Food Anxiety

Ramona and I eating out in Mexico!  Not easy to do gluten free, but doable.  We are learned to overcome our food anxeities to make room for travel.  We still have a tough time with Ramona - who has only been gluten free for a little under a year and has a hard time watching other people have cake - but we make sure to have lots of gluten free ice cream.

I was sent a New York Times article today by a friend, The Allergy Buster: Can a Radical New Treatment Save Childre With Severe Allergies. The article discuses a de-sensitization therapy study being done by Dr/PhD Kari Nadeau, an associate professor of immunology and allergies at Sanford University School of Medicine and Lucile Packard Children's Hospital, for children with multiple severe allergies. The article hits close to home for us, living with multiple children with Celiac Disease, we face the same restricted diet lifestyle and anxieties as families with severe food allergies. I could relate to the first paragraph of the article which depicts a woman's life with her daughter’s numerous dietary restrictions including egg, dairy, wheat and shellfish allergies.

"For nine years, the greatest challenge Kim Yates Grosso faced each day was keeping her daughter Tessa safe. Tessa was so severely allergic to milk, wheat, eggs, nuts, shellfish and assorted other foods that as a toddler she went into anaphylactic shock when milk fell on her skin. Kim never left her with a baby sitter. She slept with her each night. And when she needed to work, she found a job she could do primarily from home in the evenings. She successfully lobbied the Menlo Park, Calif., school district to provide Tessa with a full-time aide (in accordance with the Americans With Disabilities Act) to shadow her at all times. She made all of Tessa’s food from scratch, including safe treats to bring to birthday parties, when she could persuade her daughter to attend them at all. Tessa never spent the night at a friend’s house — she didn’t feel comfortable sleeping in an unsafe environment. "

The article goes on the state that Kim gave up these foods as well joining her daughter in the restricted diet. Our entire house is gluten free and has been since my first daughter was diagnosed in 2009 with Celiac Disease. I made this choice, because I want my daughters’ home to be a safe haven from the gluten saturated world outside our doors. A place where both my daughters’ (the second now diagnosed as gluten intolerant) can feel comfortable, not on guard and never looking for a stray crumb or cross contaminated utensil.

Of course this article is addressing a cure, which is not relevant to Celiac Disease, but it sparks a discussion on the anxieties that all families face when their children are unable to partake in regular food activities.

I can distinctly remember one of the first BBQs we went to after my first daughter was diagnosed with Celiac Disease. It was a birthday BBQ at a community park for a close family friend.  The food was cooked on community grills (buns toasted on the same grills – who knows how many times).  The entire picnic table was strewn with gluten chips, bread buns, gluten dips, gluten bakery sweets - the typical all American celebratory foods at all social get-togethers.  Plates were every where, as well as, plastic forks and knives – knowing who belonged to what plate was not easily discernible.  

I remember being immediately overwhelmed.  This was not a sterile environment, there was food danger everywhere, how the hell was I supposed to even stake out a clean place for my daughter to eat her pre-prepared food!  I did not wanting her to sit at the table, but if she did, I established wanting her to sit next to me, where I hoped to contain the possibility of crumbs, double dips or even her accidently touching the outdoor table laden with contaminates.  The table was so crowded there was plenty of reaching over plates – and my anxieties peaked when I saw crumbs fall onto neighboring plates of party goers. 
 
I was overwhelmed by my first experience of a restricted diet in the chaotic real world food environment.   I learned quickly that not only would I content with food issues, but people issues as well.  A friend of mine became enraged when she thought I was moving my daughter from sitting next to her, to sitting next to me, assuming I was spiting her. Oye!  Apparently adults free of dietary restrictions might not understand the anxieties, not to mention real danger, my daughter and I were up against.   

I lost that friend, but I learned when your child is at risk you can only keep the friends who will support you as a parent, not act like children themselves.  Since then I still have my daughters sit next to, or even between my husband and I.  The rare times I have made exceptions I have regretted it, dealing with vomiting and children with stomach aches later on.  I have witnessed people encourage my children to play hand games even across the table at restaurants totally oblivious to having eaten pizza or bread with their hands only moments before or hand my daughter food from their hands right after touching their own food.  

Many family members and friends are well meaning and offer to help, but keeping a close eye on what my children consume is what I have trained myself for, and not something that is as easy as it might appear. Living on alert and with anxiety in social settings is an inherent part of being my daughters' mother. And it can feel exhausting to not only monitor my daughters’ food, but also their interactions.

The article hit on another aspect of a family ruled by fear of food, and that is the anxiety it causes the children.

"Tessa began having panic attacks. She no longer wanted to leave the house without her mother — even to go to school or diving practice. She was afraid to eat. “Her belief was, If I don’t eat, I can’t die,” Kim recalled in one of our many conversations over the last year. When Kim went away for the weekend, she returned to discover her daughter had eaten only one bowl of plain white rice in 48 hours. At school Tessa didn’t want to touch anybody or anything. What if at recess the kickball had rolled through a splash of milk or some bread crumbs in the courtyard where kids ate their lunches? Costly sessions with a child psychiatrist were of limited value. Treatment for obsessive-compulsive disorders like germ phobia teaches the sufferer to distinguish anxiety from reality, but the reality for a severely allergic child is that invisible trace contaminants can kill."

My children do not have to worry about anaphylactic shock; therefore, our anxieties are not quite as extreme, but the anxiety is there and coping with my childrens’ anxiety has a large learning curve.

I remember when I first moved to South Dakota... the winter had finally passed, we were meeting people, and we even had dinner plans with a new family - one I needed to get to know for my own sanity - social isolation can be a real thing right after a huge move.

My friend prepared a gluten free meal. After going over the brands and the way the meal was prepared I felt confident it was, in fact, safe for us to eat. However, I made a large mistake, I alleviated my own anxieties, but I did not consider how my daughter, only one year into her diet, would feel. She freaked out!  There were tears, hives on her face, she left the house entirely and crawled into our car to hide.  The whole table got to watch as she stalked out the kitchen door and right past the dining room window, past the barking dog and into our car where she slammed the door and laid down.  I felt devastated.  Here I want to make a new friend, she went out her way to make a nice meal, we could ALL eat and my daughter refused to sit at the table (cried in the office for a while) and then stalked out of the house – balking at the food the whole time.

The experience was mortifying and confusing for me. I admit, as an adult who really wanted to make a new friend, I might have been a bit irritated too. Lucky for me this is a woman that is a good friend; she understands kids having a few of her own and could laugh off the small (well, maybe large) scene my daughter was throwing. I was less accepting at the time. It took me a few days to see the event for what it was - my daughter was not used to the brands being used, she was still angry about her new 'limited' selection in foods and she did not feel comfortable eating in a new house. We had stopped eating out, stopped eating at friends’ houses, more or less stopped playdates, all to try to get the diet under control - my daughter in that moment was feeling out of control.  My daughter had a very real understanding of her diet, of the necessity of it for her health and a very real feeling of loss of a freedom of choice in her old diet. 

Needless to say, we had a lot of learning to do together and we have embraced learning to live with anxiety, developing strategies to handle that anxiety and continuing to expand our diet to better suit our needs.

Our anxieties have become more manageable with time, both from learning the ins and outs of gluten free living and finding the enjoyments it can provide too (like making pancakes every weekend and cupcakes).

I have found teaching my daughter to read the labels, wash her hands before she eats, ask the right questions and be more carefully to slowly, slowly branch out to new eating circumstances helps her.  Having a list of regular restaurants we are comfortable with helps keep consistency and gives us a place to go out too.  Keeping our table as gluten free as possible when dining out and always having a large bag of pre-prepared snacks for social outings – not relying ever entirely on our hosts relieves my children from the “what if I don’t like it?” scenario.  I also do not force my kids to eat at other people’s homes – I acknowledge the anxiety this creates is unrealistic for them to deal with just to be polite.

I imagine that we will continue to learn how to communicate our needs to others, deal with anxiety in social situations where food is a challenge, but we keep learning and are grateful to have great family and friends that are willing to learn with us.  J