Tag Archives: parenting

Off and Running

As I mentioned in my last post, May is Celiac Awareness Month and to see first-hand the challenges that my son, Cam, faces every day, I decided to go gluten-free for the month. Not only am I doing this to help him feel less isolated, I wanted to see how it affected me. Our house is probably 80% gluten-free anyway so I was curious to see if a complete absence of gluten made me feel any different.

So, on May 1, I went gluten-free. I weighed in that Friday morning at 193 pounds (this morning I was 191 but I attribute that to a little dehydration and typical weight fluctuation). I have to say, the first weekend of being gluten-free went great. Now, I need to be honest and admit that I was around a group of people that entire weekend who all follow a gluten-free diet so I had an advantage. We had many arranged and catered meals so the options were bountiful and allowed me to “ease” into my transition.

So, I was off and running. And when I say that, I mean it…literally. Ok, this may be TMI, but after three or four days on the diet, I started to get stomach issues. Bloating, discomfort, worse things. The thought crossed my mind that maybe eliminating gluten from my diet had set off some kind of odd, digestive chain-reaction with me on the complete opposite end of the spectrum than my son. I was the yin to his yang. Gluten made him sick, the lack of gluten made me sick. On my 3rd day of experiencing my “issues”, I began to wonder the validity of my thought. Turns out that I probably just had a stomach bug as the symptoms subsided and the remainder of week one went smoothly without further searching of “does my body require gluten” on Google.

As I pass day 8 of my journey, I feel good. I can’t say for certain or not that I feel any different than what I usually do but I certainly don’t feel worse. What has happened is that I have developed a new found appreciation for what Cam and millions of others who have to follow a gluten-free diet need to do to stay healthy. “Grabbing a quick lunch” is difficult. Eating at restaurants bring more of challenge. Instances such as almost reaching over and grabbing the remainder of a hamburger off of my daughter’s plate, resisting the temptation of taking a bite-size donut from the container that was sitting on my softball team’s bench, and not licking the beater of a Mother’s Day cake all require a good amount of discipline and extra thinking. Knowing that these are situations that my son faces every day and realizing that he is making these disciplinary decisions on his own makes me even more proud of him than ever. I’m 41 and I find myself cringing at the thought of eating another sandwich on a gluten-free bun after choosing to do this for a week. He’s 14 (in a couple of days) and he doesn’t voice any complaints when I pack him his 187th lunch of the school year because he has no other options and his body gives him no choice.

It’s humbling watching your kid exhibit intestinal fortitude at a level greater than you. It’s also extremely motivating. When that calendar flips in three weeks and Celiac Awareness Month is gone for another year, I may go back to my regular diet but I won’t stop in my advocacy for him. For what he does, it’s the least that I can do.

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Back to the Beginning

Like many people, I love a good mystery. Whether it be an attention-grabbing yarn weaved by a talented storyteller or a well-crafted tale on the silver screen, mysteries often have many of the same, satisfying components.  You have the hero / detective who is trying to put together the pieces of a puzzle to solve the crime. There is usually one main clue that breaks the case open and ties in all of the leads and brings into focus for the hero and the audience the answer to “whodunit”. And, almost always, there is a time when the story returns to “the scene of the crime”. I wouldn’t call any part of my personal life a mystery and there have definitely been no crimes committed but this coming weekend, I do consider myself returning to the “scene” that provided us the main clue in answering the question of what was bothering my son. I briefly touched on this “discovery” in my very first blog that I posted several months ago. My children are very lucky to have three great-grandparents still alive and thriving in their 90s.  My wife’s grandparents, at 97 and 93, are still going strong and living independently in the same town that she grew up in. Not able to travel on their own, we make it a point to go and visit them every four to six months. It was during our visit last September that we had the night that I’ll always associate with turning point in our family’s and my son’s life.

Cam had been going through various bouts of stomach related problems for almost three months. We had visited his doctor several times over the summer and had a variety of tests completed with no definitive answers (no testing assigned was a blood marker test). We went to a specialist and was prescribed probiotics with a fill cost close to $500. We purchased a generic version which had limited success but we were never convinced as parents that a pill was going to be the answer to his problems (in hindsight, money well saved). We kept a limited food diary but our untrained eyes never discovered a pattern that pointed to gluten as the prime suspect. Every time that he had an episode, we were back to square one. So, with the mystery still unsolved , we ventured on our road trip.

On our journey, which I can now almost drive in my sleep, we have a designated stop at the halfway point. At this stop on this particular trip, Cam had a sausage biscuit for breakfast. Once we arrived in town, we stopped and picked up lunch before checking into our hotel. For lunch, Cam had a chicken sandwich. Dinner that evening consisted of three more types of bread. As many of you know, as a parent you have an instinct that kicks in when there is something wrong with your child. When our kids were babies, I was the one who would hear them wake up in the middle of the night. It could have been just a whimper but something in my head constantly kept me in tune with their needs. So, on that night in the hotel room when I woke up at 4:00 in the morning, I knew something was wrong. The light was on in the bathroom so I got up and lightly knocked on the door. When I saw Cam’s face, I knew he was hurting. He filled me in on how he felt and what had occurred before I woke up (I guess my instincts aren’t as sharp as they were when he was younger). I had him try to rest with my wife and I in our bed but laying down only made his pains worse. After a ten minute attempt at distraction, it was back to the bathroom. The next 30 minutes of sitting on the cold floor were not for the faint of stomach but through tears, hand-holding and support, the pain passed and he practically collapsed in his bed from exhaustion for the rest of the night.

That evening, I promised Cam that I would make his “nightmare” stop but looking back on it now, I realize that I was clueless as to how to make that happen. The next day, thinking that bread had something to do with his issues, I still allowed him to have half of a sandwich bun for lunch. I actually thought that this would help. I had never heard of cross-contamination and had no idea how many food products were causing my son’s body to attack itself. How quickly things have changed. We approach this trip to visit Cam’s great-grandparents with an entirely new perspective. Six months of immersing ourselves into the world of Celiac disease and gluten-free options, we feel we are ready as we can be. We know the extensive efforts that need to be taken with his foods and have pre-planned an entire, long weekend’s worth of menus, snacks and drinks. We return with our own silverware and plates to avoid possible residue contamination. We have looked up restaurant options and have back-up itineraries just in case his needs can’t be met. We have even been bold enough to book our room at the same hotel; the scene of the “crime” and a memory that will not go away any time soon. Admittedly, Cam is a little nervous, and rightfully so. But, if anything does happen, he knows that six months has provided us with more than enough experience to solve any mysteries that come our way.

Maintaining Balance

ScaleThe other day I was curious. I wondered how many times we brought up the word “gluten” or “celiac” in conversation during the course of a normal day. If you think about it, eating is an integral part of daily communication in everyone’s home. Over breakfast, you talk about your plans for the day. If you are a parent or work outside the house, lunch is usually the next topic and the decision is made as to what needs to be prepared or packed. Halfway through the day, the thought crosses your mind or a conversation is had with your spouse or loved one that touches on plans for dinner. “Can I have a snack?” is asked when the kids get home and finally, when the entire family is back under one roof, the daily debriefing is conducted over a warm meal at the dining room table. Talking and food go hand-in-hand. So, with the eating lifestyle changes that we have endured over the past months, I just wanted to know how much Cam’s condition had become a part of our every day vernacular. I’m embarrassed to say that I tried to find out and lost count.

On one hand, this is a great thing as it shows that my wife and I have our son’s health first and foremost in our minds. On the other hand though, are we putting too much emphasis on these changes? Has gluten not only taken over my son’s intestines but had it also taken over as our family’s primary topic of small talk? I know that things will change as we become more accustomed to this new diet in the months and years to come but I definitely do not want it dominating the conversation. A balance needs to be achieved. This will not only be good for Cam (de-emphasizing his differences) but it will also be good for his younger sister. Caroline is almost 10 and she’s a non-Celiac. She hasn’t met a food that she doesn’t like and there really isn’t anything out there that she will not try. She’s at that stage where she’s eating something such as an orange or crackers or a yogurt about once an hour. She doesn’t care that the crackers have changed from Wheat Thins to Nut Thins and we’ve heard no complaints about the new chocolate chip cookie recipe. I’ve never asked her but I’m sure she gets tired of hearing the words “gluten” and “celiac”. To her credit, she has never said anything. She watches her mother cook in the kitchen and seems genuinely interested in the changes made for the benefit of her brother. She’s insightful enough to ask questions about whether or not the rest of us should also be taking vitamins to fulfill our lost, daily intake. She’s been the perfect sister when it comes to her brother’s disease.

But should she be deprived (for lack of a better term) of an expanded palate? When we pass up the artisan bread at the grocery store, while healthy for him is it fair to her? We do take her out when Cam is at an after-school activity or a friend’s place and we “sneak” a piece of NY style pizza or chocolate lava cake. I don’t want it to feel like we’re “cheating” or doing something wrong but, honestly, sometimes it does. And we want to change that. He says that he doesn’t mind if we have certain foods that he can’t so maybe it is time to test that statement. Not for our sake, but for the sake of his sister and understanding that her tastes can be different. It’s a balance that we need to find and achieve, to match the love that we have for them equally.