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. On 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.
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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.
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
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.
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
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.
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.
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.
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.
I JUST WANTED TO SAY THAT NOW I DONT FEEL SO ALONE.I CAN IDENTIFY WITH ALMOST EVERYONE ON THIS BLOG.I FEEL SO ALONE WHEN I GO ANY WHERE THERE IS FOOD THAT I CAN NOT EAT. I HAVE LEARNED MY LESSON ON JUST EATING SOMETHING TO FIT IN,THEN I GET SO SICK.IT IS NOT WORTH IT.
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.
Soley, are you Facebook? You’re free to add me there. https://www.facebook.com/o11o11o I was recently diagnosed. ‘officially’ anyway..i knew I had it for quite a long time now, but was pretending to deny it.
GF diet treats CD only, not its complications. So at the very best, it reverses some symptoms, and helps prevent further damage from being done.
And a GF diet doesn’t reverse a lot of the damage already done..which could be a many different things that contribute to the hell that depression can be.
I’ve got a lot of different ways to treat depression, but like CD there is no real cure. Experimenting with many different methods and finding what helps keep the severity and duration of depressed moods to a minimum is the best way to go.
If you’re not on facebook, email me at Sirialodin@gmail.com and I can elaborate more.
Keep in mind that GF diet is the treatment of CD, not a cure. And damage already done may or may not be reversible with GF diet alone. Depression is hell. I know. There are things you can do to abate its severity and duration, but it’ll never fully go away forever until you find what works best for you. I tried to comment my contact info to you so I could elaborate, but it might be subject to admin approval or was denied for some reason.
Oh my goodness, I am sitting here tearing up reading this and feel a whole lot less alone with my GF/Celiac struggles.
Backstory: I was diagnosed with a “gluten intolerance” in 2005 at the age of 18. Not much was known about celiac and gluten free diets back then, and when I say there was nothing for me to eat, there was truly nothing for me to eat. But the doctors told me I could “treat myself” here and there, maybe once a month.
And then I went away to college. So as you might imagine, that all got blown out of the water between beer, pizza, etc. I had done irreparable damage to my intestines and my “gluten allergy” was soon diagnosed as full blown Celiac in 2011 after a hospital visit and testing.
I have since been vigilant about everything I put in my body but got violently ill a month ago after going to a party and being told the cheese was alright to eat. It was the only thing I could eat. And I paid for it. CHEESE!!! I was sick for days and am currently in the process of further testing. My blood work came back with Celiac levels through the roof. They’ve since found I also have a hernia in my stomach.
I guess the whole point in this is, I fell into a deep depression over all of this. I am reading that Celiac can affect depression and anxiety, which gives me a bit of hope that my diet can help. But I am really alarmed that my Celiac has gotten worse… to the point where my doctor would like me to watch the soaps and lotions and make-up I use. Now I feel like I have to live in a bubble. And it has become increasingly difficult to find food to eat during social situations.
My question is… has anyone had any experience with their Celiac getting worse after being so vigilant about their diet? Also, has anyone else experienced a deep depression when their levels are so high? How have other people dealt with social situations? My friends are now getting upset with me because I am bowing out of situations that could trigger me (including emotionally).
Thanks in advance for any insight and support 🙂
Shannon,
Don’t worry, everything you are experiencing is normal for the majority of celiac patients. The disease can act differently in people, but there are some very basic commonalities that occur.
First of all, you cannot “treat” yourself by eating gluten. Your gut needs time to heal and each time you cheat you set the healing process back too. The only way to heal your digestive system is to completely cut out gluten in any source.
If you are having flare-ups that are worse than before it means your gut is healing. Once the villi in your intestinal wall are repaired, they will respond quite vigorously to gluten. Your immune system goes into high alert, and it feels like you are going backwards. But the opposite is true, your body is responding to what it considers a threat. Avoid gluten at all costs.
It is hard in a social setting. We usually go prepared with our own food and drink or just don’t eat in social situations. It is far more common these days for groups of people to have varied food requirements. It is nothing to be ashamed of.
Your depression will get better as you get better, there is a chemical link between the gut and the brain so as you eliminate gluten the trigger for depression will subside.
No need to feel deprived there is a ton of stuff you can eat on a GF diet. We have been on one for years, and don’t miss anything.
We are all part of a celiac community, and we all support one another.
We have over a hundred blogs on our website so scroll through and see what topics are of interest. We provide them free of charge as our way of serving our celiac community.
My 5 yr old has just been diagnosed. He has went to school 2 days. Friday I saw a little girl eating a bagel and I panicked, quietly but I was so afraid. I am literally driving myself crazy and pyscho trying to keep the other kids happy and my husband and not poison my baby. Yesterday I made him a peanut butter and jelly sandwich and I used the wrong jar of peanut butter. Today has been a nightmare. He won’t be going to school tomorrow. My husband doesn’t get it, the other kids don’t get it. My other worry is if I can’t get it right, how in the world do I trust the school to get it right. I have a feeling he will end up being home schooled just to keep him safe and save my sanity. My marriage is suffering. My relationship with my other kids is suffering. I told my husband I just want to put our son in a bubble. Not to mention the stinking labels on stuff are so hard to read! I always have to have one of my older kids go shopping and read and google everything! It takes forever. I feel like I am never going to get this.
Bernadette and anyone else with CD induced depression, I’m realizing after a yr researching I’m Celiac I’ve and have had the classic symptoms for yrs, now 46 with atrophied gut too, I went from an aircraft mechanic to a dishwasher at a ruby Tuesday’s in a small town living with parents. Yes family friends socially dismissive and eye rolling…that’s ok, they’re lost in the dark. Lack of understanding breeds fear. Depression anxiety Rashes headaches all of it very bad, I could feel my small intestine swollen with my hand and pass a lot of blood too, urinary tract infections, severe temporal headaches… you have to decipher the food labels to start, GOOGLE EVERYTHING.. RESEARCH RESEARCH….it seems daunting because it is,..until you understand the devious food labels. For me even gluten free labels isn’t reliable at all. I get CD reactions to GMO foods even GF foods. Lectins are also a problem..HANG IN THERE! I get serious bouts of anxiety and depression. It’s akin to hay fever, a fever induced by the pollen, same with Celiac Hang in there everyone, I wouldn’t change anything now ” I know”..PRICELESS. John
Good lord, what is the point? This is why I don’t bother with a GF diet. Humans are meant to be social. This isn’t a life. I function with carafate and histamines. I’d rather die early than spend my life locked in my house, or being afraid of everything. Let it kill me. That’s no way to live anyway. I’m not here to simply keep drawing breath as long as possible, I’m here to have a damn life.
It’s been nearly two years since I posted my comment about Celiac social food “funerals”. I’m amazed by the responses. Here’s another challenge. Small town Celiac grocery store hell. In November, the car goes when the lease is up, and the selection of GF food I’ve enjoyed?? for three years from stores 25km away will disappear as well. We live in a small, touristy NS village and I might be the only Celiac. We’ll have to rent a UHaul and load up the freezer once a month and stockpile, because this is a gluten unfriendly place. One woman at a Xmas function asked me, ” You can eat white bread, can’t you?”, as if not being called “whole wheat” meant white flour wasn’t also wheat. I’m certain all you Celiac’s have grown weary of the ignorance, the food searches, and the unwanted adaptations and sacrifices you have to make Every. Single. Day. Of. Your. Life.
To cat
I agree. How far down the literal road can we get until we run out of GF food options? Not too far where I am. I can’t even travel in my own province and be guaranteed safe food. What kind of prison have we been locked in? I can’t ‘cheat’ on my GF diet but I can loathe the boundaries it has placed on both our lives. Who wants to be an 80 year old Celiac? Imagine being in a hospital or nursing home with your special daily dietary demands. No thanks.
Hello,
My name is Pamela. I have been diagnosed with Celiac after 58 very long years. It certainly is a struggle to order out…………just not worth the degrading, judgmental process of trying to order…………holding up the line, complicating the server’s workday, etc.so on, so forth. Yes the depression associated with Celiac is REAL. Even the Doc doesn’t get it. My GI doc retired. I go to family practice doc once a year and it is like pulling teeth to get the labwork I need to check my progress.
very useful info
I do not know for sure I have CD, but the symptoms sound a lot like it. I get the bloating, extreme fatigue and big yarning, quesy, and the gastro problems too. Only thing is sometimes I can eat crackers or bread, pasta and no problem, so i am not sure if I have it for sure. Did any of you experience the on and off again symptoms before you were diagnosed?
I was only diagnosed a month ago. Before that I ate pasta and bagels, breading and bakery goods regularly and anything else for that matter. I only noticed the milk in my morning coffee would send me right to the bathroom. An unrelated condition required an endoscopy and BAM, I’m celiac. Immediately started gluten free. Thinking on conditions my parents had, I wonder if one or both suffered without ever being diagnosed. Now I’m concerned for my son and grandson. Unfortunately, not one person I know thinks this is real.
@Linda, You are not alone, just know that, 1 in every 133 individuals is affected by Celiac disease, and yes, it is curable.
R3 Stem Cell
R3 Stem Cell, what utter rubbish. It’s 1 in 100 and it’s not curable. The only cure is not to eat gluten.
I not only have to exclude gluten from what I eat, I will not tolerate being expected to eat junk food in general or food made from killing animals. When I worked as a math professor my supervising department chair told me not to bring my own “weird” foods to faculty meetings where the other faculty were eating doughnuts and drinking Coke, he offered me sauces that contained gluten. He ascribed my dietary choices to the fact that I am diagnosed autistic in addition to diagnosed with celiac disease after having to do time in hospitals from what gluten was doing to my intestines. After I quit that job because of its hostile and abusive work environment my rejection of “normal” foods contributed to my getting fired from another job even though I explained why I brought my own food; their normal food was not good enough and that offends some people.
Linda, Ellie,
Your stats, “1 in 100” or “1 in 133” are not actual empirical statistics. These figures are deduced. For whatever reasons, our medical community refuses to actually test for celiac disease as part of a broader preventive measure. Why not make it part of the annual blood testing that many people have? Perhaps because there are no pills to prescribe, so there’s no incentive. Most celiacs are asymptomatic, how can a physician convince an asymptomatic patient that he or she must go a life altering diet?