Top 5 Things People With Celiac Disease Need to Stop Doing NOW

1. Stop fighting with your fellow Celiacs. 
We are all trying to do the best we can while living with our individual diagnosis and trying to navigate the gluten-free waters. Yet I see hurtful and hateful comments, posts, tweets, etc. on a daily basis from people in the celiac community. It is so awful that I am beginning to think that being mean and rude is a symptom of some people diagnosed with Celiac. There is an old saying "If you have nothing nice to say, don't say it." I wish the mean celiacs, disgruntled business owners, and popular bloggers would just keep their mouths shut rather than go out of their way to say hurtful things to one another.

Being bullied for having celiac is bad enough. Being bullied by someone with celiac is even worse! This is a tough enough diagnosis for many of us, but you spewing your hate publicly via social media and in comments and privately via emails is not helpful at all. I have actually stopped reading about 95% of the blogs I subscribe too because I find things to be just too negative. Comments are even worse sometimes and just make me sad.

2. Stop trying to push your "treatment" on others. 
As I have said many times before, my celiac is not your celiac. While I am happy that you have found solutions to heal your pain, it may not be the best treatment for me. I tried supplements for a while, but they didn't help me me. I would never purposely eat gluten after taking a "miracle pill" yet I have been pitched at least five pills in the past year. I also don't want to know what charcoal, wheatgrass (yes, really), pH balancing concoction you take after you get glutened. I am probably too busy puking to drink it anyway. My celiac is my celiac and my way of dealing with being glutened is up to me, not you.

3. Stop trying to get me to eat foods I am not comfortable eating. 
I cannot physically tolerate gluten-free oats. (Read more here.)
I do not feel comfortable drinking gluten-removed beer that is derived from barley.
I am anaphylactic to shellfish.
I know the difference between Celiac as an autoimmune disease, an anaphylactic allergic reaction, an intolerance, and a personal preference.

My choice to not eat certain foods is MY CHOICE. Yet I once received hate mail from a store owner in NYC that said I am biased and only show one side of the food story. I also had a demo person at a GF expo stop talking to me and turn her back on me when I told her I did not consume oats and therefore could not eat their cupcakes.

Does a person with a deadly peanut allergy need to post about the pros of eating peanuts on their site?
Does someone who is Kosher need to post a recipe for a bacon cheeseburger?
Does a vegan need to post about their new pork recipe?
NO!!!

Then why do I have people tell me I should eat Cheerios because they are fine when they eat them. This is my blog and I will post what I want when I want and how I want. If you eat oats or sell gluten-free beer in your store, good for you. I am may be a potential customer, but I am not wrong because I choose not to eat those products. You are wrong for trying to force me to buy and consume something that is not good for my body.

4. Stop plagiarism. PERIOD.
Many times in my blogging career, I have found posts online that are my words, my thoughts, and even my photos that were claimed as their own. Gluten-free recipes are stolen all the time and claimed as "originals." Almost weekly, I hear about another blogger getting ripped off. I have been ripped off by both bloggers and even GF companies using my original work as their own. I work hard on my content. When another blogger takes our content without asking, it is very upsetting not to mention illegal. Unfortunately, this isn't unique to the celiac blogger community but to anyone that publishes content on the internet. Just stop doing it. It's not cool and you will get caught.

Oh, and this goes for using a trademarked name as well. Yes, someone is trying to pass themselves off as Gluten-Free Globetrotter® (my other website) on social media. My brand is legally trademarked with the USPTO. Legal action is pending... so disappointing.

5. Stop being a careless celiac and then bragging about it on your website. 
When you publish to the internet and make your post public, anyone can read this post, tweet, or see your photo. This means a person diagnosed with celiac today might be reading your post or someone that was diagnosed more than 35 years ago, like me, is reading your post.

When a blogger or social media influencer writes: "I just wanted to taste that [gluten-filled] food and I will deal with consequences later," you are diminishing the fact that gluten can gravely damage someone with celiac disease. Not to mention, you are knowingly triggering an autoimmune response in your body. A newbie might not yet have enough information to understand this yet which is why they are reading your blog in the first place.

While I know you might think I am contradicting my own previous comments here in #5, I do think there is a responsibility of being a public voice in the celiac disease community. The person knowingly eating gluten and blogging about it makes it seem "allowed." The Instagrammer who continuously posts food that has a high-risk of cross contamination (and tags it so) yet also says they are gluten-free could put someone in seriously jeopardy health-wise. The person who has a celiac twitter handle that says "I just ate at XYZ and I know I will pay for it later but it tasted so damn good" is being careless. I just want you to think about who might see your comment before you post to the public. And yes, I am going to heed my own warnings on this one too.

This may be a bit negative for my audience, but it is something that has been brewing in my mind for a very long time. I have been living with celiac disease for more than 35 years and have been blogging for close to ten years. This community has changed dramatically over time both for the good and the bad. I would like us all to help make things BETTER not WORSE. I would love to read your comments below. Feel free to post your name or post anonymously. It's up to you!

Happy 33 Years of Celiac Disease to Me!

I was diagnosed with Celiac Disease in 1981. I do not remember the exact date of diagnosis because I was just a toddler. My parents didn't remember the exact date either because I think they chose to block out how sick I was back in 1981. I was in the hospital for about a week before I was diagnosed with Celiac Disease being poked, prodded, and tested for everything imaginable. By the end of my week at the hospital, I was diagnosed with Celiac Disease and told to go 100% gluten-free forever. I was told that it was a disease that I would not grow out of at any point. I truly believe this diagnosis and my move to a permanent, life-long gluten-free diet saved my life! Too many people I've met were diagnosed as children and told they would outgrow Celiac. If you are diagnosed with this disease, you will NOT outgrow it. Do NOT believe a doctor who tells you otherwise.

Since I don't have an exact date, I am using today as my Celiac anniversary. While at my mom's house a few months ago, I came across my medical records from my childhood. This was one thick folder! As I was flipping through the pages, two entries caught my eye. Both of these entries were from July 1981 and both documented my Celiac Disease for the first time. I believe somewhere in early 1981 I was in the hospital when I got the actual diagnosis. I was between 2.5 and 3 years old at the time of diagnosis. My pediatrician did not diagnosis me, a specialized pediatric gastrointerologist named Dr. James Markowitz diagnosed me with Celiac Disease. At the time, he was a resident and younger than my parents. He did tell my parents this was a rare disease and the only "cure" was a gluten-free diet. Thirty-three years ago, this man knew more than many doctors know today!

It was exactly thirty-three years ago today, that Celiac Disease was written for the first time in my medical charts. Let that sink in for a minute people.

I HAVE BEEN LIVING WITH CELIAC DISEASE FOR 33 YEARS!

People often think their lives are over when they are diagnosed with Celiac Disease. But I was just around 3 years old and my life was just beginning. I was going to grow up with this disease. There was no avoiding it.

My medical records from 1981.
Click on the image to zoom in. 

I am not sure why, but seeing these documents made me feel emotional. I guess seeing my diagnosis in writing from so many years ago made me feel like I really have Celiac Disease. I mean, I always have known that I am living with Celiac, but I don't remember my actual diagnosis. I was too young and I am sure the whole process was very traumatic to me at such a young age so I blocked it out. Growing up with Celiac Disease, I do not remember anything but living a gluten-free life. This is me. This is all I know.

Celiac Disease has defined who I am for almost my entire life and not in a bad way. I have always been an advocate. I created brochures about Celiac Disease in second grade. While I shied away from talking about Celiac in my teens, I grew out of that embarrassed stage. I started gluten-free blogging in my 20s with Gluten-Free Fun. I also became a support group leader in my 20s when I became the lead organizer of the NYC Celiac Disease meetup group. And as if I wasn't busy enough in my leadership and blogging, I launched a second blog called Gluten-Free Globetrotter in my early 30s. I realized that Celiac Disease was with me for life so I chose to embrace it instead of hiding it. I had a lot to contribute to the Celiac community as someone who grew up with this disease. I wanted to show people that life could and will go on post-diagnosis. Today, I am a strong advocate in this celiac community and this makes me very proud!

Celiac Advocacy from 1986! 

If you know me either in person or from reading this blog, you know that I do not let Celiac Disease stop me from doing anything. I travel extensively. I dine out. I am in a relationship. I have friends and family that love me very much. I go to work every day and travel for this job 6 time a year. While I have been glutened like the best of us, I still live my life the best way I can every single day. I just happen to have Celiac Disease.

I do not use Celiac Disease as an excuse. I try not to blame Celiac for every little ailment I have although I realize it is probably part of the reason that my immune system is sometimes compromised. I am not threatened by this disease. I see food as my medicine, not my enemy. I am not isolated by my diagnosis. I do not fear life. I embrace life, my Celiac Disease just happens to be part of that life. 

I am who I am and much of what has defined me in life is due to my Celiac Disease. I am no longer ashamed. I hope through my leadership, advocacy, and blogging, I can encourage even just one person that life can go on after a diagnosis of Celiac Disease. I believe I have been successful with the numerous emails, tweets, and in-person thanks over the past 7.5 years of blogging.

Thank you all for your continued readership, support, and friendship. It really does mean the world to me! Please share this post with others, especially those who were recently diagnosed with Celiac Disease. I would be so happy to connect with them and give them encouragement!

Happy Celiac Disease anniversary to me! 

Now who is going to give me some gluten-free cake to celebrate? :-)

Gluten-Free Fun: My Celiac Story

This story was originally written for a blog that is no longer active so you cannot read the whole post. I thought I would republish my story to share my 32 years of living with Celiac Disease with my Gluten-Free Fun readers.

Me, right around the time of my celiac diagnosis

Gluten-Free Fun: My Celiac Story

My Celiac story is longer than most, spanning more than 30 years. Although it was a long and bumpy ride at times, I truly believe being gluten-free for almost my entirely life and having Celiac Disease molded me into the person I am today.

I was a very sick toddler. I stopped growing and, I was not thriving as a 2-year-old child should. After months of visits, my pediatrician told my parents that based on my symptoms my illness could be anything from irritable bowel syndrome to giardia. In early 1981, I started seeing a pediatric gastroenterologist on Long Island, NY. I spent close to a week in the hospital and went through a battery of tests, eventually diagnosed with Celiac Disease. My doctor at the time was 29 years old, only one year out of his residency, and responsible for changing my life forever. I was discharged from the hospital and my gluten-free life began immediately. Within weeks, I started growing and acting like a normal toddler.

Being only a toddler, my parents were responsible for navigating the scarce gluten-free scene and were desperate for knowledge and safe food. They were at a loss as to where to turn for help. There was a lot of trial and error with getting me safe meals. My doctors did as much as they could to guide my parents, but they still felt alone and confused about raising a gluten-free child. Remember, this was 1981. There was no internet and researching gluten-free diets and finding a support community was a difficult feat. It wasn’t until the early 1990s that we even found our first support group. Today, I run the largest Celiac Disease Meetup group in the world. My how times have changed!

In kindergarten, my gastroenterologist decided to give my parents the option of giving me a gluten challenge. During this challenge I would be able to eat any foods I wanted, even ones containing gluten. I vaguely remembering talking to my teacher and telling her it was ok for me to eat pretzels and cookies for one day only. Needless to say, I was extremely sick and bed-ridden for the days following. My parents agreed with the doctor to keep me on the gluten-free diet forever since I would not outgrow Celiac Disease. There were so few gluten-free items available locally so my mom started ordering my food by the case from Ener-G Foods. To this day, she still has a separate freezer that is stocked with gluten-free food when I come to visit.

Throughout adolescence, my teens, and my college years, I found sticking to the gluten-free diet to be very challenging at times. Looking back, I think my lack of knowledge of the long-term damage of ingesting gluten as well as my personal youth rebellion  lead me to “cheating” by eating gluten-filled food. I was probably worst during my college years because I felt like the college cafeteria could never safely cater to me. I was one in thousands so why should I ask the kitchen to prepare special foods for me. I got terribly sick with mono at the end of freshman year and I fully blame it on my horrible diet. I was sick for days on end and sophomore year I lost a ton of weight because I was so ill. By junior and senior year, I no longer ate in the cafeteria and I was getting back to being healthy again. I am in awe of the gluten-free options I see for college students today. I wish I had those meal plans and options when I was away at college in the late 1990s.

Fast forward about five years after college when I started working and living in New York City. Although I had been gluten-free practically my whole life, I realized I longed for a gluten-free community to socialize with in the city. In 2003, with the help of the internet, I discovered the New York City Celiac Meetup group. In August 2006, I organized my first dinner for the group, becoming the lead organizer a few short months later. Now more than five years later and with close to 200 events under my belt, the NYC Celiac Meetup group is over 1650 members and I truly have found my gluten-free community.

In 2007, I started my blog Gluten-Free Fun as a way to show the world that being gluten-free should not stop you from living your life. As someone who grew up with Celiac Disease, I wanted my readers to realize that life is not over at your diagnosis. I usually like to keep my blog upbeat and informative, while being honest with my readers. I am by no means a medical expert, but I write about my personal experiences and stories about people I meet. I also include product reviews, restaurant suggestions, and more. I love the interaction I get with my readers through the blog, Facebook, and Twitter. I have met some really wonderful people through my blog and I wouldn’t exchange that for anything.

In 2011 while in the Czech Republic, I launched my second blog Gluten-Free Globetrotter. This website combined my two passions: being gluten-free and traveling. Although I had gone on family vacations my entire life, I really embraced travel about six years ago. When planning a vacation, I spend a lot of time not only researching the top attractions but places I could safely eat gluten-free. I not only wanted to share this information with others, but also wanted to encourage those with Celiac Disease to travel the world and not be scared about eating gluten-free domestically and abroad. The blog is just shy of a year old and I am still really excited about my Gluten-Free Globetrotter website. I just wish I had more time to travel and explore gluten-free options around the world!

Growing up gluten-free wasn’t easy and I took a long time to truly accept who I am as a person with Celiac Disease. As an adult, I know now I have a unique perspective of growing up gluten-free in a gluten-filled world for the past 30+ years. I am passionate about sharing my gluten-free experiences and expertise with others. If I can help just one person through my leadership of the NYC Celiac Meetup group or through my two blogs, then I feel like all of my time effort is worth it.

Erin Smith

gfreefun@gmail.com