Tag Archives: Gluten Free

Frustration

QsThe other night, we were reminded of how little it takes for Celiac to rear its ugly head and how quickly it can make Cam’s life miserable.

Cam had not experienced “being glutened” for almost two months. He had gone about 60 days without an incident and the times when he experienced symptoms on a daily basis seemed to be a distant memory. Spring activities and plans for the summer had taken over our primary thoughts and while we always keep his condition in mind, we felt comfortable in our day to day efforts to keep him safe. As if it had taken offense to our false sense of security, Celiac reminded us that we were in this for the long haul. And it reminded us quickly and harshly.

Cam went the whole day without having any issues. He had his usual breakfast, packed his lunch for school and we made dinner here at home. We had family over to celebrate my daughter’s birthday and throughout the duration of the visit, Cam had no problems. After our company had left, he went up to get his shower and I started to help his sister get ready for bed. I remember walking into our bathroom where he was standing there; looking at his reflection and brushing his hair. Typical evening ritual. It wasn’t two minutes from when I left him that I heard a cry. It was a sound that dropped my stomach for I knew exactly what it meant. I had not heard it in two months but it is indistinguishable. I went back to the bathroom and he was doubled over with stomach cramps. Just like that. Quick and relentless. The next 90 minutes was all too familiar. Pain, tears, stomach trauma, hand-holding and frustration.

Cam, unfortunately, has to go through the worst of these symptoms on this own, but frustration is something that we all experience during these episodes. The internal questions, for us as parents, start the minute that you see his discomfort. What caused this? What did he eat to set this off? What could I have done differently to stop it? As he lay in my bed with a sore stomach and his body shaking while recovering, we all discuss our theories as to why this happened. Cam feels that he had too much dairy (Celiacs often have varying levels of lactose intolerance since the lactase enzyme is depleted when gluten blunts the intestinal villi).  My wife takes it personally whenever an episode happens to Cam. She is blinded by his pain and can’t see that she is doing everything and more to protect him. Since all of his meals this day were prepared at home, she’s taking it a little harder than normal. She questions if she cross-contaminated a utensil that she used when preparing his food. I ask myself about a different type of meat that I bought and grilled for dinner. Was the beef modified? Was the grill clean? I rack my brain thinking of items that I grilled prior evenings to see if I can find a solution. But no answers come. We are left with our questions and the frustrations of not knowing what could have been done differently to assure that Cam doesn’t have to go through this again.

We’re not naive. We know that there will be future episodes. We don’t know how severe they will be or how quickly they will come but we know that they will likely be accompanied by more frustration. So, as parents, we need to keep our heads and not let that frustration get the best of us. We need to ask the questions that we do. We need to keep advocating to assure that what he goes through is understood and give Cam a chance at an easier life as he gets older.  But for right now, we just need to be there for him, holding his hand as long as he needs us to.

 

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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.

Green with Envy

ImageIn my house, St. Patrick’s Day is a pretty big deal. I would probably rate it as the 4th most important holiday that we celebrate behind Christmas, Thanksgiving and Easter. July 4th is almost up there but despite the fireworks and warm weather, the Irish holiday wins out in our house for one reason…we live in Dublin. No not that one, the other one. The land that our little burg is located on was first surveyed in 1810 and named Dublin since it reminded the surveyor of his beautiful homeland in Ireland. It was incorporated as a village in 1881 but didn’t officially become a city until 1987. Since that time in 1987, the city has fully embraced it’s “Irish” heritage. There are limestone fences, brick sidewalks and 19th century architecture throughout but these are just the obvious nods to the Emerald Isle. We host one of the nation’s largest Irish Festivals and have multiple town pubs that pay homage to one of Ireland’s favorite pastimes; throwing back a pint or two. Even the day that St. Patrick’s Day lands on (March 17th or 3/17) is found hidden in every day life that many Dublin residents probably aren’t aware of. The freeway exit to Dublin off of our city’s outerbelt: Exit 17. My zip code ends in 3017. Coincidences…no. This town takes it’s Irish seriously.

(Side note: My wife is associated with the visitor center here so if any of the facts above are wrong, I’m going to hear about it.)

So this past Saturday, under chilly but bright blue skies, Dublin had it’s annual St. Patrick’s Day parade. It’s the only suburb in our area that holds a parade and the size of the event rivals (or maybe even surpasses) that of our main city. And why not, it’s Dublin! People decked out in green put out their folding chairs two hours before the parade starts. Irish Wolfhounds and Setters are the dogs of choice for the day. Kilts are worn whether they should or shouldn’t be. It really is an event embraced by the community. And since it is a community event where my wife is very well recognized, our family is busy the entire day. From office visitors to prepared lunch functions, the actual parade is our “down” time during an extremely busy morning and early afternoon.

When watching from my fourth row spot this year, my feelings were confirmed that one of the best parts of the parade for me is seeing all of the kids up against the barriers with open hands and bags, waiting for candy. By this time of year, their Halloween stash is long gone (hopefully) and they are all anxious to replenish their sugar supply. During the parade, the kids will cheer for the bands and flinch away from the clowns but they’re most excited to see the politicians, church groups and local organizations that are walking along the route and passing out the sweets. They run the gamut of emotions over what amounts to a two cent Tootsie Roll. This year, there were numerous children in our area; including my daughter and her friends, my nephew (his sister was in the parade), various work associates’ kids and Cam. Cam’s at that odd age that we all go through where he’s too “cool” or “grown-up” to publicly do some things but privately will still participate in them. Given the amount of people at the parade, I was surprised to see him with a candy bag in the front row. Not only was I surprised that he would risk being seen by friends but I was surprised that he would want any candy at all given his Celiac condition. Knowing that he has a good grasp of what he can and can not eat, I still asked him if he understood that he couldn’t have anything he collected (I’m a parent and it’s my job to ask the obvious questions). He acknowledged that he did and we made an agreement that the candy he received, he would give to his cousin when she was done riding in the parade. He was o.k. with this idea…or so he said. My niece was towards the front of the parade so when she finished and arrived in the seating area, the parade was only about halfway done. Once she was settled, I had Cam hand her the bag that he had been adding candy to for the past 30 minutes (he was doing quite a good job due to his long arms). When he handed the bag over, I witnessed a familiar look flash across his face. It was brief but it was there. The joy of the parade slightly went away for what could have been perceived as envy. He may have been jealous that what he collected was no longer his. But I’ve seen the look before and I knew that it was neither envy nor jealousy. The look was resignation. Resignation that, once again, his condition has changed something that he has enjoyed doing his entire life.

This past six months I have developed sympathy and gained the utmost respect for those in our communities that suffer from any type of food allergy or food-related condition. Something that many people take for granted is a thought process that never stops for those affected. Cam’s disease has opened my eyes to these situations but I often ask myself if I am seeing everything. Would I have just assumed him o.k. if I didn’t see the envy/jealously/resignation on his face for those brief few seconds? Did he feel isolated having to pack his own sandwich and not getting to grab a Corned Beef and Swiss on Rye at the lunch we went to after the parade? Was the reason he didn’t stop and speak with his friends earlier in the day due to the fact that they were in line at a coffee shop where he doesn’t feel safe? I may never know the answers to these questions. Since we are still in the first year of his diagnosis, it’s possible that I may be jumping to conclusions and creating situations and feelings in my head that don’t exist. But until we are more comfortable with his condition (if we ever are), my wife and I will continue to look for these signs and find ways to make things better if we can. Currently, the communication between us and Cam is great but I realize that he is two months away from being an “official” teenager and chances of our communication levels being what they are today will take a drastic hit with the introduction to hormones and the pressures of high school. So with the worst in mind, I will keep my eyes open. Open to the changes happening in the food industry. Open to the development of medications to assist with the auto-immune response to gluten. Open to all of Cam’s feelings. And in the end, if we can see these things and maintain the level of communication with Cam that we currently have, Irish eyes will be smiling over this Dublin home for a long time.