A Message from Cam (with an assist from Dad)

Living gluten-free is not a choice for me. It is something that I have to do every second of every hour. Every hour of every day. Every day of every month. May is no different than any of the other eleven months when it comes to what I eat but it is different in that May is my month. It is Celiac Awareness Month, a time to recognize those programs that support me and everyone else who is gluten-free. The Gluten Intolerance Group (GIG) is a leading organization in empowering my gluten-free community through consumer support, advocacy and education. Their outreach includes local support groups, educational resources for my benefit and a kids’ group (for teens like me) to assist gluten-free families. They are a non-profit organization with all donations going towards these outreach programs that make living gluten-free for me that much easier. To celebrate me during my month of May, please provide a gift on my behalf to GIG and allow these great programs to continue with their efforts for my cause. 

Click here to contribute to my personal fundraiser page and thank you in advance for supporting me.

P.S. -I’ll make Dad write more on this blog. I promise.

 

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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.

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.