The social side of living with celiac disease

Dealing with celiac disease (CD) is multifaceted. One factor that makes celiac disease both challenging and yet possible to manage is that it is controlled by our food choices. Everyone has to eat, and food is often the center of the social events. Think of dinner with friends, dating, watching sports with friends, and especially at this time of year, holiday parties and family gatherings… Those with celiac disease need to control what they eat at all times regardless of where and when it is eaten. This seemingly innocuous task actually involves a complex set of components to manage and think about. We find there is little written about the social side of living with celiac disease. Importantly, while the social aspect impacts both our emotional health and our ability to stay safe, it is not talked about and little understood by those outside of the celiac family.

Celiac can be very isolating. We find that to protect our bodies from gluten contamination we sometimes withdraw from everyday events. We go into a proactive protective stance. Events we used to participate in with joy are now a cause for concern and stress. Here are some typical examples of what it feels like to manage the social side of CD.

Family and Friends

These are the people who love us. They want to help; they try to help. Even so, it can often end badly. How do we tell a friend who continues to make “GF” treats in her non-gluten free (GF) kitchen you cannot eat them due to cross contamination? Our friends mean well and often think that if they use GF ingredients, there is no problem. If only it were that simple. And yes we can train our closest friends on how to decontaminate their kitchens, and some will get it. But for the most part, a well-meaning casual acquaintance will not understand if you say no thank you to the treats they made for just for you. While attending parties out of respect for our host, we have resorted to stealthy placing a napkin wrapped, baked from scratch just for us gluten free cookie into our purse for later disposal. Or we thank the person hoping that they don’t see when we do not eat, but of course, they notice. It can be an awkward situation as it is almost impossible for those without the disease to understand the facility with which and the ramifications of “getting glutened.” We don’t want to hurt the feelings of those who love us or look unappreciative, or worse neurotic, to those who make a special effort for us. Protecting our bodies can seem like we are not protecting our relationships. We should not have to choose. But often we do. So we find that perhaps it is easier if we just say no…. No to the going to the party, no to eating someone else’s food, no to participating in the event. While isolating oneself is a natural response to a real threat, this is where the isolation can come in and perhaps the depression. We all have to choose what works for us and honestly finding those willing to go out of their way to eat at your specially chosen safe GF restaurant is an excellent screen for those that actually care about you. We find that with time and patience our loved ones learn what will work for family gatherings and will find ways to make everyone safe and happy. Family gatherings can go from being stressful to fun again with the understanding and cooperation of all.

The workplace

Why include the workplace as a social aspect of CD? The workplace can be filled with opportunities for gluten contamination. Sharing a kitchen, a bathroom, a lunch table, and workspace needs to be carefully considered and managed. Most people we work with have heard of CD now that it is has become mainstream, but we find few who understand contamination exposure. Then there are the meetings with snacks and doughnuts, birthday parties with cake, and of course non-optional company events we have to attend. Here too are the well-meaning people who make sure there is something gluten free(GF) at the gatherings. It is thoughtful but we all have our own tolerance for cross contamination and who knows how that food was prepared.

We find the best way to protect ourselves is to be open with the team we interact with daily and bring our own food or just refrain from eating until we are at home. Even a meeting snack can be controlled if there is fruit or GF snack bars in your desk for emergencies. Most importantly, feel that you can say no to events to protect your health, everyone deserves that freedom.

Dating and beyond

Starting a new relationship with CD can challenge. When do you tell the new guy (or girl) about your condition? Will it put them off if you tell them too soon? A lot of dating life is also centered around food and eating. The first date is all too often a dinner, lunch or coffee date. When and how much to tell is all part of getting to know a new dating partner. When that special moment comes, and your new partner is moving in for the kiss! It can kill the moment to have to utter, “um, sorry, but can you brush your teeth first? “ And beyond … We have been lucky enough to find that special person who loves us, and our CD is no big deal. The relationship moves to getting married and perhaps starting a family. That discussion is also very personal and can only be determined by the people involved. But there are considerations regarding children that we may want to discuss openly. There are the genetics component and the issue of potential infertility that accompanies CD. It should not deter you from having a family, but it is good to talk about it. Be open to sharing all aspects of CD with your new life partner.

Living a full life

While it may sound overwhelming and it seems impossible, we know many people leading a beautiful, happy, healthy, productive and complete lives with celiac disease. Indeed we are among them. We found the key is to be proactive, stick up for one’s self, learn and always plan ahead. Knowing the key to our good health is a gluten free diet is empowering because we are in control. There are no drugs with side effects needed. If we stay completely gluten free our health rebounds and we feel terrific. It can take time to negotiate the social landmines we face but we can do it. And it feels great!

 


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Comments ()

  1. delores nash says:

    i was so surprised how some of my family members make light of the cross contamination problem.Thank you for easing my mind about something that has been bothering me,i’m 60 days gluten free and its a hard process but it has given me my life back.

    1. Gloria Kumle says:

      What if your Husband wants home made Biscuts and Gravy or Fried Chicken ect ect and you have to make them ?

      1. Amy says:

        I make it gf. I make gf biscuits and cornstarch thickened gravy. I use rice flour as a flour coating. If it something that you have to live with he will understand the changes. My husband has been very supportive because he understands that this isn’t simply a diet it has to be a way of life if he wants me around for a very long time.

      2. Vickie Pietz says:

        I make them for my son… jut keep a lot of things separate.. plus gluten food is eaten off paper plates and use plastic spoons and forks… lol

        1. dani says:

          I second this and swear by it…I even make ppl wash dishes seperate with papertowls lol

    2. Diane Smith-Brown says:

      Having to explain gluten-free to family members can be discouraging. Each will have their own reaction in addition to us having our times when we feel like its just too much work to explain how and why.
      It’s a process and there will be good and bad times, family members that try hard and others who won’t. I’ve asked family members to save food labels for me and give suggestions as to what things are gf. I wasn’t interested in cooking before gf but I do make more things now. Admittedly, I do go without a lot but I’ve learned that food is not the most important thing and that I’m probably at least 100 lbs lighter b/c I can’t eat everything at a pot luck! I’ve been gf for almost a dozen years. It has its ups and downs. I enjoy eating things from scratch the most and have a few snappy remarks for some such as ” eating gluten for me is like having just a little rat poison”! I’ve had good friends with good intentions say “how about just half a donut!! lol!

  2. Teresa Finnern says:

    Delores, that is a painful experience. Hopefully with continued education they will begin to be appreciative of the situation you face. My son was 16 when he was diagnosed and family experiences unfortunately escalated. He is 26 and healthy and that is the important thing for me!!

  3. Bruce Cohen says:

    I’ve had family and friends gluten me on purpose because they decided I was faking it or the problem was ‘all in my head’.

    Never mind that I got crazy sick afterwards and told them about it. They think it’s funny and I’m crazy.

    I don’t go to events like that without eating first anymore because of this.

    I bring my own food and eat in the car until I am stuffed. Problem solved.

    Or better yet, call and say you’re going to be a few hours late and for everyone to start without you. Then show up only an hour late, and make sure to have eaten.

    1. Andrea says:

      You are not alone in this, friend.

      My family did the same thing.

    2. Deb Bruno says:

      I have had Celiac for 3 years. The hardest part of it all is not getting invited places and people saying “I made you something GF. What do you mean you can’t eat it”. I am so sick of trying to explain to people about contamination and if your kitchen is not completely GF you should not do any cooking for anyone. No one seems to pay attention. I take it now and throw it in the barrel as soon as they walk away.

  4. estelle says:

    I have been gluten free for 25 years. do not become discouraged with your life. you will have to accept the fact that people do not respect your situation. You will have to be your own best advocate. and you will have to accept the fact that it will change your life forever. I always tell people that the person I was as lived thru food, died and I was reborn as someone else. embrace your new life gluten free along with al the changes and when someone invites you to dinner and then has nothing for you to eat, even though they know about your situation and just decided it wouldn’t hurt you, just leave. staying and watching everyone else eat is just not worth staying..and yes, I had this happen multiple time with relatives! I wish you all good luck and good health!

    1. GFT staff says:

      Estelle, it was kind of you to write your comment. Your wise words and perspective are inspiring and will help many people just beginning their life with celiac disease. Thank you.

  5. CD says:

    When asked while out with friends; what happens when you eat gluten. My husband quickly says you don’t want to know. Then we just smile. Have had celiac for 36 years. I have accidently had gluten and within 30 minutes I get very ill.

  6. Mike says:

    “I don’t go to events like that without eating first anymore because of this.”

    DITTO x 10000

  7. Dorothy says:

    Thank you for this article, and to the people who posted comments. The eating before/taking my food part I’ve got down-pat. It’s routine, and I’ve just developed a suit of armor against the questions/comments, etc.

    I struggle the most with the falling-into-depression piece. I just miss all the foods I used to eat, and the things I used to do. (I miss…CONVENIENCE!)

    But I luckily have a boyfriend who is ok with the “go brush your teeth” scenario, and I work from home so don’t have the workplace CC concerns.

    Challenge: Does anyone have tips for finding a gluten-free housemate when you are almost 50? Everyone I meet with celiac is either married or a kid! THANKS for any advice. No luck with Craig’s list, celiac support groups…

    1. Deb Bruno says:

      Dorothy…you can eat, use all family recipes, that you used before. If something that you like calls for flour-use a GF blend that you like. Make sure your canned tomatoes, chicken broth and spices are gluten free. If you are not on Pinterest I would suggest joining. I would be happy to invite you-just let me know. I find cooking to be the same. I use all my old recipes. If you are baking something, 2 cups exchange of flour is usually going to come out the same with GF flour. I use Erika’s Blend which you can find online. Bread is tricky but I don’t eat alot of it so for me it’s not a problem.

  8. Juanita says:

    I have CD for 2 years now. It is really hard at work. I work night shift they often call out for food. I have only been able to “eat out” with my co-workers once and still ended up with a salad. I recently celebrated a milestone birthday. I went out to dinner with a friend and took my own dinner roll with me. I miss some of the foods I used to eat. But I don’t miss the pain and other symptoms I had.

  9. Lois Hughes says:

    Comforting information.It’s nice to know others feel the way I do about social gatherings. My family and closest friends understand but I miss out on parties,dinners at resturants and friends homes.Forget weddings.That’s next to impossible for me.

  10. Crystal says:

    Thank you for this article. It’s easy to start believing you must have misunderstood how careful you have to be to guard against cross-contamination. Over the years, the more people look at you like you clearly made it all up just to be difficult, the more you wonder if you might be just crazy!
    Dating is absolutely the worst! I recently walked out on a date when a guy told me there was no reason I couldn’t eat the salad next to his burger. He insisted it was all in my head. I tried to explain Celiac Disease to him, and he told me I’m wrong and he knows what he’s talking about. I’m a zoology student who loves biology and has known about CD for 7 years, and he knew nothing about science, medicine or CD. This is an extreme case, but the feeling has been the same from almost every guy I’ve tried to date since going GF. It’s hard to want to give anyone a shot when you always get “the look” the first time it really becomes inconvenient for them, and each time anything is mentioned thereafter.

  11. Elena Torsiello says:

    I have been on a gluten free, dairy free, caffeine and garlic free diet now for about 17 years. When I got diagnosed with Celiac Disease 17 years ago, there were not many gluten free and dairy free foods on the market. I was a cake queen and ate 3 Tasty cakes a day. I realized that if I was to become healthy that I needed to take control of my diet and that my gluten-free diet did not have to be looked at in a negative way. I mourned all of the foods I used to eat and said to myself that all of the other food was poison to my body and that I will stay away from all of those foods forever. My husband is extremely supportive and cooks everything gluten and dairy free for me. As far as my friends are concerned they always ask me where I can eat. I always carry my food bag with me with dinner if I have to go to a meeting or if I am going out to dinner I carry my olive oil and Italian seasonings for a salad. The biggest challenge is to explain to the waiter that I want all of my food cooked plain and it still comes back with garlic because the cooks in the kitchen are not listening. I have had numerous times where my food had to be taken back and everyone is eating their dessert and I am just getting my food back. When this happens I just call the manager and usually I get the meal free. Please do not let celiac disease and the gluten free diet stop you from living your life. You have this illness but you are not the illness. You need to go out and live your life. You just have to talk to the chefs, managers and explain to them how your food needs to be prepared. When you are going to a wedding or a banquet you need to call in advance for your special meal. I look at having celiac disease as a positive thing. I get to eat things that I never would have eaten before and it is a very healthy diet. I even wrote a children’s book to help children and parents understand what celiac disease is and how to cope with the gluten free diet. My book is Willie Villie Meets Casey Kramps in Sprueville: A Book About Celiac Disease. You see you can turn your tragedy in life into a positive situation that can help others who are feeling isolated and depressed over their new gluten free lifestyle. Stay positive and know that you have total control over what you eat and how you feel. You just have to explain to your family and friends that getting sick is not worth it to you and that you will be bringing your own food due to cross contamination issues. I bring my whole Thanksgiving dinner to my sister’s house and she is fine with that. You must take the lemons and change them into lemonade. Now that being gluten free is a Hollywood fad and more and more foods are coming out on the market, I believe people are becoming more aware of celiac disease and the gluten free diet and will have more knowledge of cross contamination issues.
    Stay positive and think about all of the things that you can eat and not the things you can’t eat.

    1. Michele says:

      Thanks to everyone for the wonderful comments. As someone who was diagnosed within the last two years, I still have a lot to learn and have some down days about being celiac.
      Elena, do you happen to have a blog that I could follow?
      Thank you!

    2. Mark says:

      Lovely response to this article!

    3. Eagle Bird says:

      Thanks for your comments, I have had CD for my whole life, though only found out 6 months ago at 34 years old, I almost died as a small child due to CD but in the 80’s it was put down to lactose intolerance (that is a secondary issue).

      So now I am Gluten Free & Dairy Free and also have a rice & egg allergy! Try to find marketed GF food that is rice, dairy and egg free – very hard!

      I must have know that I had CD as I live on a organic 100ac farm where we produce all our own fruit, vegies and meat!

      I thank everyone again for your comments and suggestions about how to deal with social situations and CD – lucky for me I am also Asperger so don’t mind telling people what I think and don’t seem to notice the negative reactions!!

      I like to tell people that I am a Higher Functioning Autistic Celiac who is lactose intolerant and allergic to Rice and eggs, nice to meet you!

  12. Hannah says:

    Great article. One missed section is School. For kids growing up with CD, this is a really tough area. From classroom celebrations to even things like dances and family fun night, it’s just so tiring. We use these times, and times when we go to other people’s events and dinners, to educate as best we can. Sure, some scoff and roll their eyes but when you have a little girl with fear in her eyes over eating a brownie… a brownie?!! that kid should be lunging for it but she’s afraid?!… that speaks loudly enough. We are persistent and some people get it. Others are still at the “as long as the ingredients are GF I’m okay” stage but we just keep on keeping on. Keep Calm and GF On.

    I also find it’s better to not make a big deal out of it. It’s important, but don’t make it the only thing you are about. We are so much more than CD.

    1. GFT staff says:

      Hello Hannah:
      We at GFT appreciate your comments and suggestions. We are now putting together an article on celiac disease from a mother’s perspective. Would you be open to the opportunity of adding a quote or information about your experiences as we tackle this important aspect of the celiac community? Thank you in advance. Should you choose to respond, please send your response in an emial to info@glutenfreetherapeutics.com.
      Happy New Year!

  13. Jane Singleton says:

    My daughter in law found out she had to go Gluten Free, and dairy Free, 1 year after she was married to my son, I am a baker, I look for GL free and sub Earth Balance butter replacement for dairy, I always make a special desert for her, and our meals are Gluten free when she comes over, my mashed potatoes are dairy free I sub a dairy free milk replacement and the dairy free butter replacement. The meals are not hard, The deserts kind of tricky, but it can be done,

  14. Kelsee Blin - What Is Silica says:

    Thank you very much. Great article

  15. Julia Sewill says:

    I have had celiac disease for eight years. I started not being invited to holiday gatherings. I had a friend put wheat flour in my dinner. I was so ill I had to go to the hospital. My ex boyfriend of three years would cook for me and became gluten free too. He lot a lot of weight too thin. I think he resented me. We had to carefully plan whenever we went anywhere overnight. Where I would eat. Cross contamination is the biggest problem. I hate this disease.

  16. Janelle S says:

    Daughter was recently diagnosed with CD. She is planning her wedding. We will be making her a special dinner at home and a special GF cake; of course she can’t eat what the caterer will prepare. Her fiance’ is amazing and is GF, too, and is very conscious of brushing his teeth and mouthwashing after a beer or snack or meal. We have two separate sets of cooking items, one for her when she visits, two sets of utencils/dinnerware, etc. It is expensive and neurotic to keep it ALL in mind when cooking a meal in a kitchen that is nonGF when she is not there. We have managed to not gluten her at this holiday visit, but at Thanksgiving, her brother was so kind as to get GF bakery from a bakery, which made her very sick. She knew it would but didn’t want to discourage him from contributing and trying to help her out. Man, hope there is a cure/pill SOON! 🙂

  17. Angie says:

    I have been diagnosed with celiac disease and I feel some of you are taking cross-contamination a bit too far. I had holiday meals at family members houses that are non-GF and have not suffered consequences. They are aware of my condition and I don’t eat anything which contains gluten (wheat, barley or rye) and everything was prepared in the same kitchen work space. I eat at work and prepare my GF bread in the same toaster as everyone else – no issues. Seriously, asking someone to brush their teeth before they kiss you! Really – way too far!

    1. Dr Mike says:

      The point if this article is to make people aware of the seriousness of some people’s CD. Truth is that everyone reacts to things differently, and while yes- you may be fine with cross contamination, my CD girlfriend is very much not. You dismissing how other people react is just as ignorant as some of the people mentioned in this article. Some people have reactions to as little as 20 parts per million of gluten.

      Tl;dr – not everyone’s the same, be understanding please

      1. Dr Mike says:

        Also, I brush my teeth to kiss my girlfriend. Gives her peace of mind.

        1. GFT staff says:

          Dr Mike you are a true gentleman. Understanding your girlfriends needs is wonderful. And as to your comment regarding reaction sensitivity, we support your comment. It is well known by the medical profession that there are different levels of sensitivity within the celiac population. We have not written about that yet due to the lack of documentation. We need to understand more about the levels of damage that accompanies the sensitivity levels to be able to write a science based blog. But your comment compelled us to mention it. You are correct that everyone is different but one thing that is not is that there is no expectable level of contamination for a celiac. All gluten exposure will cause damage the only variable is how people feel when exposed. thank you for adding to the blog post.

  18. Mark says:

    I’ve been dealing with this for 25 years- and while this article would have been true up to maybe 7 years ago, life has gotten progressively easier to where now it’s a comparative breeze. I work as an international tour director- and even overseas there are gluten free places! I know there are people more sensitive than me, but i’ve chose not to let cross-contamination be an issue, for the most part: forget eating fried foods, but otherwise…I’m in superb health, knock on wood. All these “issues”: welllll, I find this condition vastly less limiting than diabetes, mental illness, Krohn’s Disease, etc. I count my blessings this problem helps me stay skinny by avoiding all the sugary, fatty garbage so beloved in our culture. As to dating- anyone who wouldn’t be willing to deal with this in my life is not someone I would probably have much in common with either. I do wish people the best in dealing with this!

  19. Sharon Maag says:

    I have had celiac disease for 44 years now and have found out you must be in charge of your diet! I was so sick because I could not even drink water without being on the stool so steroids were the answer to my severe problem and I was gluten-free. We all react differently to food. Too me it is like food poisoning and it is horrible. Even though I am gf I do take medicine or I can not leave the house . I always carry my own well water with me wherever I go and I am not embarrassed by it because I react within 10 minutes of drinking even pop from a fountain.
    Stay in charge of your health! I really appreciate all the comments for we need each others support.

  20. brent says:

    Social aspects of being with coeliac diease is something rarely talked about. Being healthy and getting glutened is great, as a coeliac, holidays are very scary. Seeing people go here and there, causes jealousy that they don’t have to think about food and just enjoy themselves and yet some whinge about how food tastes. if they live with coeliac they would hate it as much as I do. Should they find a cure I would not whinge about food anymore as I have lived this lifestyle and would appreciate food even more.

    1. GFT staff says:

      Your insight is spot on Brent, sometimes people have to lose something to appreciate it’s value. Living with celiac disease does create a new relationship with food. After having illness from what we eat we can, on a GF diet begin to love what we eat and find joy in what we can eat not what we cannot. We are happy that we can control our disease through following a diet that is rich in natural foods instead of medication.
      Thank you for your comment.

  21. Pitch Perfect says:

    I organised a dinner out for family & friends last night. I called ahead and confirmed that all the curries were gluten free without adapting them. They told me that just to be sure, when everyone ordered to let them know to make them all Celiac, so that they don’t use the same utensils as other gluten containing foods. There was going to be absolutely NO CHANGE in the meals ingredients.

    Two childish men made a big deal of this, humiliated me, mocked me openly and then ordered their meal normal. This then meant that my meal ran the risk of being contaminated and switched/swapped with theirs. I explained it to them & that I would be sick for a week and didn’t want to end up on steroids & they continued to make fun of me. Couldn’t believe it! I was looking forward to this night out all week and I sat there and couldn’t eat anything. It humiliated me & I don’t feel like I can eat out again with people.

    What also hurts, is that no one stood up for me. Not my family who have watched me struggle with this aspect of the disease for the past 7yrs. My husband sat there, eating and laughing with these people……….Now we are arguing

  22. Donnajuato says:

    Thank you so much for this article. I was diagnosed with celiac 1 1/2 years ago and am feeling better physically but suffering emotional consequences of living with this disease. I was an avid traveler (I’m 60 years old) & am now hesitant to leave my hometown. I’m currently visiting my daughter out of state and it is a real struggle, living in constant fear of getting glutened. I’ve deglutened their kitchen so I can prepare some meals, have a supply of cooking utensils to use while I’m here, and rely heavily on certified GF frozen meals from Whole Foods. honestly, it is a pain, but I keep telling myself it will get easier — but sometimes I just don’t believe it.

  23. amf1 says:

    I have a 3-year old daughter who was diagnosed last year with Celiac disease. Right now, she is too young to really understand (or be bothered) by the social aspects of the disease (e.g. I have to bring separate food/cake to Birthday parties, carnivals, restaurants, friends’ homes). I worry a lot about what it will be like for her as she gets older, especially through grade school and high school. As much as I’d like to “protect” her and try to provide separate meals and keep her safe from cross-contamination (even if a friend or restaurant is well meaning), I know I can’t parent like she’s 3-yrs old forever.

    The stories I’ve read about people who disengage from social events, or who have friends who don’t get it, are heartbreaking.

    Has anyone been through a similar experience with their child growing up with Celiac? What was your experience like? And what advice could you give to both me and/or my daughter so we can best deal with this?

    Many thanks.

    1. Leeanna says:

      I have been gluten free for several months but have had digestive issues since I was a child. 4 others in my family are confirmed celiacs. I discovered a wonderful blog and recipe books by Nicole Hunn “Gluten Free on a Shoestring”. She has 5 cookbooks now as well as a blog and frequently sends e-mails. She has a child that is celiac and made it her mission to recreate any food gluten free. She talks about how to raise a child with celiac – the social aspect. Well worth reading!

  24. Ken says:

    What is a safe sleep remedy to take while trying to avoid gluten ? Doc says gluten has caused insomnia, anxiety and depression, also high blood pressure. Please advise

  25. ExD says:

    I am sitting here absolutely dreading tonight because we are attending a drinks party my husband simply HAS to go to, and I am expected too. I am wondering WHAT I should eat now so that I don’t have to eat any of the nibbles and sandwiches which will be available.
    Protein and fibre with fat to line the stomach according to Google, but not cheese for some reason. I’m going to scramble an egg on GF toast – I hope it works.
    I was sad to see PitchPerfect’s post about her experience at the party – I’d like to tell her to feel proud of herself for not letting it faze her, although it was a horrible way for those ignorant so-called friends to behave.

  26. Anthony Franco says:

    Hello! I am writing a college paper about celiac disease, but I could not locate the author or date of publishing for this article. Could you supply that information, so this article can be cited properly, please?

    Thank you!

    1. GFT Staff says:

      Hello Andy, good luck on your paper.
      this article was written by Leigh Reynolds and was published on 12/16/14.

  27. Laura says:

    I want to cry because I’m so tired of telling my boss that I can’t eat that donut. He has actually shoved it under my nose, and said hmmm do you want a bite? Very rude, and the truth is it’s making me angry inside. Any suggestions on how to handle this would be greatly appreciated. I can handle family, but this work place thing is very hard especially when people are so rude, and thing that my disease is funny.

    Please help! I’m desparate

    1. GFT Staff says:

      Laura,
      We are so sorry to hear that your co-workers are not taking your celiac disease seriously. What you described is not only rude it borders on bullying. Not cool. Sometimes people just don’t understand celiac disease. They think not eating gluten is a choice. You may have to educate your work colleges about the disease and how serious it is. Let them know it is an autoimmune disease for which the only treatment you have is avoiding gluten. Let them know gluten affects every part of your body and puts you at risk for some pretty scary diseases if not controlled.
      It is Ok for you to get mad, anyone would be with the comments you are getting. But remember, you are in control of your health. No one else is going to keep you safe if you don’t.
      You are a part of the celiac community and we all support you.

  28. Elexer says:

    Laura,
    If you can I suggest going to your HR department and reporting this if it continues. Particularly if he starts shoving gluten foods in your face- it’s a health concern. And if you can’t report it try to compare your Celiac Disease to a peanut allergy. For some reason people respect the term allergy a lot more than autoimmune disorder.

    As for my own experience with the social side of Celiac Disease, I had to stop being friends with a friend I had for four years(there were others reasons as well, but mostly) because she started to encourage me to eat gluten foods after I was diagnosed just because she had a shellfish allergy and still ate shellfish. Then would get angry with me for not sharing her destructive eating habits.

    On top of that, most of my family get-togethers are at restaurants and non of them are gluten free, not even the salads because they’re prepared ahead of time with the dressings and croutons. Plus, even being in a gluten-filled restaurant/house, because of the smell, makes me want to throw up. So no to family get-togethers.

    Someone should make a gluten free fast food chain. Pretty please. Lol. I miss being able to eat without cooking at home.

  29. Marie says:

    I have celiac disease and am pretty sure that I have always had it. I am 66 now and living in a country where gf products aren’t easy to buy. I can buy gluten free flour mix from time to time. And have had to learn to bake gluten free. I see that there is another person commenting on Nicole Hunn’s gluten on a shoe string. I use a lot of Nicole’s recipes and often have to adapt them as I am allergic to nuts, dairy and a host of other ingredients. I try and always have some gf baked goods in the freezer as a treat. It is getting easier from that perspective. But I am at the stage that I won’t eat out if I haven’t prepared the food myself. I am highly sensitive to the tiniest traces of gluten. I only recently found out that I needed to replace chopping boards, wooden spoons etc as the gluten remains in them. It isn’t easy to keep from getting glutened. I only wish I had known I was celiac from child hood.
    I would like to tell all my fellow celiacs to keep soldiering on. You will come across ignorant people all the time, but it is not they who get sick. So please ignore them. God bless you all.

  30. Professional_2022 says:

    Background: The only treatment for coeliac disease is lifelong adherence to a rigorous gluten-free diet. The present study aimed to evaluate the influence of coeliac disease on the social aspects of daily life of individuals in the U.S.A. Methods: The present study used a self-administered survey including the standard Quality of Life questionnaire (12-item short-form) with validated disease-specific questions. sas statistical software 2010 (SAS Institute, Cary, NC, U.S.A.) was used to calculate the mean (SD).

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