celiac isolation

Celiac Isolation… Is It Inevitable?

Is celiac isolation inevitable? It is an issue that is not often discussed. There are almost no published studies that look at the role that celiac disease (CD) has in contributing to social isolation. We think it is time to talk about one of the most common but often silent consequences of celiac disease.

There are huge differences in how people experience celiac disease. At one end are those who do not have outward reactions to gluten and take a relaxed approach to diet management. At the other is the highly sensitive group who have very physical reactions to the slightest contact with gluten and tightly control their diet. No matter where you fall on the spectrum you have probably struggled with the social side of celiac disease.

Let’s face it any disease or condition that requires some form of diet restriction is socially challenging. Think of people with diabetes, and other food allergies, like peanut allergies. Those diets also require constant vigilance at each meal. But except for peanut exposure,  thankfully, most other diet lapses are not life threatening. Even a diabetic has some leeway in food intake. Not so with celiacs. Because gluten is so prevalent, it is very difficult to control cross contamination, and exposure can add up to damage to the intestinal wall that has serious consequences.

As the need to strictly control our food intake increases, it can feel easier and safer not to attend social events. Invitations are turned down or may stop altogether.  This is how isolation begins.  Isolation can lead to depression another know side effect of CD.

Most social gatherings include food. Spending time with friends and family usually means sharing food, office events include food, dating includes food, and even job interviews are sometimes held over lunch. It is natural for people to meet over a meal or a snack. What isn’t natural is having diet restrictions that only apply to you. It can be a heavy burden for CD patients.

What does that mean for a celiac patient who needs to tightly control their food intake? Many limit social occasions to ones they can control. When meeting friends and family, they bring the food. With office parties, they bring their own food, with business meetings they pick a safe restaurant. It is hard work. We don’t want to inconvenience others, and we don’t want to stand out. And we don’t want to have the “I have celiac disease” conversation at every event just to fit in.

Isolation is not inevitable, but the loss of spontaneity is. The key to safety is consistent planning. Just like a boy scout, always be prepared.  Evaluate every social situation beforehand. Will you be able to eat safely? How will you control your exposure? How important is it for me attend?  Only you know what situations will work for you. We are suggesting that thinking about it beforehand can eliminate problems later.

We know many people with CD who travel the world and attend social events as part of their jobs. They have learned how to protect themselves successfully and so can you, being prepared is the key.

Don’t let celiac disease keep you from living your best life. Don’t let yourself become isolated from those you love and things you love to do. We urge you to find a way to stay safe that works you.

If you have found a way to manage your gluten-free life successfully help others with ideas by leaving a comment.

related posts you may find helpful:

Depression is linked to celiac disease

Gluten Exposure and Your Body: Here’s What Happens

Celiac Disease and Mood Disorders



Comments ()

  1. T. Melvin says:

    People who live in rural areas are more likely to be isolated Celiac’s. 99% of restaurants and social events offer NO gluten free options. A muffin at best, and likely cross contaminated. Most don’t know what celiac is. This year, I’m skipping both Christmas parties because they’re ‘gluten-fests’. I’m tired of explaining it, and watching others eat. I could bring my own food, but I’m still not part of the group. I’m an oddity in their midst. No thanks, I’ll stay at home. Seeing tables of festive food I can’t eat is like going to a funeral. How many times can you go to functions and just sit there smiling, empty handed? It gets to you. Avoidance.

    1. Dee says:

      T. Melvin,
      I feel your pain. I cried when I read this article and again when I read your analogy of CD and funerals.

      I still go to food functions, but sometimes the emotional toll it takes is strong and I often leave feeling exhausted, trying hard to act like all is fine when it is not.

      I am tired of people asking or joking about the bringing of my own food. I just want to enjoy my time with friends, but I don’t. It is too painful. No one seems to understand that.

      I am grateful I can eat. I am grateful I have friends, but gluten is poison and when someone passes a plate of bread over my food or when they hand me the plate and I have to touch it, I have to leave the table and go wash my hands forcing me to go wash my hands. Because I don’t know if their soap is GF, I also bring my own soap.

      I have been gf for over 4 years with a couple of poisonings. I still go, but I have become paranoid about eating out. It is just easier to stay home and keep that anxiety down.

      When I am stronger, I eat a huge meal before leaving and I bring some cut up veggies and dip I can eat in my car. But for the most part, I avoid eating out.

      I have started CD groups but no one ever came. I am in a big city, but there seems to be no interest.

      I am grateful I can eat, but sometimes I get so depressed I just want to give up.

      TM, my heart aches for you. Hang in there, I hope in time, more folks will be dx’d and more people will come around and take CD more seriously.

      Be as well as you can

  2. maggie feather says:

    I have experienced everything from ignorance on the part of food servers and cooks to once being asked to leave a restaurant because I asked them to replace a salad into which they had put wheat derived pieces of bread. Social isolation is real. Gluten poisoning is real. The airlines are the worst!!!! Even in first class they do not provide GF food when requested. Fear of Gluten poisoning is a constant when traveling. – Solutions: carry adequate food with me including bread that I take into restaurants. Keep my home 100% GF. Once you do it, it works really well. Doing this now for more than 15 years!!! Social interactions definately suffer. Isolation is real.

    1. Kevin says:

      I sympathise with you, I was diagnosed CD 3 months ago it’s been a nightmare you have summed it up, I work away from home and it’s terrible trying to get hold of GF Food especially when you work on a plant as I’m an engineer, I’m also away from home alot staying in hotels etc and again finding food and feeling like a social outcast drives you mad, cross contamination is a real problem, and dealing with idiots telling you a bit won’t hurt you makes you feel angry most people think CD is in the mind, the headaches are constantly there, feeling fatigued etc, I wish we had a CD group where I lived I would certainly attend, take care and stay healthy

  3. Kate says:

    I was diagnosed with CD when I was 15. Although it has become easier to deal with, esp. with the increase of GF products and options in supermarkets and restaurants, I still really struggle with cross contamination. A fews weeks ago I was hospitalised. I had eaten a “GF” cake at lunch and 10 hours later I started vomiting. Essentially that cake was either not GF or contaminated and it had sat in my gut causing massive inflammation and damage and meant that my dinner was sat in my stomach totally undigested until I started vomiting. There was also blood in my vomit. Does anybody else get reactions like this? I don’t even get to the part where I could suffer from bowel movement issues because I will eventually sick everything back up, well over 12 hours after I ate it.

    1. Patty Harrigan says:

      I ended up in the ER after a “gluten free meal “ in a restaurant run by a celiac. I vomited non stop and shivered for 3 hrs. I thought I might die. Nursing staff tried to give me meds to stop the vomiting. They had no idea if the meds were gluten free. Are you kidding me? I have made the decision that I have to be 100% in charge of my food from source to mouth. I feel like I’ve gone from jail to solitary but I will never allow this to happen to me again…never.

  4. CeliacAZ says:

    This whole thread resonates with me. I was diagnosed 10 years ago & believe it or npt, I’m still learning. It’s a never ending vigil to avoid gluten & I have truly become a recluse… cross contamination is so widespread, it’s just dangerous for a celiac. Even after all this time I still have family members who say “it was only a small amount, shouldn’t that make it less severe?” Ummm no, it just doesn’t work like that… so who wants to explain themselves all the time? sorry to sound so plaintive, but I’m being honest. It’s really hard.

  5. Rachel says:

    I am truly thankful to know that I’m not the only celiac that struggles with this. The comments in this thread have really hit me hard. One of the hardest parts for me about being diagnosed (besides the actual symptoms of getting glutened and the constant problem of cross-contamination) is the social aspect of it. I feel like it’s an issue that needs a lot more addressing (especially for the sake of kids and teens who have celiac) as it really can be a crushing thing to deal with.

    As I can very much attest to becoming more isolated due to celiac, I would venture to say that it has turned me even further from social events than probably anything else in my life has, including my social anxiety (which has been heightened because of it). Whenever I make the attempt to attend such functions, I can almost always count on the pity looks, needless apologies, and sentiments such as “oh, that must be awful. I could never do that” when I explain why I can’t eat the food. But that doesn’t make me feel included or accepted, that just makes me feel more alone. And I know that people who don’t have it wouldn’t get it, but that’s just the point. It would be so much easier if I could just go to parties and things and, even if there were foods containing gluten there, not have it be a social expectation for me to indulge in the food, or have it be as if I owe an explanation for not eating it. Ideally, I would like to be able to just avoid those conversations altogether.

    Not being able to do something that is so natural to the majority of people, that is supposed to be such a normal part of life, it’s really such a difficult struggle in and of itself. It makes a person truly feel alienated, self-conscious, different, and utterly alone. Having certain foods be life-threatening to me when they are merely delicious snacks to others is a huge burden that goes unnoticed and should be acknowledged because of how much a negative impact it can have overtime. Even in comparison to regular food allergies, those feelings that accompany having celiac in social situations aren’t the same.

    A simple thing that would help monumentally is if it were much more common knowledge of how dangerous celiac is, and even just what it is, a serious medical condition and not simply a gluten free diet that can be cheated on whenever. If I didn’t have to offer an explanation of my disease all the time, I wouldn’t have to be reminded of it, I wouldn’t have to think about me being different from everyone else. If I could just say that I’m celiac and not be questioned because of an understanding of the danger, things would be so much better.

    I just want to let others know that it’s okay to feel burdened by it for any reason, especially socially. And you should not think yourself weak for taking certain actions or leaving certain situations to protect your emotional and/or mental stability. Feeling like an outcast and all alone for not being able to do certain things a lot of people can, that’s something that takes a huge toll on us social creatures. Don’t punish yourself for feeling those things.

  6. linda suibielski says:


  7. soley dantin says:

    Everyone talks about food in here. For me, the least issue of CD is food. I am on a GF diet and still I feel depressed, isolated, and with no guide of what else should I do to overcome this condition. I am tired to fight. I wish we all could have a daily meeting to talk with people who really understand. I am tired to live like this.

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