I wrote a short film about two people talking about celiac disease and eating gluten when one of them really should be eating gluten-free but are choosing NOT TOO.
Download the PDF version of this live action short with THIS LINK —> iwantGluten
I wrote a short film about two people talking about celiac disease and eating gluten when one of them really should be eating gluten-free but are choosing NOT TOO.
Download the PDF version of this live action short with THIS LINK —> iwantGluten
Everywhere you look there are companies, not just food companies, out there trying to create the idea they operate as a industrious family. And, unless you get a chance to visit the factory of business and it’s buildings, no one ever has the opportunity to know this first hand. I had a chance to see this family atmosphere first hand when I visited the Glutenberg Craft Brewery in December of 2016.
Glutenberg and their story isn’t new to how amazing foodstuffs are created; friends wanted to create a new and great tasting gluten-free beer and through dozens of tests and over a year of trial and error they created an award winning gluten-free beer. It’s what has happened in all those years since the creation of ‘the Gutenberg Blonde’ that sets them apart from all the other beer companies: they care.
They care, not just about making a traditional beer taste with all gluten-free ingredients, but making sure that their brand treats its fans, drinkers and supporters like family.
Read the Glutenberg story directly from their site by clicking HERE.
I was able to visit the Glutenberg Craft Brewery in Montreal, Quebec to tour the facility, see the process in which the gluten-free beer was made and sample some of their amazing beer flavours (most of which aren’t available in my home province of Ontario). I didn’t just get to visit Montreal (which I have never done before), I also got to take a train from Toronto to Montreal (something I also haven’t done). The whole day was filled with amazing firsts. And the tip on that iceberg was visiting the Glutenberg Craft Brewery.
While some flavours of beer I sampled didn’t come out as my favourite in the line, there was still a remarkable taste to every one of them, and every one of the gluten-free beers that Glutenberg makes deserves to be tasted and enjoyed. Glutenberg has attempted AND succeeded in doing what they originally set out to do: make a good gluten-free beer. I have had my share of gluten-free beer because I am a diagnosed celiac, some good some bad some terrible, and I can safely say that Glutenberg has their stuff together. All of their hard work has paid off and it reflects in the end product of the gluten-free beer.
What started out as a small company, Glutenberg still maintains that sense of a small company, even as it expands itself past international borders and still considering themselves a craft brewery. When looking at how in the past, traditional craft breweries where the tastes accommodating and manufactured for the area or local towns, Glutenberg is still a craft brewery, manufacturing small batches in MANY different flavours, and while doesn’t just stick to its own area, it is the craft brewery to the world. Their awards prove that.
In January 2016, Glutenberg was just available in Ontario after being available in other provinces and territories in Canada for a number of years. Even being available in almost two dozen states in the United Sates of America. I had e-mailed the company to keep me in the loop as to when I could get some of their beer from my local liquor store. As fate would have it, as a blogger, as King Gluten Free, the Glutenberg Craft Brewery was awesome enough to send me four beers to be sampled. I. Fell. In. Love.
I wasn’t able to spend to much time in Montreal when I went to visit the Glutenberg Craft Brewery. I caught the train early in the morning on a Friday and spent five and a half hours on the train listening to music on my phone, writing Christmas cards and texting my wife. All the while anticipating my first trip to Montreal. After the afternoon spent at the brewery I was back at the train station and on my way home to Toronto via the train. It was a long day, a fruitful day and an exciting day.
I have never hidden the fact about how I feel about food and the connection I have to it as a child and even an adult. Finding a gluten-free alternative to something I had as a child now as an adult diagnosed with celiac, really does take an emotional toll on me. I remember the first time as an adult I found out that Post ‘Fruity Pebbles’ were gluten-free and proceeded to eat them as a diagnosed celiac, and all the memories of Saturday morning cartoons came flooding back to me and I wept as I ate. My spirit was filled with love and joy as I could again eat something that connected me to the past. It’s kind of like smelling something that reminded you of your passed on Grandfather…only this time, it was food.
From it’s inception, Glutenberg has been creating great gluten-free beer…
In January 2016 when the Glutenberg Craft Brewery happily supplied me with a few gluten-free ‘Glutenberg Blondes’ I was once again filled with love and the memories that took place when I was a young man who had no clue what celiac disease was and was still years away from being diagnosed with it (I was diagnosed in 2008), Glutenberg tasted like high school. While some people would say it was either the best or worst time of your life, I was taken back to the times me and my buddies would go to the cottage and drinking barley based beers or the time my little sister and I would sit in the back yard (funny enough at my Grandparent’s) and drink those same barely based beers on what we eventually referred to as ‘Fun Friday’. The Glutenberg Blonde reminded me of a beer I once loved (and could not have because of my diagnosed celiac disease) and triggered something in me that has been undying since that very first sip; my love of the Glutenberg brand.
From it’s inception, Glutenberg has been creating great gluten-free beer and expanding to create new and promising ways to help out the other craft breweries around them that need just that little bit of help. A program where the vats at Oshlag (their own non-gluten-free distillery) can be rented out to other craft breweries and make much bigger batches and maximize Glutenberg’s own competition’s profit margin and creating bigger batches of a different craft beer. Or a program that helps to distribute smaller breweries brands and help get those unknown and unnamed craft brews to those who might never get it, and help out the small guy.
Glutenberg has become the big brother to all the craft breweries it works with. I stood in a room filled with all kinds of other cans and bottles of beer and was taken aback at how Glutenberg is always helping out those who need it. Companies that are looking for that outreached hand to get their name out there. Glutenberg not only treats everyone in their brewery like family, but even their competition gets treated as such; FAMILY.
It’s not everyday you get to sample award winning gluten-free beer with the Chief Operating Officer of a brewery, and aside for great tasting drinks, I was treated to amazing conversation in an environment that made me feel at ease. Glutenberg not only supplies gluten-free beer to celiacs all over it does amazing things locally to recycle beer cans, and consistently sending back the spent grain to the providing farmer once Glutenberg has finished extracting the sugar from it. The farmer can then feed his soils with the spent grain. Glutenberg has different technologies to create gluten-free beer with presses and countless ways to create new and innovate products that are all gluten-free and safe for me… a diagnosed celiac.
As for how ALL the beer I tasted: (click HERE to see what they offer) I loved them all. From the Blonde to the IPA (which is one of the best beers I have ever tasted) to the White and I even got to take a stab at tasting the ASAP gluten-free beer which is only avail be in Quebec at the time of my visit. A gluten-free IPA infused with flavours of Pineapple, Simcoe Hops and Peach. All great all unique. Even tasting a gluten-free beer made with olives and another made WITHOUT maple syrup that tasted like maple syrup. All of the beers that Glutenberg allowed me to taste were just great.
While some flavours of beer I sampled didn’t come out as my favourite in the line, there was still a remarkable taste to every one of them…
It’s not everyday you get to sample award winning gluten-free beer with the Chief Operating Officer of a brewery…
I spent the day travelling to Montreal, Quebec, toured a brewery, sampled gluten-free beer and had great conversations with some amazing people. Glutenberg welcomed me with open arms and if you’re not a fan of gluten-free beer, give Glutenberg a try. And if you’re a fan of drinking beer, give Glutenberg a try.
I thank everyone at the Glutenberg Craft Brewery for taking time out of their day to show me around.
My train ride to and from Toronto, Ontario to Montreal, Quebec was paid for by the friendly people at Glutenberg.
There was a time I was in college.
There shouldn’t be any surprises when it comes to my post-secondary education. I also never finished college. I have no problem in admitting that I never made it through one year, or one semester. At the time I never considered that I was a ‘school person’. Sometimes I still think that I’m not one to take instruction from anybody (I can be stubborn that way). Then I look back on my time in the late nineties when I attended college for Art Fundamentals and see that I was partial right, and way way wrong.
FAST FORWARD TO 2017
One day while on set at Georgina Life (the television show I host on Rogers TV) I met with some of the amazing people at the South Shore Toastmasters club and they were riveting me to my seat as they spoke about finding confidence in yourself by finding your voice. A public speaking club which helps you develop better social and public skills and aides in your ability to be present in public speaking.
I recalled my memories of how in college; there was a seminar class, where I would have to spend the entire semester creating and building a subject and then presenting and hour long seminar about my topic.
I went to the first class, and no class past that. I dropped out of college.
Public speaking was frightening.
Even high school presentations I had my issues. Even to this day I still get extremely nervous at the idea of doing it. It’s all something that followed me from those days as a teenager and those days as an undiagnosed celiac.
I was diagnosed with celiac disease in 2008 and I was well into being the person I was meant to be and It was hard to change a lot of who I was. The diet was fairly easy. Switching from gluten rich foods to an all, 100% gluten-free diet was easier than I though, and now in 2017 it’s second nature.
NOW, I see that my fear of public speaking was partially because of my undiagnosed celiac and wasn’t always a figment of my imagination. I see that those times I buckled under the pressure of someone watching me talk was because the toll gluten was doing to my insides and ultimately affecting my mental state. Of course this revelation took almost two decades to figure out, but if I was diagnosed with celiac disease at an earlier age, I could have finished college and become the visual artist I intended to be or finished college and became a world renowned motivational speaker.
But I didn’t.
Here’s what happened.
I was diagnosed with celiac disease when I was 27 and then almost nine years later I became the host of a television show (speaking to the possibility of more that 10,000 people live) and a lot of my fear disappeared. Not before I was diagnosed with celiac and straighten out my shit. But, because I am now eating gluten-free I can maybe function the way I was meant too and not someone in constant pain due to the improper foods. Now, because I was diagnosed with a disease that is so invisible, I wasn’t diagnosed until I reached the pinnacle of my sickness.
My story isn’t new. But it can help someone to see what the potential of celiac can do.
Not only have I gone on to speak LIVE on a television show. I’ve also spoken about my celiac journey for the GLUTEN FREE GARAGE, GLUTEN FREE WELLNESS EVENT and the GEORGINA HOME & LIFESTYLE SHOW. All public speaking forums and all ways to motivate others that just because I was once terribly frightened by public speaking, a little bit of diagnosis and bravery can go a long way. Remembering that I still get butterflies and sweaty and gross when I have to go and speak publicly, but now it’s not crippling and now I recognize the possible reasons why.
If you suspect celiac disease GET CHECKED.
If your medical practitioner won’t check you of it. FIND ONE THAT WILL.
If being diagnosed with celiac disease and eating 100% gluten-free ends up corrections those things that were always written off as ‘shy’ or ‘mousy’, then why not take a stab at getting properly diagnosed?
It can’t hurt.
It can’t hurt you or your future.
As a diagnosed celiac, I don’t consider myself abnormal. There is nothing different about me that should change the way I feel about myself. YES I have to eat 100% gluten-free to maintain a healthy life and body, but thats normal.
Labels can be hurtful, and when diagnosed celiacs start to be called something the opposite of ‘normal’ then we have a problem.
What someone eats shouldn’t be a defining feature of a person’s ability to be normal.
It comes down, not to diagnosed celiacs calling themselves ‘not normal’ but others doing it. We all know it can be tough to see a child struggle to fit in with their class at a special occasion where a bunch of cupcakes come in to celebrate a birthday or a new case of Play-doh has just arrived. A child diagnosed with celiac disease needs to stay away from these things and there is an inherent responsibility from the parents to the teachers to the child themselves to know that.
It can be tough to install that in all partiers involved.
The severity of celiac is never apparent because it’s an invisible disease and the teachers might not see the effects when the child gets home. And the parent might not know a child has ingested gluten because the child is to scared or ashamed to admit that they did it.
CELIAC DISEASE HAS A LEARNING CURVE.
No one is perfect, but we all have to learn to live with it.
By telling children that they’re not normal because they have celiac disease or they can’t eat gluten and therefore can’t have the birthday cake is just wrong. A child with celiac disease is just as normal as the next, they just can’t have gluten. What someone eats shouldn’t be a defining feature of a person’s ability to be normal.
Its troubling when you hear a parent say “my little boy/girl wishes they could be normal and participate in a birthday in class”. Negativity is learned and who ever is creating that low opinion of a child diagnosed with celiac disease needs to stop. As with children, friends have to stop telling their diagnosed celiac friends that they’re not normal. It’s a trickle down effect that is the opposite of what celiac awareness is.
I have to eat 100% gluten-free to maintain a healthy life and body, but thats normal. Normal for me you ask? Yes, but I also have to eat fruit and veggies and get the proper vitamins and minerals as much as any other person without celiac disease. I just happen to not be able to digest gluten.
Telling someone they’re not normal because they eat differently just breeds contempt and anger. Children can grow up with a skewed sense of self and impose that on their everyday goings-on and adults can take that information and lash out with anger and create an entire different set of problems for themselves. Not just emotionally, but externally and create a bubble that diagnosed celiacs don’t need.
Diagnosed celiacs need to stick together, no matter what age, and correct those who might call them ‘not normal’. We are normal. We just have to eat gluten-free. Thats it.
If someone says you’re not normal, just correct them.
YOU. ARE. NORMAL.
There is always an organization hoping to find the cure for a disease, illness or ailment. Institutions like this are always for the betterment of civilization and that’s what makes the world a greater place to live; people helping people though tough times with the aide of science.
Science is truly an amazing thing. There is no way getting around that solid fact.
With so many immediate and more deadly diseases out there in the world needing more attention, it’s clear to see that celiac disease, one of the most common (and unknown and misunderstood) diseases doesn’t need a cure. Celiac disease is best described as; the body being unable digest or cooperate with the protein gluten, which in turns treats it as a sort-of poison. If you’re diagnosed with this disease, you know that there is a lot more to that, what, with its 200+ symptoms and varying amounts of side effects when you ingest gluten. The ONLY way to treat celiac disease is with a 100% medically diagnosed gluten-free diet. It’s as simple as that.
There have been products on the market that are made to attempt to make diagnosed celiacs believe that they can eat gluten-filled food by chewing a pill, or render the effects of ingesting gluten with a drink, but, they’re all wrong. The body doesn’t work that way, and science hasn’t moved far enough along to marry preventative measures with gluten-filled food.
Celiac disease is best described as; the body being unable digest or cooperate with the protein gluten, which in turns treats it as a sort-of poison.
There is no cure for celiac disease and there shouldn’t be one. There doesn’t need to be one.
After the initially diagnosis of celiac disease, it’s fairly common that you won’t feel better right away by going on a gluten-free diet. The body needs time to heal from all the effects of ingesting gluten for the number of years that you went undiagnosed. But, if you can fix or aide a disease with just diet; why do you need a cure? Out in the world many forms of cancer run rampant and destroy lives and families, thats where research can go to find a cure. AIDS, MS, Parkinson’s Disease, to name a few. All possible life threatening, all without cures. These are diseases that need cures.
By stopping and asking your individual self if you really need a cure for your celiac disease, you see that it’s only for selfish reasons; so you can eat “regular” food. By regular food I mean, eating out at a restaurant with no worry of your food being cross contaminated with gluten or being able to stop at any fast food joint to grab a burger when you’ve run out of time at the end of the day. Having celiac disease means having lost the convenience of food. Having celiac disease means constantly worrying about your food and whether of not it’s been contaminated. Having celiac disease means many trust issues surface at times of dinner. Celiac disease has more issues that just food, as you can see there are can be many internalizing issues. Food is at the top of the list.
There is no doubt that having celiac disease makes us all better problem solvers.
There could be reasons that an diagnosed celiac wants a cure so that maybe it’s easier to travel and that maybe you can eat out with no worry, or eat at restaurants while travelling and not have to worry. Looking for a cure to celiac disease really comes down the individuals ability to be prepared: Find out where you can eat while on vacation. Stay at gluten-free/friendly resorts. Take gluten-free snacks on the plane. Travel can be scary for people with celiac disease, but as long as you plan ahead, everything will turn out okay. A cure does’t need to be in place to fix all that.
You don’t need a cure for celiac disease just so you can eat canned soup and not worry about it. There is already a method for controlling celiac and keeping your body safe and that’s with a gluten-free diet. Yes, it can be tough to see a child struggle with not understanding why they can’t eat the cupcakes brought into the school by a classmate or play with the Play-Doh. Those instances is what makes celiac disease unique. By finding alternative ways to eat and be creative about our celiac and gluten-free lifestyle we find ourselves creating better building blocks for who we are and how we grow as individual people. There is no doubt that having celiac disease makes us all better problem solvers.
Celiac disease is the calmest of the diseases across the spectrum. It’s never ideal to be diagnosed with it, but it’s better than having an immediate, life threatening and deadly disease. With celiac disease, your body can sometimes be totally against you, but it’s treatable, and in the simplest way: a gluten-free diet.
The treatment of celiac disease with a gluten-free diet is there and the support system of the celiac/gluten-free community is there, families, friends and loved ones are there, so finding a cure for celiac disease should be in the back of our minds.
No one has to agree on how they feel about their own individual celiac diagnosis and own state of being within their communities sharing the disease. Somedays it’s hard to live with celiac, somedays its all rainbows and puppies and somedays, after years of being diagnosed and developing a rhythm and knowing how your ‘new’ life goes, celiac disease is second nature and just a part of your daily routine. There doesn’t need to be a cure for celiac disease, just an understanding that, things could be worse, only they’re not.
There doesn’t need to be a cure for celiac disease because it’s one of the things that makes you unique and thats a good thing. Which in turn makes celiac disease… a good thing.
The views expressed above are of my own views on the subject of a cure for celiac disease. Every single person is well within their right to feel 100% different from what I think. By reading the above article, you can plainly see that I don’t feel the need for a cure for celiac disease. I understand if you don’t feel that way at all. We’re all entitled to our own opinions and thats what makes our world great.
I’d love to hear what you have to say about it. Email me at firstname.lastname@example.org and tell me about it.
Gluten is hidden in every kind of food you can imagine. When you look at it, the list is gigantic. Not just food, but beauty products and deodorants and even in glue for the crafts with the kids.
Gluten, gluten gluten. Saying those words and people get caught up in the ‘fad’ that is the gluten-free diet. Individuals that are on the gluten-free diet for non-medical reasons never have to worry about cross contamination. And that’s where it is.
The cross contamination of ONE crumb of gluten. One speck; the size of a pencil point, of an average type wheat based bread can send the body of a diagnosed celiac into a frenzy and trigger over 200 symptoms (ranging from mad poops, brain fog and even acne). Cross contamination is the second thing that diagnosed celiacs have to worry about, the first being whether the food we’re eating is actually gluten-free. If celiac’s aren’t worried about the food in front of them, they’re usually worrying about the food around them. It can be a vicious cycle.
That mentality is something that a lot of people don’t understand. That’s why celiac awareness is so important. Educating the public about celiac disease and informing those who live with us about the harmful effects of cross contamination and intentional/accidental gluten ingestion.
It’s a fact that some diagnosed celiacs live in shared food households. Situations like that can’t be avoided for reasons that aren’t anyone’s business, but when issues of cross contamination and constantly dodging bread crumbs on the kitchen counter become a daily problem; switching to an ALL gluten-free household might be the next logical step.
‘Never having to say you’re sorry’ is a great little saying to throw around when it comes to the people that you live with. But, have you ever considered saying ‘never having to ask someone to use a separate utensil to spread the sour cream’?
A simple and effective way to avoid gluten cross contamination is by using different utensils every time you dip into the peanut butter or the mayonnaise. When one person in the house has celiac disease, a very serious illness, that can only be treated with gluten-free food, this path to maintain a healthy life is very easy too do. After laying out the rules and the ground work for this procedure the percentage of gluten cross contamination diminishes.
By being a diagnosed celiac in a shared food house hold, you become your own mega-advocate and spout off what should be done about gluten-free food, your symptoms and the dire effects of ingesting gluten is like due to cross contamination. It’s when this simple rule isn’t followed that the blood boils. Witnessing someone across the table use the same spoon to spread sour cream on a flour based tortilla shell and place the spoon back in the container like there was no care in the world. Ignoring the ONE SIMPLE RULE in place to protect you.
In these types of homes celiac advocacy is important as much as it is in the public. Start locally and move on to the world. A diagnosed adult can speak for them selves, but a child with celiac might not be able to stand up and say that kind of behaviour isn’t right. A simple rule like using a different spoon can mean the difference between having a great day, or spending the next few hours in the washroom with mega-poops and the next week feeling weak, sore and tired, possibly missing work or school or social gatherings or family functions.
Is it ignorance? Forgetfulness? Sometimes, the truth is never known.
Shared food households are common and they do work. Sometimes they need a little work. No one is perfect and what works well for one family might not work for the next. As long as there is someone in the home who supports and aides in the food rules like a wife, husband, sister or mother then the ride with celiac disease and shared food households goes a lot smoother.
Everything takes time, patience and practice. Even with celiac disease. Especially with celiac disease.
When I tell you I have celiac disease, don’t stand there and stare at me like I just told you a joke. As far as some individuals know; celiac disease is something a lot of people made up and are using as a scapegoat to squeak by in life. The big joke, the big cosmic joke is that celiac disease exists. I don’t have a serious or deadly peanut allergy or an urgent shellfish allergy and so, I don’t look sick or like I’m dying when I ingest gluten. But rest assured, my disease is potentially just as serious.
I don’t look sick because I eat properly. I eat 100% gluten-free. It’s the only way to keep my diagnosed celiac disease, and every other person diagnosed, in check.
I AM sick, I do have celiac disease, it’s just all in order now. I was only diagnosed in 2008 and was eating all the WRONG food. I don’t eat the wrong food anymore and I check/watch/read every label and after years of maintaining a proper gluten-free diet, I am a lot healthier.
For a diagnosed celiac; celiac disease isn’t just about one month of awareness (which is MAY of every year), it’s a daily defending of a disease that not a lot of people take seriously. Celiac disease isn’t just a conference at the end of the week or every month, it’s a gathering of like-minded and like-bodied people sharing new ideas and new discoveries with a lifestyle the general public sometimes views as inferior. It’s a not a disease that was created by pesticides or GMO’s, it’s been around since long before you or I were born.
It’s not about throwing it in everyones face, its just about positive reinforcement that celiacs are normal, happy and amazing people, regardless of what the media or popular culture says.
Celiac is an invisible disease and those people with it have to constantly defend it. Almost constantly having to point out the reasons they need to maintain a gluten-free diet. It’s a bout health, not fad diets or food ridicule. Media stars are out there telling an audience that it’s trendy to have celiac, making it harder and harder to for us to have said celiac. We have to stand on the highest rooftop and own celiac like a boss and tell them all the deal, the real deal. Celiac disease affects every gender and can possibly affect anyone without them knowing it.
No, having celiac disease isn’t just about food, but it’s a big part of who we are as individuals and a big part of how we try to be accepted as regular people attempting to adapt into regular food-type situations: parties, restaurants and dinners are all the same public missions that celiacs handle weekly and internalize privately. Celiac disease is an every day thing that can be a hard struggle for those who don’t have those around them who support them. That’s why celiac disease is an everyday thing, celiac advocacy is an everyday thing.
Celiac disease is misunderstood at the best of times and only through constant promotion of how normal we are and how unusual our disease is can we create the kind of positive awareness that ALL celiacs deserve. Yes we need to eat 100% gluten-free, but we can also be 100% fun and normal, the only thing different about a celiac is that gluten is a poison to our bodies and we need to stick to a specific kind of diet to stay healthy.
If every 1 out of 133 people has celiac disease, then the understanding of this disease could probably be just a little better and more accepted. Support for it could stretch past those who already have it and those who are directly affected by it, like family and friends, so take the awareness seriously. It’s not about throwing it in everyones face, its just about positive reinforcement that celiacs are normal, happy and amazing people, regardless of what the media or popular culture says.
Celiac disease is going to be around a lot longer than you or I; as much as it’s been around before you or I. So lets say ‘hello’ to celiac and give it a high five. And we’ll use everyday of EVERY month to celebrate our celiac awareness.
I have celiac disease, ask me about it. You might just learn something.
Knowing that no diagnosed celiac is ever alone is a great thing. Celiac disease isn’t rare, so finding someone who understands anything about it to some degree isn’t very far. In fact, if 1 out of 133 people is has it, then chances are someone in your extended family does, or someone at your work place does, maybe even someone in your school. Just knowing that you’re not the only diagnosed celiac in the world is a good thing. Being equipped with that knowledge can take you far.
It takes some time, and patience to bring about positive awareness to celiac disease. If you’re not doing it for yourself, you’re more than likely doing it for someone you care about. That’s an amazing thing to stand up and tell the world that you have celiac disease or your husband has celiac disease and YOU do the advocating for them. YOU create the awareness by making sure that gluten-free options are available at the company dinner and they are labelled accordingly. It’s that type of selfless act that reminds celiacs that they’re definitely not alone.
Celiacs are never alone. In a world that can be filled with negativity and all you want to do is punctuate that you need to eat 100% gluten-free and that the food has to be 100% non-cross-contaminated with wheat, rye or barley crumbs; that idea can be troublesome. Stretching out your arms and your feelers and letting people know you have celiac is the basic elements for celiac awareness.
One time, many years ago as I was starting to get into this whole King Gluten Free thing, I frequented local shows. I had my booth and sold t-shirts and had a poster that said ‘KING GLUTEN FREE’. In those times, not a lot of people stopped to talk. Not a lot of people were to interested in what I was doing there. No one seemed to really care. I wasn’t selling food, I was selling kingglutenfree.com and no one was biting.
At one show, I stood there. No one came to talk to me, they only talked at me. gluten-free this and gluten-free that. And when I brought up my diagnosed celiac disease and the severity of it, people nodded an walked away. This was late 2013 when I was still just a baby in the celiac awareness game.
At the end of the show something happened.
A kindly old gentleman with worked in hands and a ruffled baseball cap came up to me in my booth and started to look around at my sign and my t-shirts which read ‘gluten free like a boss’ and looked me up and down. He leaned into me and said “at least you’re here bringing awareness to it” and then walked away.
At the time I thought he was just being polite and came over to see me as I stood a lone and no one was truly engaging with me. He left his homemade jam and candle booth to see me and be a gentleman, but as it turns out, I heard through the grapevine, his son was a diagnosed celiac.
While sometimes it might feel that we, as celiacs, are alone in the world, but when we have someone like this old farmer happy to see someone is creating awareness for his son, you know we’re not alone. No celiac is ever alone, it’s just that maybe sometimes we have to find that one person, or people, who stand with us and support us. That support can come in many forms: love, attention, advocacy but there is never a wrong way to support a fellow celiac or a loved one with celiac.
Lending show of support to a person diagnosed with celiac disease lets them know that they aren’t alone. In a time when celiac disease is shuffled off or often confused with a gluten-free fad diet or fake, made up disease, having a non-diagnosed person in your corner lift you up can be the best thing of all. Acknowledgement can go a long way. And that acknowledgement can stretch as far or as close as a Mom or dad or sister, cousin or cafe owner. Support is support.
No celiac is ever alone, and that one man created my faith in that statement, whether his son knew about it or not.
For the sake of argument, lets say that a child is anyone below the age of being a teenager. It’s much easier to establish a child as a person who needs to be taken care of by their parents or guardians for prolonged periods of time.
There are people out there that do what they can to spread the word about celiac disease. There are individuals out there that advocate about the severity, importance and seriousness about celiac disease. They do that for the people who can’t or won’t do it for themselves. Creating a little celiac disease awareness goes a long way for those who don’t have a voice, and that’s why parents of a child diagnosed with celiac disease are the biggest and BEST celiac advocates out there.
No one cares for their child more than a parent and that’s why they are the best advocates for celiac disease. Children born with celiac disease or diagnosed early in life, need that one person, or two people to get out there in the community and educate those around about the severity of celiac disease; about the dangerousness of what crumbs of bread, a small amount of gluten can do to their child. Parents are the greatest raisers of celiac awareness.
As a parent of a diagnosed celiac, it can be tough to see your child struggle to fit in or attempt to be a part of the crowd when food is being served at a birthday party, but because the parents are the true champions, you know that gluten-free food is being handled and served properly and safely and that the question of celiac disease is being raised with positivity.
There is no shame in telling other people that your child can’t come to a party because you’re concerned about the food and how safe it might not be. The job of any parent is to protect their child and make sure they are safe. Even if it’s from food, or other less-than-diligent parents at parties. It’s also absolutely fine to send your little boy or girl, who has celiac disease, to a party with their own gluten-free food. There is no wrong way to take care of your child who has been diagnosed with celiac disease. As a parent, there is no wrong way to make sure they are safe.
Children teaching children about celiac disease can be daunting. I’m not a child or a parent of a child with celiac, but I know what I was like as a young dude and can attest to the fact that trying to live, grow up, in a world where everything is challenged and looked at with a negative eye, it must be difficult. Bullying, peer pressure, the mob mentality; there is a lot that can go wrong when trying to grow up with celiac disease in a world that still. doesn’t. it.
There are things that can go wrong, but the parents and guardians are there for the support that every child needs. Parents have every right to flex their muscle (so to speak) when helping their boy/girl get along. No one has to be the same as the other, no child has to fit in anywhere, they just have to be themselves and do whats right. That’s where the supportive and nurturing love of family comes in. By your example, little Billy or June will grow up with a better acceptance of who they are and who they will be as they get older.
No one says parenting is easy. Throw in the barely understood celiac disease and you’ve got an extra hurdle.
If you, as a parent are understanding of their disease, they in turn will be understanding of what life has to offer them. It always starts with the parents. Parents are the people they look up to. Adults are the ones who are supposed to lead them through life. With positive thinking, reinforcement and love, it’s all good. Celiac Disease or not.
As I sit across from you, why wouldn’t you think that I don’t take my celiac disease seriously?
At no point should the people in your home question the reasons you are gluten-free if you have celiac disease. The ones who reside with you (it can be anyone. Not just partners, but children and sisters and brothers and mothers and sisters) are the ones closest to you and need to know how serious celiac disease is.
The choices diagnosed celiacs make in their home is based on the very simple reason that they need to be healthy. This includes everything from separating the gluten-free food from the regular food or scooping separate jar of peanut butter for later consumption (to avoid cross contamination). Every step taken by a diagnosed celiac has a premeditated plan: STAY HEALTHY.
Aside from having to eat 100% gluten-free, diagnosed celiacs are just regular people. When I say choices made, I don’t mean going out and smoking a whole lot of crack, I mean making sure that the canned kidney beans made in the communal chilli is gluten-free or that regular bread-type crouton aren’t in the teaser salad at the table. The life of a celiac in the home can be great and it can be bad.
There are no rules in the home to follow for celiacs. Some homes are 100% gluten-free and some are shared food homes. It all depends on how you feel. No two celiacs deal with heir disease the same. And thats ok. There is no definite book or rule to live by when you have celiac disease.
Cross contamination happens. Sometimes when the table is filled with various types of food, it happens. That’s why it is extremely important to know what is happening at the table and what is happening with the other plates:
Sure, having a 100% gluten-free home could eliminate questions and potential problems like this, but sometimes you can’t always have it that way.
That’s why is important for all the people in your home to understand the severity of cross contamination and what celiac disease is. Shuffling off the crumb in the broccoli as ‘maybe something else’ isn’t the answer. If a diagnosed celiac suspects that that ‘something else’ is in fact a crumb of bread from someone else at the table, believe them. When it comes down to it; it’s not about the food getting eaten or making sure all the food at the table is eaten, its about the health of the celiac.
Cross contamination is real and thats why there is AND should be a huge emphasis on it in shared food households. Everyone in the house has to be on board with what a celiac is putting down. If the others in your home choose to be ignorant to this fact, then there is an issue. Is it trust? Is it neglect? These are questions that you have to ask yourself when your VERY SERIOUS disease is shuffled off at the dinner table. Shuffled off by the people who are supposed to care for you.
Yes a crumb will hurt me. No I won’t just eat around it.
I have celiac disease, understand that this is my life and you have to get on board with it’s severity. Being 100% gluten-free isn’t a fad to me, it’s what i need to actually survive, to be healthy and to ultimately be happy.