Tag Archives: Celiac

I Got “Glutened”!

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The term in the community is “getting glutened”. It’s what every Celiac or person with a gluten-sensitivity fears will happen to them. Somehow, someway, either through cross-contamination or mis-labeled packaging, their gluten-free food ends up not being gluten-free. Obviously, this leads to dire consequences on a varying scale for individuals such as Cam. As diligent as we are, both inside and outside of our home, Cam still gets “glutened”. When this happens (probably three times in the past nine months), we joke that the “running calendar” resets back down to zero. We liken it to factories and workplaces and their days without incident / accident signs. So proud when the number gets higher, not so much when it shows single digits.

Well, nine days into my going gluten-free, I got “glutened”. Yep, just nine days. I feel the shame that the factory worker feels when the sign shows “0 days” but what happened was in no way my fault. In fact, what happened is our greatest fear with Cam and we were lucky that this happened to me and not to him.

Cam wasn’t even with us. He was at an amusement park with his orchestra group from school. My wife, daughter and I were out doing some shopping and decided to have dinner at an establishment local to our area. Just nine days earlier (ironically), I had lunch at another one of this restaurant’s locations with some prominent members of the gluten-free community. That location passed with flying colors so I was confident that I would be able to eat safely this evening and continue with my 31 day quest for Celiac Awareness. After we were seated, I asked our server for a gluten-free menu. This was the same server who helped us the entire evening (taking our order, bringing our food) so there was no confusion as to what menu I had in front of me. I do not tell these locations what my goal is or what I’m raising awareness for. My role is that of an every day, gluten-free consumer.

You often find the same menu items on a gluten-free menu as you would the standard menu that the restaurant provides to you. These items are listed with modifications or are naturally gluten-free to begin with. The item listed on the gluten-free menu that caught my eye was the double stacked quesadillas. The double stacked quesadillas were also listed on the regular menu so I made sure to hand the server the gluten-free menu and provide her my order at the same time. Maybe this was my fault in thinking that this server would make the correlation of me asking for a gluten-free menu and me handing her the gluten-free menu while ordering with me wanting my order to be gluten-free. Chalk another one up for that saying about “assuming”.

I don’t know about you but one of the items that we have found hard to find as a gluten-free family is a good tortilla. We’ve tried several brands and while some are ok, none have the same taste/texture as the flour-based tortillas. This is what tipped me off. My quesadillas came cut into thirds and looked really good. Not only did they look good, they tasted good. I gave a bite to my wife and to my daughter and we all agreed that these were the best gluten-free tortillas that we have yet to experience. Curiosity got the best of us as we needed to know the type of tortillas that the kitchen worked with so we could buy them ourselves. I called our server over and let her know that it wasn’t a rush but when she had time, we just had to know the type of gluten-free tortillas that they used.

You know that time when something goes terribly wrong and your insides turn to liquid, you break out into a cold sweat, and all the blood rushes away from your head? I physically witnessed this happen with our server. The look on her face was one of fear, panic, and desperation rolled into one. “Did you say gluten-free?” she asked. I responded “yes” and she turned another shade of pale gray. “Ummm, those are our regular quesadillas. Did you need gluten-free?” Two things went through my mind. First, so much for finding the answer to our gluten-free tortilla dilemma. Second, was it not enough that I asked for a gluten-free menu? I placed the dots out there; did I really have to connect them too? I explained to the server that the reason that I asked for the special menu up front was because I was ordering gluten-free. I did let her off the hook a bit saying that, for me, it was a lifestyle  choice but if my son had gone through the same experience, it would have been drastic. A few minutes later the kitchen manager came out and asked if I was going to be ok. I appreciated her asking me this and also her efforts to explain how they have special treatment for every gluten-free order in their kitchen. But, what happens in the kitchen doesn’t matter if the training isn’t up front as well. She did offer to bring me some gluten-free quesadillas (as she noticed I stopped eating) but I politely told her “no”. A replacement order wouldn’t have been good enough for Cam, it wasn’t going to be good enough for me. Obviously, they thought that I had eaten enough as they charged me full price for my incorrect order. Icing on the non gluten-free cake.

I’m not here to bash a restaurant, a server, or a kitchen manager. I did my best to not mention the name of the facility in this post (but if you were on my Twitter site yesterday around 7:00 eastern time, the cat’s out of the bag). This is just another perfect example of why it is so important that Cam and others in the GF community be their own advocates. Leaving it to another person, especially one responsible for the very thing that can be harmful to you (in this case, food), takes trust. When situations like this happen, that trust level is diminished and the rebuilding starts again. We dodged a bullet. The “days without incident” counter is back to Day 1. I’m just happy that it’s my personal counter and not Cam’s.

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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.

Encouraging Signs

With the changing of the seasons and the long-awaited warmer weather, our family’s daily activities have shifted and we are back into a fun and familiar Spring pattern. On the weekends, we work in the yard, enjoying the fresh air and striving to recreate the landscape enjoyed by the bare feet seen on many lawn care commercials. The kids are doing their best to stay focused in school, knowing that there is a mere seven weeks left before three months of swimming, ice cream and no homework. In the evenings, softball and baseball practices consume a good portion of the week, giving us a chance to meet new teammates and to reconnect with families who we have grown to become friends with over the course of past seasons. After a practice this past week, we had the opportunity to rekindle another activity experienced every baseball season; meeting up at the post-game hangout. You can tell that this is a beloved activity since we didn’t even wait until the season started to meet for the first time this year. Call it a post-practice get together. It’s a chance to sit down and speak with people who we like but haven’t seen for a few months (outside of mandatory school activities that forced us to venture out into the snow and cold). All of the kids, team players and younger siblings, get to hang out in a non-classroom setting and build a camaraderie that will carry through the next four months. The parents get to sit back, enjoy a beverage of their choice and partake in adult conversation that was limited during the winter. It is a time that is missed during the off-season.

Our team’s hangout of choice is the local Buffalo Wild Wings, affectionately called BWs (B-Dubs). We have had success, as a family, eating at BWs since Cam was diagnosed with Celiac. Our branch has a gluten free menu and they have a dedicated fryer for the traditional, non-breaded wings so we don’t have to worry about cross-contamination. It was one of Cam’s favorite restaurants before he was diagnosed so I think that he likes the fact that he can still go there and eat the same thing that he did when he was on a “normal” diet. More importantly, it is a place outside of our home where he feels “comfortable” eating. Unfortunately, these places are few and far between. On this particular night, our practice ended at 8:00. It was a limited team practice so there was only four or five adults and six players in our party. We figured that given the later time and the small number in our group (usually we have more than double this amount), getting a table wasn’t going to be too difficult. Our assumption did not take into account that the local hockey team’s first playoff game was on and the middle school baseball and softball games ended about the same time as our practice. Our wait was 40 minutes. During this time, Cam hung out with his teammates and our party grew in number thanks to chance meetings with other families and friends who were also there. It seemed as if everyone had the same idea.

Once we were seated (parents at one table, kids at another), the waitress came around and matched up which parent was with which teenager and responsible for the large amounts of food that they would be ordering. I took this time to speak with our server about Cam’s limitations and the need for his wing order to be prepared using the dedicated fryer. From our past visits, we have grown to know several of the staff at this BWs location and most are familiar with his dietary challenges. I had not seen this particular waitress before but she was very understanding of Cam’s needs and said that she would speak with her manager to confirm that they were able to abide by our request. Given our track record of gluten free success with this BWs, I was surprised when the manager came out to my table. She wanted to let me know that due to the demands of the evening crowd, they could not keep a dedicated fryer open and there was a risk of cross-contamination with our order. I called Cam over to the table where he spoke with the manager face to face. From her mannerisms, I could tell that the manager was very apologetic with Cam and understanding of his situation. I did not not hear any more of the conversation but Cam gave me the nod, letting me know that he was fine with whatever was said.

Even though our order could not be fulfilled, I viewed the evening as a success, filled with encouraging signs of change.  My confidence and respect for our local hangout grew immensely that night. Our server listened to my request, was able to process the importance of it and took the actions that she needed to when not understanding if they would be able to fill our order. On a night where her restaurant was packed with consumers, the manager took the time to come to our table and explain the situation. She was open with both myself and, more importantly, with Cam. She didn’t have to tell us that the fryer was cross-contaminated. She could have just viewed me as another customer and ignored my request for the sake of gaining my dollar. By compassionately doing the right thing, she saved Cam a night of pain and discomfort. By acting as she did, she earned my return business and hopefully the business of others in a community seeking gluten free answers.

BWs, though, was not the only source of encouragement for me that evening. I’d be remiss if I didn’t mention how proud I was of my son. When I started this blog and my involvement in the gluten free community, I told Cam that I would stop doing what I do at any time if it made him uncomfortable. Here I am, speaking in an open forum about his health issues and symptoms that many may consider embarrassing. I remind him on a weekly basis that this offer to discontinue my advocacy is always on the table. But on that night, at a loud and overcrowded sports bar no less, I witnessed what I deem to be the next step in this process. Cam has accepted his condition and is starting to become his own advocate. He’ll officially be a teenager in three weeks but his understanding and grasp of his situation shows maturity beyond his years. Here he was, standing and speaking with the manager (a complete stranger to him) and talking about how their food preparation affects his health. If I would have needed to speak with a stranger at the age of 12 about my health and the possible “fall-out” from a poor choice, I would have been mortified. But there he was, keeping eye contact during the entire conversation and advocating his lifestyle. And the surprises for me didn’t stop there. After giving me the aforementioned nod, he went back to sit with his friends. I watched as they fulfilled their curiosity and asked him about his conversation with the manager. As if he was talking about the latest video game or an awesome play on SportsCenter, he told them about it. His mannerisms switched from having a very “adult” conversation to talking nonchalantly about his Celiac with his buddies in the blink of an eye.

As I’m sure all parents do, I still view Cam as the small bundle of joy that we brought home on Mother’s Day thirteen years ago. We bend over backwards to protect our children for we still see them as our babies, helpless and needing our encouragement to learn and strive. When these roles change, and your child becomes a teacher, you can’t help but to feel a strong sense of pride tinged with a touch of melancholy. Gaining his partnership in advocating his cause is paired with losing the feeling that my son is still a helpless baby boy. With this loss, though, comes a feeling of accomplishment and confidence. I know that his condition is not a source of embarrassment or cause of alienation among his peer groups. I have seen that he can responsibly handle a challenging situation and understand the ramifications of his choices. He would tell you that he’s just happy that he can still go to BWs with his buddies but I’m encouraged by his openness and similar desire to make his lifestyle easier in the years to come. It is for his own good and I know now that he realizes that.