The Psychological Side of Celiac

Posted: June 4th, 2012 | Author: | Filed under: Celiac | Tags: , , , , , , , | Comments Off on The Psychological Side of Celiac

The latest episode of the Hold the Gluten Podcast includes an interview with Blair Raber, with the Celiac Disease Program at Children’s National Medical Center on their efforts to address the psychological impact of a celiac disease diagnosis.

Any diagnosis of a chronic disease carries a psychological toll, but since food is so deeply interwoven in our social interactions, a diagnosis of something like celiac disease can be particularly disruptive. I’m very much a “well, that’s the way things are, now I need to figure out how to deal with it” sort of person in most aspects of my life, but celiac disease was and to some extent still is a challenge for me. And it was even more of a blow when I discovered two of my children had essentially inherited celiac disease from me. (My other children don’t currently have active celiac disease, at least.) Yes, I know we don’t control our genetic makeup, but it’s still impossible to truly escape the sense that it’s my fault they have to deal with all the medical and social consequences of celiac disease.

My son seems to deal with it in some ways more like I do. The idea of going out to eat somewhere that requires a lot of discussion with the staff, preparation, and caution can seem exhausting. Like me, if he’s placed in that situation he’ll often just choose to get something to drink and wait until he’s home to eat. That’s a big part of the reason I tend to stick to restaurants that are tried and true and really prefer ones that make it relatively painless for their gluten free patrons.

My daughter, however, is much more assertive. She will quiz restaurant staff on how something was prepared. She’ll check and double-check to make sure it was prepared with all the necessary modifications. She’s always been one who, even from a very young age, would stick up for herself and argue her case with anyone. And those traits serve her well. Of course, she was angry when she was diagnosed and it did take her some time to deal with that aspect of it. (My son, on the other hand, more quickly focused on positive thinking and moving forward.) But I think she’s done a pretty amazing job of adapting. They both have.

I’m glad there is beginning to be an emphasis on working through the psychological toll a diagnosis of a chronic, incurable disease takes on any of us, even with the best attitude and support. I generally focus on the positive because I tend to pull myself toward the positive by speaking and writing about it instead of the negative, but it’s not easy and the road has often been bumpy. In my case, my body was so severely damaged by the time I was diagnosed that as I recover, there are more and more foods that, while not provoking an autoimmune reaction, are not things that I can readily eat without adverse reactions (to put it delicately). And sometimes as that list of restrictions has grown, my positive attitude has been in short supply.

For most of my life, even as a child, I was the person who would try any food, liked most of them, and had a cast-iron stomach. People would try to play jokes on me by doing things like coating a slice of pepperoni pizza with red pepper under the toppings. (I remember that one clearly at a youth camp I once attended.) The joke ended up being on them because I ate it and loved it. Fortunately, I can still handle peppers and coffee fine. But as the universe of things I can eat has gotten smaller and smaller, it’s hard not to feel like my body has betrayed me.

Sometimes I want to scream.

I do get over it and move on. If you are going to have a chronic disease of any sort, celiac disease is not a bad one to have. I have control over the disease myself. I don’t need medicine (beyond all the things for nutritional deficiencies I suffered). And if I strictly control my diet I will keep the disease completely at bay. Yes, sometimes it sucks, but as chronic, incurable diseases go, it could be a lot worse.

On the podcast, Maureen and Vanessa also discuss the recent dust-up with Domino’s Pizza and their “sort of gluten free” pizzas. The issue was not in the ingredients, but in the risk of cross-contamination. (For instance, if you cook a gluten free pizza, but then put it on the same surface for slicing that you do gluten-containing pizzas and slice it with the same utensils, the pizza has certainly been cross-contaminated and can no longer be considered “gluten free.”) I examined Domino’s FAQ on their gluten free pizza crust offering. For comparison, I’ll offer the similar FAQ page for Mr. Gatti’s, a large regional chain. Note the differences.

While there is always a risk of cross-contamination in any restaurant without dedicated gluten free facilities, there are a long list of actions Mr. Gatti’s took that Domino’s apparently did not. When you make a gluten free order at Mr. Gatti’s, your order is handled from start to finish by a “gluten free agent” who has successfully completed the company’s training on their gluten free preparation procedures and how to avoid cross-contamination. The gluten free pizzas are cooked in separate pans. They are sliced with separate utensils in a pizza box instead of on a common surface. So while they cannot guarantee there won’t be any cross-contamination, they are clear about the training, procedures, and actions they have in place to limit the possibility. There is nothing similar on the Domino’s FAQ. Indeed, they even list as a risk something as simple as an employee handling gluten-containing dough and then contaminating the other ingredients, something that should be easy to control with strict glove-changing procedures. (As an interesting aside, when my wife was growing up, her father  was friends with a long-time past owner of Mr. Gatti’s, so my wife had a lot of interaction with their family. Just a curious bit of trivia. They both have some stories to tell.)

Personally, if I’m going to have pizza, I prefer to either make my own or get it at one of the local places, like Promise Pizza, with very strict cross-contamination procedures, knowledgeable owners, and well-trained staff. But if I were going to risk it at a large chain (well, now that I can’t really eat dairy either, that’s extremely unlikely to ever happen), the clear winner from all the ones I’ve seen is Mr. Gatti’s. On the podcast, they mention the approach Chuck E. Cheese is taking, which is also a perfectly reasonable approach. They may have been ill-advised, but the approach Domino’s took was not a good one. It made it look like they were trying to tap into a “fad diet” more than trying to meet the needs of those of us with a medical requirement for a restrictive diet. That may not have been true. They may have had nothing but the best of intentions. But that’s the appearance it created.

Finally, if you listen to the end of the podcast, I’m the “Scott” Maureen mentions. Hold the Gluten was one of the online resources I discovered shortly after I was diagnosed more than three years ago. I’ve listened to most, if not all, of her podcasts. (I can’t remember how far I went back or if all her early ones were available, but I’ve certainly listened to every podcast since then.) Even when her podcasts were just Maureen talking into a microphone sharing her struggles and frustrations, they were still helpful to me. I didn’t necessarily struggle with the same things or have the same issues, but there’s something helpful in hearing from others. (And when I was diagnosed, I didn’t know anyone else with celiac disease.) It’s important to hear that you aren’t alone. Thanks Maureen!

Now that her daughter has been diagnosed, I find myself somewhat on the flip side of that equation. Maureen has been diagnosed with celiac disease about twice as long as I have, but I’ve been dealing with having two of my kids diagnosed for a couple of years now. They are both older than Maureen’s daughter, but there’s still some common ground and I try to offer what little I can when the opportunity presents itself. The struggles when you deal with a child diagnosed with this disease are somewhat different than your own personal struggles, especially when your child “got it” from you. So I was glad to hear my little practical advice helped. It’s not much, but the celiac community is only a community to the extent we are willing to try to help each other. And ultimately, we’re the only ones who really understand what it’s like — however much empathy other people might have.


Three Years Gluten Free

Posted: April 2nd, 2012 | Author: | Filed under: Celiac | Tags: , , , , , | Comments Off on Three Years Gluten Free

This month marks the third year since I was diagnosed with celiac disease and almost two years since both my younger children were diagnosed. Our gluten free life has become so deeply engrained and automatic that it almost feels sometimes like we’ve lived this way forever. Our refrigerator, pantry, and freezer have almost nothing in them containing gluten. My wife sometimes likes bread or frozen flax seed waffles, and sometimes a breakfast cereal (hot or cold) with gluten. She will also sometimes have some nuts or chocolates in the house that are not guaranteed to be gluten free. But other than that, she pretty much eats what we eat at home.

We’ve essentially converted our lives to be gluten free. Everything we cook is gluten free. And though we tended to cook a lot before, once a food-related diagnosis enters the picture, cooking for yourself becomes a lot more important. My son has been living in an apartment at college this year and cooking all his own meals. My daughter has been learning how to cook more for herself — so much so that the morning after a recent sleepover she made breakfast for herself and her friend.

My kids are both careful and assertive about what they can or can’t eat, especially my daughter. My son, like me, sometimes prefers to avoid going out in order to skip the hassle of explaining yet again that he has celiac disease.

Family gatherings are actually the hardest social setting. At work, school, and with friends you can simply decline to eat anything you didn’t prepare or bring yourself. My kids and I often employ that approach. We can, for instance, eat before or after a gathering and just have something to drink while others eat. It’s a way of participating socially without having to worry about the food. But at family gatherings, as they’ve started to learn more about celiac disease, they want to try to prepare something we can eat. It’s an understandable motivation. In their shoes with a family member on a restricted diet, I would probably have the same urge. And it’s hard to say no in the face of intended kindness.

But there are so many hidden ‘gotchas’ when cooking for someone with celiac disease. Their kitchens and appliances are not a gluten free environment. Were they careful about cross contamination? And there are the things that are so automatic for me now that it’s hard for me to remember them all when I tell them the foods to watch for. It’s hard to say no, but at the same time it’s hard to trust that they really managed to cook a truly gluten free dish, especially since it’s not something they regularly do.

Another difficult situation these days is when my wife has been sick and people from our church have wanted to bring us a meal. (Honestly, a decade or more ago nobody ever really offered. Not sure why. Ironically, now that we can’t really accept somebody seems to ask almost every time.) It feels rude to decline, but at the same time nobody in our house but my wife could eat it anyway. And since I’m cooking, I can easily cook enough for all of us.

Adapting to this disease hasn’t been fun for any of us and I still feel bad that my children inherited it from me. But we have a good handle on it. Since we discovered my kids had celiac before they had a significant amount of damage, they will never have the chronic, severe symptoms I developed and which I’m still working to overcome. I’m thankful for that much at least. And we remind ourselves that if you are going to have a chronic, incurable disease, celiac is a pretty good one to have. You can control it completely simply by managing what you eat.

Now if we could just get the blood tests for celiac disease added to routine screenings, nobody would have to wait for a diagnosis and suffer the symptoms a lengthy delay in that diagnosis can create. Given that 1% of the population has celiac disease and most of them don’t know they have it, screening for it as part of normal physicals seems like a wise step for the medical community to take. And you can’t just screen once and forget about it. If you have the genes for celiac disease, they could activate at any time.

I hope life is treating those who read this blog well. Peace.


Fallen

Posted: May 10th, 2010 | Author: | Filed under: Personal | Tags: , , , , , , , , , , , , , , , , , , , | 6 Comments »

When I heard that Jennifer Knapp was releasing a new CD, I placed an order for it. As part of my order, I got a copy of her EP Evolving. I’ve been enjoying it for several days now. I’ve particularly enjoyed the song Fallen and, as music often does for me, it spurred the reflections that led to this post. I don’t tend to dwell too much on what a particular song or poem might have meant to the artist who wrote it. As a rule, unless they choose to explain it, I tend to assume that most of the guesses I might make are wrong. So when art evokes a reaction from me, I don’t project my response onto the artist. The song itself is hauntingly beautiful. Take a few moments to listen to it. I’ll continue with my thoughts following the song.

I was captivated immediately by the haunting opening (and repeated) chorus of the song.

Even though they say we have fallen
Doesn’t mean that I won’t do it twice
Given every second chance
I’d choose again to be with you tonight

The last line was the first to echo in my mind. I thought of my wife. Perhaps it’s because our 20th anniversary is fast approaching, but I thought of our early passionate intertwining — almost a physical force pushing and pulling us together, even if we seemed at the time to outside eyes the most unlikely of couples. And it has been a tumultuous twenty years with perhaps more challenges than some married couples face. But without hesitation, I would choose every bit of it again. I feel the enduring intensity of the line: I’d choose again to be with you tonight. There is no night where I would ever choose otherwise.

Moreover, that’s not a relative or a hierarchical choice. It’s an all-encompassing, absolute choice. If God demanded that I choose between my wife and him, my choice is clear; I would choose my wife.

However, it seems to me that people frame questions like that poorly. The problem is not fundamentally in how you answer the question even if it does seem to me that any other answer  would be morally questionable.  The deeper problem is that a God who would demand such a choice is simply not worth worshiping. I ask different questions than it seems a lot of modern Christians ask. For instance, here the obvious question to me is more direct; why would anyone choose to worship a God like that?

Sometimes people point to Abraham and Isaac, but if they are trying to prove the above, they miss the whole point of that story. Abraham knew God and knew that he wouldn’t take Isaac. He was so convinced that God was good and faithful that he even believed that God would raise Isaac from the dead if that’s where everything led. Abraham knew and trusted God more and better than I do. And in that trust, we see one of the great foreshadowings of the Resurrection.

We worship a God who loved all human beings to the uttermost, even to death on a cross. It’s other human beings who demand that we choose one love over another, never God. Love is non-hierarchical. I say that because I have heard Christians attempt to teach a hierarchy of love. Love God first. Love your wife second. Love your kids third. And then other loves in various lower hierarchies. Such systems may be many things, but they are not love. People even interpret Jesus’ modified Shema Yisrael as though it was his version of the First and Second Law of Robotics. (If you’re not an Asimov fan and miss the reference, I’m sorry. I’ll pray for you.) No, when Jesus amends the Shema, he is saying this is how you love God. You love your neighbor as yourself. That is what the Incarnation means.

I love my wife with all that I am. I totally love every one of my children — without limit. And I at least desire to love God with all my heart, soul, mind, and strength. (I’m less convinced that I actually do love God, because I know how poorly I love other human beings. But I long to love him.) Those statements are not contradictory. Love is at least transfinite if not absolutely infinite. Love doesn’t run out. It’s not a finite resource. In fact, according to 1 John 4:3, love is the essence of the uncreated who fills and sustains all creation. We will find the end of love when we find the end of God.

My take on the questions that seem to plague others thus becomes relatively simple. I am not willing to try to foist on others a God I would never worship myself. For me that’s really the end of the discussion. I will read and study perspectives and interpretations and context simply because I enjoy such intellectual pursuits.  But that’s all they are to me. I’m never confused about that.

But then the middle two lines began bubbling in that sea I call a mind as I started to reflect on the relational experiences and choices of my whole life.

Doesn’t mean that I won’t do it twice
Given every second chance

I have experienced much in my life and I have made many choices. I have experienced pain and trauma both at the hands of others and as a result of my own actions and decisions. I began to reflect on what “every second chance” might mean in the context and setting of my life.

I have many flaws and broken places and I have been prone to making poor choices and decisions over the course of my life. Even so, it’s not hard to pinpoint the single “worst” (whatever that might mean) decision of my life. The particular dark synergy of everything between us in my relationship with my second wife nearly destroyed me. At least, it came closer than anything else I’ve ever experienced — and that’s saying quite a bit. I owe my father, a close friend, and my partner and love for the past twenty-two years all that I am today. I wasn’t easy on any of them, but they still loved me enough to put the shattered pieces back together again.

So, at first glance, that choice and that relationship seems to be one that, given every second chance, I wouldn’t in fact do twice.  But things are never that simple. Without my choice to enter that relationship, I would not have my older son, my other son (in all but blood) who is the same age, my daughter-in-law, or my granddaughter. But the thread runs deeper than that. It’s unlikely, absent that relationship, that I would have moved to Austin or ever started working for my current employer. And not only does that mean I would not have my present career, but more importantly I would not have met the woman who has been my wife, partner, and friend for more than two decades now. And thus I also would not have my younger son, my younger daughter, or the particular friends I have made here over the years.

And that is far too steep a price to pay simply in order to avoid pain, however intense or shattering the suffering might have been.

Our choices and experiences, good and bad, cannot be disentangled. We are not islands. We live in a complex web of relationships and lives. There is no point in our lives where we can separate our experience then from the person we are now. Change the experience and you inevitably change the person. Moreover, you change the entire network of relationships surrounding the person.

I can go farther back in time. My choices and actions that initially led to me becoming a young teen father and husband were certainly less than ideal. (I have to specify ‘young teen’ since I was still a teenager for my second child and marriage.) I certainly made my own later life more painful and more difficult with those choices. Yet, I can’t say I truly regret those choices and actions. If I had been ‘wiser’, not only would my oldest daughter not have been conceived, but I would have likely taken a scholarship to a college somewhere and missed every subsequent relationship in my life.

But I can go farther back into things I experienced growing up, but largely did not choose. I suppose I had an interesting childhood in the same sense as the ancient Chinese curse. But remove those experiences and I would not have become the teen who made the choices that I made. It’s an intricate, yet delicate web of growth, experience, and relationship. And there’s nothing that, even given every second chance, I can honestly say I would remove or change. I regret the places where I hurt people, and there are too many of those. But I don’t really want to go back and change anything. I just want to do better going forward.

I’ve never been a very good fit in the American evangelical culture not just because I’m twice divorced, but because I’ve simply refused to adopt the stereotypical, expected ‘repentant‘ attitude. I may recognize that I’ve made poor choices more than once (not that I needed Christianity to reveal that fact to me), but I’m not ‘sorry‘ about my kids or life and I never will be. I know that a lot of people don’t know how to deal with me because I don’t fit any of their easy boxes. They have various categories for people and I don’t even superficially conform to those categories. Some can drop their neat little divisions and simply accept me for who I am. Others keep their distance instead because I make them uncomfortable. My wife sometimes thinks I don’t see the various reactions. And it is true that I’m less socially aware than many people are. But I’m more aware than I tend to show.

When I read the places in the gospels where Jesus most directly addresses marriage, I always want to note that he is mostly speaking against the way the various Pharisaical camps had used divorce as a weapon to punish and hurt the weak or benefit the powerful. Even so, within that context I don’t disagree that Jesus strongly implies the existence of an ideal against which he is contrasting and judging their abuse. I don’t really argue with that point on which so many seem to focus an inordinate amount of attention. (I will point out that it’s actually a multiplicity of ideals. Jesus and Paul both say, after all, that it’s a higher calling of some to remain unmarried and childless in devotion and service to God. That statement was at least as shocking in their ancient context as it would be to conservative evangelicals today.)

But Jesus embodied a God who has never shied away from the reality of human relationships in favor of some ideal. Even in the foreshadowing of the Old Testament, we see a good God who loves mankind. We see a God who again and again shows up saying, “Well, that’s not what I had in mind for you, but since that’s where you’ve gotten yourself, here’s where we’ll go from here.” The human relationships we form are an inextricable part of our reality. And I don’t think God judges them as incidental, secondary, or occupying some lower rung on a hierarchical ladder of love. I think he honors them for what they are in the midst of all their messiness.

In truth, if we believe Jesus, then love and worship of God cannot be separated from love of other human beings. That is, after all, what Jesus taught when he had the audacity to amend the Shema Yisrael. When I think of God, I always see Jesus sitting at the well with the Samaritan woman telling her, without judgment or condemnation, “You’ve told the truth. You have no husband. You’ve had five husbands and the man you are with now is not your husband.” It’s as if he’s telling her, I see where you are, I’m willing to join you where you are, and we’ll go from there.

Perhaps that story is so poignant to me because it illustrates the point at which I began to truly see the reality of Jesus instead of a caricature. That time came when my wife and I were planning our wedding. For a wide variety of reasons — none having to do with faith — we decided to see if we could get married in a beautiful, nearby Lutheran church. Honestly, I didn’t know what to expect and I’m not sure my wife did either. Neither of us had any connection to any Lutheran church nor were we practicing Christians of any sort. My wife was more or less a lapsed Roman Catholic and I was more anti-Christian than not. (There are a lot of reasons for both and neither are particularly relevant here.)

While I’m not sure what either of us expected, what we encountered was love. I don’t think for a moment that the Lutheran pastor had any illusions about our degree of Christian faith, though he never pressed us on it. And especially given that I had my older five year old son, we were in the middle of a custody case, and my son had already bonded to my then fiance as the mother he had deserved to have, I don’t believe the pastor had any illusions about the platonic nature of our relationship either.

We began to get to know him in pre-marital counseling and though I did not yet know that particular gospel story, I found myself in the place of the Samaritan woman. The pastor didn’t use those words, but it’s as if he said to me, “Yes, you’ve had two wives and the woman you’re with now is not your wife. That’s where you are. Let’s move on from there.” And he didn’t stop with proforma marriage counseling and a wedding. He remained genuinely interested in our lives and struggles. He gave my wife a part-time job at one point that was also flexible enough to meet the demands the custody case placed on us. He needed a secretary and she was available and skilled, but that practical act always meant a lot to me. There had to have been at least some people more devoted to his church to whom he could have given the job.

We were never exactly regular attendees at that church, but we did go more often than we had originally intended. (That’s not saying much since I’m not sure we really intended to attend at all once the wedding was over.) And when our son was born, we had him baptized by that pastor. That Lutheran pastor never really did anything dramatic or showy. But he did live the sort of love we see in the gospels. He chose acceptance over rejection. He chose love over any particular set of rules. And by doing that, he led me to question whether or not I might have been wrong in my judgment of Christians and Christianity. I doubt he had or has any idea of the impact his actions had on me. But the truth is that I’m not sure I see how I would have moved from where I was to anything like Christian faith without his small, but consistent acts of love.

The theological point I take from all of this is that it’s not my job to somehow ‘fix‘ the web of human relationships surrounding and supporting another person. My wife and I have and may again in the future find ourselves in a place where we need to do what we can to help someone who is being abused. So I’m not at all saying that we should stay aloof or apart from others. That’s not love. However, it’s up to God, not us, to ultimately sort things out. Our role is to acknowledge where people are and not turn away from it. Lies flow from darkness, not from the light. We should never pretend that things are other than what they are. But having done so, we are to love. It’s as simple and as difficult as that.

I’m not sure that you can err by loving too much or too freely. But if you can, I would rather err on that side than by not loving enough. I don’t think I’m very good at love, at least not the sort of love that Jesus commands. But if there’s one thing I want to do better, that’s probably it.