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.


Celiac Family

Posted: July 12th, 2010 | Author: | Filed under: Celiac | Tags: , , , , | 1 Comment »

It’s been a rough couple of months. Since celiac has a strong genetic component, we decided it would be wise to have our two younger children screened for celiac disease as part of their annual physicals. My wife and I were shocked when both of their blood panels came back not just positive, but strongly positive for celiac. (The most specific celiac test was literally “off the chart” for both of them. It exceeded the maximum measurement used by the test.) It’s been an emotional roller coaster. The odds that any first degree relative (parent, sibling, or child) of someone with celiac disease will also have active celiac are roughly 1 in 22, so we didn’t really expect either test to be positive, much less both. It was enough of a statistical oddity that my wife decided to get screened as well, just to make sure they weren’t getting a genetic double-whammy. But her celiac panel was normal, which means they both got it from me.

Of course, there isn’t anything I could have done about it. I didn’t control my own genetic makeup, much less the genes I passed on to my children. Rationally, I know that. But it still feels awful to know that you passed an incurable (though manageable) disease on to your children.

We’ve now gone through the cycle of gastroenterologist appointments and small intestine biopsies. The biopsies confirmed the celiac blood panel for both of them, so there’s really no room left for doubt. I’m proud of my kids. They’ve both handled the diagnosis surprisingly well. Obviously, they aren’t happy about it, but they are putting as positive a spin on it as possible. My son, who is headed off to college, commented that it would force him to avoid most fast food, which he called one 0f his “weaknesses”. He’s something of a fitness nut and was happy to confirm that his preferred protein shake powder was gluten free. College will be a challenge for him, but he’s going to a university that seems to have a pretty high degree of awareness about celiac and other special dietary needs, so that’s a plus.

Our youngest is just entering her teen years. I imagine the next few years will be particularly challenging for her. And she’s more visibly upset about the diagnosis than our son. Still, she tries to be more positive than not.

This does demonstrate the importance of screening, especially if someone in your family is diagnosed with celiac disease. The one positive from this is that neither of my children yet have any celiac-related health problems and if they maintain a gluten free diet, they will never develop any of them. The immediate effect of celiac disease — damage to the villi of the small intestine — rarely produces visible symptoms until significant damage has been done. So if you wait until visible symptoms appear to test for celiac, then you’re waiting for the person to be hurt enough by the disease that it will take a lengthy period of time to recover from both the primary and the secondary effects of the disease. My kids have had relatively little damage done to their bodies at this point and do not yet have any of the secondary symptoms. With a moderate amount of self-discipline, they’ll never develop the myriad problems I developed. That, at least, is something positive.¬† I try to reinforce that with both of them.

A negative celiac blood panel does not rule out the possibility that you will develop the disease. Only a genetic test can do that. So if you have an immediate family member with celiac, it’s probably a good idea to still be screened every 3-5 years after a negative blood panel. It’s a simple blood test and trust me, it’s much better than having the disease ravage your body undetected for years.

I guess I would say that I’m crushed both kids inherited this from me, but glad that we caught it before it really hurt them. I’m also really glad the new health insurance law allows both kids to stay on my insurance until they are 26 and prohibits coverage denial for pre-existing conditions.

On a personal note, I had my first annual follow-up appointment today for the celiac-related osteoporosis in my spine. After a bit more than a year gluten free and taking 1800mg of calcium spaced out three times each day in 600mg doses, my osteoporosis has improved to the less serious osteopenia. Basically, I’m gaining bone density without medication, which is a really good thing. (Nobody tests osteoporosis medication on middle-aged men.) Hopefully next year I’ll be at or near the normal bone density range. That was really good news to hear. I’ve been as careful as I know how to be and it’s good to have my effort validated. I’m also feeling better than I’ve felt in years. Now I need to get back on a more disciplined diet and exercise regime. I used to be really good at both, but that’s one of the things that fell by the wayside as I felt worse and worse before my diagnosis.


Celiac Runs in the Family

Posted: May 24th, 2010 | Author: | Filed under: Celiac | Tags: , , , , | 1 Comment »

I was shaken when I got the call from my youngest daughter’s pediatrician informing me that her celiac panel had come back highly unusual. My wife and I wanted to have our daughter screened at her annual physical because celiac disease has a strong genetic component. Even so, our daughter had never had any obvious symptoms, so we didn’t really expect the tests to be positive. But her counts were worse than mine were when I was diagnosed.

While it hasn’t exactly been easy or always pleasant for me as I’ve adapted to a gluten free lifestyle, the disease has never felt overwhelming or unmanageable to me. I’m a tad ‘strong-willed’ and that trait has stood me in good stead this past year. Discovering that my little girl (even if she’s not actually so little anymore) inherited a genetic disease from me has been worse than anything in my personal experience over the past year. I feel worse for her than I’ve ever felt for myself.

I am glad that I’ve maintained a positive and mostly upbeat attitude over the past year about having celiac disease. That tends to be my approach toward things I can’t change anyway, but I feel that my example may have helped steady my daughter when she got the news about her test results. And she seems to be trying to approach it in the same positive way that I did.

I was immediately more concerned about the changes and adaptations she would have to make than I ever was on my own behalf. Most of our dinners are already gluten free because of me, so we didn’t need to make that transition. She has never cared for school lunches and has always taken her lunch to school, so that made it easier to manage as well. Moreover, with just a few exceptions, most of her lunch fare was already naturally gluten free. So we really only had to worry about those few lunch items, snacks, and breakfast food. I’ll have several food reviews in the future about products I found specifically to fill those gaps for her.

She’s been to a school dance and a birthday party already since her diagnosis and managed both fine. At the dance, she won a cake on the cake walk, and gave it to a friend while at the party, she just skipped the cake. Her friends know about her newly diagnosed celiac disease and have started trying to help look out for her. Socially she’s doing pretty well. Food does tend to crop up all the time in social situations, as I’ve become much more aware over the past year. But that hasn’t been an obstacle for her.

She’s inherited a lot of things from me, but this is one thing I really wish she hadn’t.

I am very proud of her and the way she’s handled this hurdle, though.