Tag Archives: Celiac Awareness

I Got “Glutened”!


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.

Yes, There’s a Month For That

ImageEvery morning, as I’m sure many of us do, I ritualistically check my social media pages for updates of things that may have happened during my seven hours of slumber. During this routine, I have come to look forward to a particular tweet that is posted on a daily basis by a person that I follow. It is a simple tweet but I find it highly entertaining. Her tweets list all of the celebrations taking place on that day. For example, today (May 1st) in National New Homeowners Day, Mother Goose Day, Lei Day, May Day and School Principals’ Day. There are always at least five reasons to celebrate and it doesn’t stop with just the 24 hour recognitions. It seems that if it is important to our society, we dedicate an entire month to it rather than squeezing all of our celebrations into a single day. Did you know that May is National Barbecue Month, National Bike Month, National Photograph Month and Older Americans Month? How does anyone find the time to celebrate all of this?

For me, May has always been a busy month. I think that every family has that one month where it seems as if it is someone’s birthday almost every other day. For my family, that month is May. My Dad, Grandma, Grandpa, Uncle and cousin all have a May birthday (I apologize for forgetting anyone). The month became even more special when thirteen years ago, my wife and I were blessed with our first born, Cam, on May 11th. Throw in Derby Day, Cinco de Mayo, Mother’s Day and Memorial Day and the month is here and gone before you know it. Despite this full agenda though, this year we are adding another thing to celebrate in May. For the first time, we welcome Celiac Awareness Month. Last year at this time, I would have probably read the list of things that are celebrated during the month of May and just glanced over National Celiac Awareness Month without a second thought. That’s what make this first one for us a little more special. It is an indicator of how far we have come and how much our lives have been changed in just eight and a half months. Think about that. In an amount of time less than a full term pregnancy, we have gone from having a full ingredient, flour-flying, labels-schmabels household to knowing where to buy inexpensive xanthan gum (all Celiacs just laughed at that joke). The joy of going out to eat once or twice a week has become a joy with a little more due diligence needed for success. We have had to reteach ourselves how to cook and how to eat. For all of this, we have Cam to thank.

Some of you may read that and feel that I am saying this sarcastically but I sincerely do thank him for doing what he does in the face of this disease. He didn’t choose to have this happen to him (who would) but he has accepted it and meets his daily challenges head-on with a maturity level that many adults would envy. He has become his own advocate, teaching his friends and not shying away from also teaching their parents. He could have given in to the pressures that being a Celiac brings and not been happy with what life has dealt him. But facing that adversity, he hasn’t folded, he has thrived. His condition has opened my eyes and made me want to become a more knowledgeable person when it comes to gluten free living and the Celiac lifestyle. Because of Cam, I now know that Celiac Disease is officially diagnosed in one out of every 133 people. Because of Cam, I have met so many wonderful people in the gluten free community and have been provided with some amazing opportunities these past few months. Because of Cam, I am now aware. 

So, during this National Celiac Awareness Month, we ask you to learn something that you didn’t already know about a Celiac (I already gave you Cam’s birthday so that doesn’t count). Find out more about the diagnosis of this disease and how its prevalence has more than quadrupled during the past 60 years. Take the time to discover what is being done in the food industry to make foods safer for strict gluten free diets. We’ll continue to provide our stories, new recipes and possibly some insight from guest voices other than myself to help spread the word. There’s a lot for everyone to learn and we better hurry since June and National Accordion Awareness Month is right around the corner.