Help Create the Faces of Celiac Disease

who has celiac disease?

Over 3 million Americans and millions more around the world suffer from celiac disease (a staggering 83% of them undiagnosed). Are you one of them?

This is a real disease affecting real people folks. It’s not just about eating gluten-free. Yet sadly, our disease has been hijacked by the media looking for a story, by late night comedians looking for a joke, and by corporations looking for a profit. But celiac is not about them. It’s about US. It’s about the 1 in 133 who suffer from this autoimmune disease.

So what better way to raise awareness than to show the actual faces behind the disease. To build a wall with our pictures and our stories to show the world.

Please do your share in raising awareness by adding YOUR FACE and YOUR STORY. Just fill out the simple form below and I will take care of the rest.

To help lead the way, here’s how I’m filling out the form: My name is Gluten Dude. I was diagnosed with celiac disease in 2007. Celiac disease is so much more than eating gluten-free.. (And you’ve already seen my ugly mugshot.)

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    21 thoughts on “Help Create the Faces of Celiac Disease”

    1. I started noticing small problems around 2007 but the more serious effects of Celiac Disease started interfering with my life around 2009. Most doctors told me I was “getting older” or “it’s stress”. I was finally diagnosed in 2012. It took a year and a half of bi-montly (sometimes weekly) doctor’s visits, handfuls of supplements a day, and a strict gluten-free diet to get myself back to reasonable health. It is still a struggle because one accidental exposure leaves me messed up for around 3 months with gastrointestinal problems, migraines, fatigue, brain fog, depression, anxiety, and the works. Celiac disease has made travel and visiting other’s home difficult because of cross-contamination concerns. The constant diligence required to stay healthy is exhausting. Feeding myself takes up a lot of time because I have to make most of my own food from scratch. I am a field biologist and had plans to go into a research career but the fatigue and maintenance that goes along with this disease has forced me to seriously alter my lifestyle and plans in order to stay healthy. Although challenging sometimes, eating gluten-free is the easiest part of dealing with this disease. The impact it has on your activities and social life are the most difficult. Fortunately, my family and friends are very supportive. There is a real need for understanding and support for people that deal with Celiac Disease and other food related illnesses. If you don’t have a support group in your area, start one. It will be such a great help to you and so many others. We are not alone and we can help each other.

      1. @ CR: What a great idea to start a support group! I think I am going to try to start one in my area. Celiac can be a pain in the you know what, but it also makes us more aware of what goes into our bodies. I have become very aware of what I eat and drink now, and I am so much healthier than I used to be. No more constant headaches, digestive issues, or rashes. My friends and family now understand that making jokes about “gluten free people” are inappropriate, and they have a new respect for those of us who have Celiac.

        1. Lauren,

          I did just that! We have had 3 meetings so far and people (myself included) are so happy to have somewhere to discuss our issues. The group is not limited to Celiacs but is open to anyone that has to eat gluten-free for medical reasons. We’re hoping to effects some changes in our community by raising awareness as a group about Celiac Disease and the need for truly gluten-free options.

          I started by scheduling the first meeting to give myself motivation to get into gear, set up a Facebook page to share helpful information (such as Gluten Dude’s blog), and contacted the local paper. They announced the meeting in the community events section and did a short write up which was followed by a feature article in the following week’s paper. Talk to your local library, food banks, grocery stores, etc. to help get the word out.

          We’ve not affiliated with the larger organizations mainly because the limit what information you can share and you have to get approval for special guests, etc. but I find their guidelines for group facilitators handy. I would also suggest finding a co-facilitator so it is not all on you and setting up a separate email account for the group.

          Some of the things currently in the works are plans to talk to local restaurants that offer GF foods about better kitchen practices, guest chefs to do cooking demonstrations and answer questions about cooking for special diets, nutritionist to talk about nutrition problems that are common with a gluten free diet, and a natural doctor to talk about testing and common related issues, etc.

          Good luck!

      2. I feel your pain. I have severe Celiac also and end up in the hospital if I get poisoned. I’m giving up processed gf food. It’s too expensive and I still feel like crap. My family and friends are very supportive. I’m lucky in that aspect. But this disease has taken a toll on my brain, my skin and my muscles and stamina. Take care

      3. I agree with you, I was just diagnosed in March of this year. Dealing with brain fog, fatigue,headaches, muscle joint pain and also having to take care of my two little boys. Learning how to cook gluten free and not feeling better by it but only getting worse!! Am at the stage where everything angers me. Hope I can get through this!

        1. Lizbeth, just reading your post, I am so sorry to hear of your struggle. I hope you are doing better and found an answer to your situation. I had that happen a few times finding what was affecting me each time (grains and gf processed foods were my first ones) thanks to Celiac groups, then had a set back, it felt like I just couldn’t get out of that hole. I finally found an Internal Medicine doctor who also had a functional medicine practice and found food allergies that once taken out of my meals was a game changer. Of course the repercussions of many years of not being diagnosed, my villi had flatlined something each doctor was amazed letting me know they had never seen this stage, had its effects but I am working on continually working on getting better.

    2. This is a reflection I recently completed about my Celiac journey:

      I had stomach pain, was throwing up, having brain fog, experiencing chronic fatigue, joint pain and various other symptoms for almost 2 years. Nobody knew what was wrong for a long time and numerous test had to be done until I was eventually diagnosed with Celiac Disease in September 2011. Since going on a gluten free diet, I have been feeling a lot better and all the previous symptoms I had before are now gone (besides the times I accidentally consume gluten and on off days, which is common for Celiacs to have) The gluten free diet without a doubt saved my life as I could have eventually died if I didn’t start the diet when I did.

      However, it has been very hard to avoid gluten at times, especially in the beginning of my gluten free journey. When I eat out, I sometimes get “glutened” (a term used to describe accidental gluten consumption) is more frustrating than anything, since it ruins the experience and can be a headache for everyone involved. Thank goodness this has improved over time and more and more restaurants are gluten aware and understanding. I have also leaned that if you buy products that are NOT marked gluten free, you are putting yourself at risk of getting “glutened”. Even if wheat, barley, rye and/or oats are NOT on the back of the package, (all these items contain gluten) you cannot guarantee that it is always safe to eat. I have learned this lesson the hard way over my journey. Even up until recently, I have discovered that I was accidentally eating/taking products that you won’t even remotely think had gluten in them. These include certain types of medications, gum and even mouthwashes! Before discovering this, I only had to worry about gluten in food- not knowing it can be in just about anything! Other surprising things I have discovered that also contain gluten are certain kinds of toothpaste, shampoos, and lip balms. I learned this the hard way as well. I’m sure for many years to come, I will still be learning and making new discoveries throughout my journey.

      Even though living with Celiac has been hard at certain times, a lot of positives have come out of it. These include being a lot healthier. If I didn’t have Celiac, I would probably be eating poorly and wouldn’t be taking my health as seriously as I am now. Celiac has helped me to realize that taking care of your health is super important and that you should never take it for granted. My diagnosis has also helped other family members as well. Since learning the benefits of a gluten free diet, two of my Aunt’s decided to follow the diet. They both have a few auto immune diseases/disorders such as lupus. Once on a gluten free diet, their symptoms for their auto immune diseases/disorders have greatly improved and both are feeling a lot better health wise- they no longer have dry eyes, are sleeping better, have more energy and various other health improvements. If I wasn’t diagnosed with Celiac, it’s quite possible they wouldn’t be interested or even have heard about the gluten free diet. Having Celiac has also allowed me to appreciate the little things in life, to be grateful for everything I have and to have a better and more positive perspective on the world. It has also helped me with my faith as well. Had I not been diagnosed with Celiac, I would probably not be in the place spiritually I am now. This is so because having Celiac has taught me to be strong, disciplined and committed. In order to grow and develop in your faith, I have learned through personal experiences that you have to be proficient in all these areas.

      Overall, having Celiac has been a blessing in disguise and despite all the hardships and struggles, the goods have outweighed the bads. I plan on doing my part and giving the Celiac and Gluten Free Community as much help, knowledge, and support as I can for years to come and so people who are newly diagnosed with Celiac won’t have to suffer the way I did. I also plan on opening my own gluten free speciality store if it’s meant to be. I feel that this will be a great way to help my fellow Celiacs as Newfoundland still does not have a store of this kind and such a store will finally serve all the gluten free needs of the province. I want people to realize that living with this medical condition is not as bad as you may think and in a lot of ways, can be a lot better than you would originally expect.

    3. And this is another one I recently completed called ‘If I Had One Wish’

      When I was younger, it was common for me to wish for things such as wishing to have unlimited money and since I’m a big video game player, to wish for all the video games ever developed. As time when on and as I began to grow and develop spiritually, the hypothetical wishes started to become less materialistic. If had 1 wish now that could come true, it would be to no longer have Celiac Disease. However, I would only wish for this if it were under certain circumstances.

      The first of these circumstances would be that I would have to remember all of my Celiac journey and that I would have to know that I use to have Celiac. This is so because I learned so much valuable information on my journey. Some of the things I have learned are that I have learned how to eat healthier and how important it is to eat healthy. If I was never diagnosed with Celiac, I know for a fact that I wouldn’t be eating as healthy as I am now nor would I be taking my health as seriously. Through having Celiac, it has also helped me to become spiritually stronger and to have deeper faith. This is so because in order to grow and develop spiritually, I am the type of person who needs great discipline, focus, commitment and I have to put in a lot of effort to grow and develop in my faith- to obtain and then the process of retaining holiness doesn’t come easy and naturally to me like it does to some people. The exact same principles are vital for the Celiac journey: you will not make it and have a long healthy life if you don’t have great discipline and commitment to the gluten free diet nor would you be able to get through the days that are really mentally, physically and emotionally difficult when the various Celiac health complications kick in. My gradual growth and development in spiritually has allowed me to better handle the Celiac pains and has allowed to always get through when times get tough.

      The second of these circumstances would be that I will still have to remember the idea that I someday want to try to open a gluten free speciality store. This is so because I feel that it would be a great way to fulfill all the gluten free needs for Celiacs and people with gluten intolerance within the province. Since Newfoundland does not have a store of this kind at the moment, all the needs of the gluten free community are having difficulty being met. People who have to eat gluten free have to shop at multiple different stores in order to find all the products they want. This is often a very frustrating and time consuming activity for people who need to eat gluten free and for their families. A lot of gluten free products are also quite expensive and some people have difficulty affording all the products that they want. What I intend on doing with my store is that I am going to have all my gluten free products in the one location making gluten free shopping easy, time saving and convenient for customers and to have my products at affordable prices. I feel that this could be part of my vocation and that it would be a great way to help members of my community who really need the assistance.

      The third of these circumstances would be that I would have to remember all the important and vital ways of avoiding gluten. This is so because even when people are diagnosed with Celiac disease, a lot of times they are still accidentally consuming gluten. Common ways Celiacs accidentally consume gluten are through cross contamination, misreading labels and misleading labels. Cross contamination is when a food may technically be considered gluten free but through certain actions, prevents the food from being safe for a Celiac to eat. Some examples of this is putting gluten free bread in a toaster that has had gluten filled bread put into it. Due to the gluten filled crumbs that could still be in the toaster, this will make the “gluten free” toast unsafe for a Celiac to eat. Another example of cross contamination is using a cutting board that has had gluten filled foods on it. If there is any crumbs or liquid on it that is from gluten filled foods and if the cutting board has not been cleaned properly, then it would be unsafe to prepare “gluten free” food on it. Misreading labels is when a Celiac looks at the ingredient list on a products packaging and thinks the product is safe if wheat, barley, rye or oats is not present on the ingredients list (all these items contain gluten.) However, the product may not be safe to eat because if gluten free is not labelled on a product, there is always a reason why companies don’t put it on there. This could be because the product is made in a factory that also makes gluten filled products and hence, cross contamination could have occurred. There could also be very small trance amounts of wheat, barley, rye and/or oats in the product and the company legally doesn’t have to put it on the ingredients list and to only buy products that are individually wrapped and to not mix them with other products. An example of this will be the variety bags of candy that contain multiple different types of candy. This would be unsafe for a Celiac to eat because since there could also be gluten filled candy mixed with the “gluten free” candy, particles of gluten could gather on the “gluten free”‘candy and thus, not making them safe for a Celiac to eat. Misleading labels is when a company marks a product gluten free but there still may be small amounts of gluten in a product. A company can legally mark a product gluten free if it contains less than 20 ppm’s (parts per million) but can still have between 1 and 19 ppm’s of gluten in them. This is really unfortunate because a Celiac can consume a product that appears to be gluten free but may still feel the “glutened” effects after eating a product, which will result in a Celiac feeling the following symptoms but not limited to nausea, vomiting, brain fog, full body fatigue, cramps, diarrhea and joint pain. This is only a lesson I learned recently when I got “glutened” on a product that was marked gluten free. I now know to either always do online research or to call the manufacturing company for whenever I have doubt about a certain product- even for the ones that are marked “gluten free”. I feel it would be really important to remember all these things if I could wish for my Celiac to disappear because I do not want any fellow Celiacs to suffer the way I did when I was new to the gluten free diet and I feel it is a part of a veteran Celiac’s responsibly to help people not make the same mistakes I did when I was a new Celiac.

      In conclusion, I am more glad that I have Celiac than if I didn’t have it mainly because I learned a lot about how to be healthier and my idea of opening a gluten free speciality store won’t be possible if I didn’t have Celiac. However, due to the health issues that are associated with Celiac, it prevents me from doing certain things I would like to do such as care free and stress free travel and to take part in activities that I regularly use to do such as eating out and going to movies without a hitch. I have to avoid these activities for the most part because if I got “glutened” during them, I would miss time at college and that’s something I can’t risk doing. The only time I take a chance with these activities is either on semester breaks or summer breaks. The same principles will also unfortunately apply when I start regularly working. The presence of gluten is always in the back of my mind when I take part in these activities and I really wish I could do these activities without having to worry about being “glutened” like I did before I had Celiac. If I no longer had Celiac, that could also mean I could help Celiac’s even more because I would never have a day being sick with the medical condition ever again and therefore, I wouldn’t be home sick as much and I could do even more contributing to the gluten free community than I am currently doing. But I am a person that believes everything happens for a reason and I try to embrace the Celiac challenges as often as I can and I try to use them to grow stronger mentally, physically, spiritually and emotionally, which helps me in my life in numerous ways. If I didn’t have Celiac, I believe I wouldn’t be the person that God wants me to be. Wishing to not have Celiac would definitely be my wish of choice but it’s a wish I know is meant to remain a dream.

    4. I was diagnosed with celiac disease when I was 14 years old (both my mother and grandfather have it), and I am now 20 years old. Living gluten-free for so long (and also dairy-free since I was 17, having discovered my dairy allergy), I realize that having food allergies has pushed me into my desired career path. I realized at a young age how important nutrition is and how being in touch with your body is the key to a happy and health life. Treat your body right, and your life will improve so much more! I went from a chronically ill, inflamed 14 year old (including stunted growth) to a strong, healthy young women.
      I am now 20 years old, a sophomore in college, and I am a Dietetics major pursuing a career as a Registered Dietitian! Although a lot lies ahead (Bachelor of Science, 1,200 hours internship, Masters degree, and passing of RD exam), I am passionate and excited for the future. My dream is to work in diagnostics and help children and adults newly diagnosed with food allergies, specially with celiac disease, and change people’s lives as I was years ago. I used to view my diagnosis of celiac disease as a death sentence, but now I see it as a GIFT! If not, who know where I would be today. Everything happens for a reason, and I know I was put on this earth to do good and make a difference. 🙂

      1. How funny! I was diagnosed in 2002 and I am doing the same thing! In my second year of uni studying food and nutrition. I am not sure if I will continue down the dietetics path, now, because I discovered my love of baking and I want to open a gluten free cafe!

    5. I might do this if I knew for sure I had celiac. I did the gluten-free diet before being tested and don’t want to go through the gluten challenge, though I’d love to find out one way or the other. I’m still hoping they come up with a safer way to confirm the diagnosis.

      1. There are ways they can diagnose Celiac without you reintroducing the diet if it is unsafe to do so. I was just reading about it in “Understanding Celiac Disease for Patients & Caregivers”. If I recall correctly, it was via genetics testing and other blood-work.

        1. Yes they can test your genetic links but it doesn’t actually mean you have coeliac disease, it can mean you carry the genes. A friend of mine has 2 of the genes from both parents but doesn’t have coeliac disease as far as testing has shown.

          1. Too long to explain but the book I mentioned goes into detail about the various tests including biopsies, serology, etc. What I really like about it is that it is based on research and evidence, written by an MD, and explains things well. Included are the things a practitioner should be checking for visually, etc. Good for us to know too. It also states that if reintroducing gluten causes severe symptoms then they are excluded from the gluten challenge. And patients that refuse to do the gluten challenge should be managed similarly to a patient with celiac disease confirmed. If only all doctors got this! They should be reading this book!

        2. “You do not have the right to expect to receive other peoples work for free“I would suggest that this is a valid statement. You can certainly desire other peoples work for free but you don’t have the “right” to expect it.

      2. I’m in the same situation DD. We didn’t have health insurance when I was violently sick and with over $20,000 worth of medical bills from all of the tests the doc ran on us up to that point, including removing my gall bladder, we just couldn’t afford more stuff. The doc wanted to investigate an ulcer next, anyway. Still not celiac disease. So, hubby and I went gluten free on our own. We suspect he has dermatitis herpetiformis but a gastroenterologist told him he simply had dry skin and to put lotion on it. He didn’t even test him. Years later, when we did have insurance, there was no way I could do a gluten challenge. I get too violently ill and can’t get out of the shower. Today, I have hyperthyroidism, so gluten is a double whammy for me. A challenge is not an option.

    6. Glad to see thatI am not alone out there. Was diagnosed this year with Celiac. Only thing Dr. told me was to do Gluten Free diet and check back with me in 2 months. 2 months ended up being 4 months because of his schedule. No education, no information NOTHING! So hard to get everyone around you to understand you are sick but to them you are crazy. Praying I can find a new GI soon. Apparently no one where I am has the disease or the Dr.’s don’t feel it is that important. Very frustrating. So much good information here on your site! Thanks for sharing!

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    Who I am. And who I'm not.

    Who I am. And who I'm not.

    I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

    I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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