one grieves the loss of the ordinary carefree parts of being in love. The occasional fancy night out is thwarted by the hypothetical failures in a restaurant kitchen, and the fear that an evening concert or movie will last too long with a bathroom too inaccessible. The occasional night in is fraught with the peril that your friends’ culinary skills are equally suspect, and that if the Celiac symptoms do strike, that the restroom trips will prove embarrassing. The list of acceptable safe activities grew smaller, and with the loss of recreation, Mrs. Hyde won another battle.
But if you were beginning to think that this column would be all gloom and doom, think again. While the Celiac diagnosis drew down a world of darkness, it also shone a light on a pathway through. And our path was not the only one. What the Celiac diagnosis took away, the Celiac community gave back. Where Mrs. Hyde threatened to isolate us in our home, it turned out there were millions with the same condition, working hard to throw those doors back open.
And on the personal side, rare is the love that goes untested. All married couples pledge “till death do us part” and those last few decades are replete with conditions far worse than Celiac, and that’s if you’re lucky. Few are those who can test those waters, and fewer still are those who learn to navigate them before they become adrift. Because ultimately it did not all end in tears for us. We found joy in the challenge of cooking and inventing gluten-free cuisine. We found purpose in sharing our story and our passion for increased awareness. We found better communication on the other side of those spats that seemed so petty and insignificant in retrospect. We found understanding and teamwork in tackling the condition together. And most of all, we found love for each other, just where it had always been.
Loving someone with Celiac, as it turns out, is a condition of its own. But while Celiac is an incurable intolerance, tolerance for the person with Celiac is limitless, abundant, and free. Love without the hard stuff is empty. When I look back now on what I did or did not “sign up” for, I did not sign up to coast. I signed up to be a better man, not for myself, but for her. So if you find yourself in a relationship (lovers, family, friends, even co-workers) with someone with Celiac Disease and you are struggling, remember what it is you’re struggling for. Fighting is miserable. Fighting for something is the only reward that really means anything.