Originally written by Richard Sowa for GIG, 2012.
Updated by GIG, 2018.
Though more commonly diagnosed in women, celiac disease is increasingly being diagnosed in men too. Overall prevalence of celiac disease is now believed to be about 1 in 100. As to how many of these are men, that’s unknown. As is the case for all autoimmune diseases, for unknown reasons, prevalence is higher in women than men.
One thing about celiac disease in men is for sure. There are men who have celiac disease but just won’t admit to it. This is the Macho Man part. We are tough. What’s a little stomach ache now and then? Diarrhea after a couple of beers and pizza is all part of being tough, so what’s the big deal?
As most of us men who have been diagnosed with celiac disease now know, it could lead to all sorts of serious health complications later in life if the gluten-free diet is not thoroughly followed. Your small intestine may just be sitting there waiting to give you a potential case of adenocarcinoma if you continue to gluten it. (This is a form of malignant cancer that develops in cells of the glandular or secretory epithelial tissue that lines certain internal organs like your small intestine.) That doesn’t sound like something anyone should ignore.
We seem to understand the health implications of continuing to eat gluten after we have been diagnosed with celiac disease, but what about the psychological impact? What about the thought, “I can’t go out with the guys and have a few beers and eat that fantastic pizza that I love so much?” And what about my Saturday mornings at the bagel shop before my golf game? I have been buying donuts for the office every Tuesday morning for the past six years. Now what am I going to do? What am I going to tell everybody?
There are various approaches to handling this situation. In an informal survey I did, some men said they still meet with friends and continue to explain that they can’t drink beer and eat pizza anymore, period. Others have taken their own food and drink with them. On the extreme end, some just stopped meeting with some of their friends.
Since celiac disease is a life-changing event and serious medical issue, how are men handling their diagnosis?
In October 2009 I rushed to the hospital emergency room, where I was admitted to the hospital for the next five days. During that time, I was given wheat toast and other wheat-based foods by hospital personnel. I was sick and getting sicker until someone finally performed a colonoscopy and an endoscopy on me and discovered I have celiac disease.
My gastroenterologist at the time was not very familiar with celiac disease. He told me he had about six hours of study on autoimmune disease, of which, diabetes was the main topic.
He then told me to talk to a dietitian about what I could and couldn’t eat. Unfortunately, this particular dietitian was not very familiar with celiac disease, so I was on my own.
Fortunately there is a lot of good information available today to help get us through the initial shock and the ongoing, life-changing way we have to eat. Many organizations and magazines are now available that provide accurate and useful information. I would be remiss in not mentioning the Gluten Intolerance Group’s magazine Celebrate Gluten-Free (add link to sign up to receive) The Gluten Intolerance Group of North America, known as GIG, has provided me and others I know with a wealth of gluten-free knowledge and answers. I feel fortunate to have discovered the organization. This is where I would recommend you begin and build from.
The psychological impact on me was difficult at the time. As I thought about what all this meant, I realized that my life had just changed - forever. All of the things I liked to eat, especially pizza, were gone forever, or so I thought. I wasn’t yet aware of all of the gluten-free options available. Being single, I wondered how I was supposed to go on a date to a restaurant and explain to the woman that I could only eat certain foods because I had this “severe food allergy.” I started to call it a food allergy. It sounds so much better than saying you have a “disease.” I discovered that for almost every gluten-containing food I had to give up there was a gluten-free alternative ready to take its place.
The psychological impact in the first two years was really very difficult to handle. I lived in an area in the Midwest that didn’t seem to have a clue about celiac disease or gluten-free living, so it was a constant challenge to go out to eat. I eventually stopped eating out because I got glutened several times as I was learning what I could or could not eat. Getting “glutened” meant several weeks of feeling awful.
When I decided to write this article, I came up with a questionnaire and solicited responses from a number of guys. Several people participated in phone interviews and several sent me their completed questionnaires.
We all seemed to have similar issues and experiences with our doctors. Most of the guys said that when their doctor diagnosed them with celiac disease the doctor told them to meet with a nutritionist or dietitian who was familiar with celiac disease.
Most of the men had been suffering with stomach problems, anemia, and diarrhea – the same issues that affect women. But because they are men and feel they should be tough, they just accepted all these issues. Most of the married men said that their spouses have been extremely supportive of them.
My situation was a little different because I am single. It seemed more difficult to adjust my life and learn how to cook gluten- free. I couldn’t jump into the car and go get a burger and fries anymore. Learning how to cook and eat gluten-free became a major challenge for me.
The one thing that was consistent with all of the men I talked with was that they were not angry with anyone — not themselves, the doctor or anyone else. I find that particularly interesting. It’s difficult when you have been told that your life has been forever altered and you must change your eating habits or suffer dire consequences. It seems that that would shake anyone. They did admit that they were frustrated and disappointed that their lifestyle had to undergo such a radical change. Yet most of the men taking part in this article said they just accepted the diagnosis and moved on. They were also relieved to finally find out what was wrong with them and what they could do to feel better.
Having a supportive spouse also made it easier for them to still go to social functions. Some mentioned that some of their relatives were not as supportive as they thought they might be.
I know that some friends and relatives would say to me, “Oh, just have a small bite. A little piece of brownie isn’t going to hurt you.” It became a challenge to be diplomatic in handling those who just don’t understand. This can wear on you after a while. Even after explaining it to them, several of my friends and relatives still couldn’t understand why that little bite was going to hurt me.
People mean well, but they don’t truly understand your health situation. Men are programmed – at least in my generation – not to show a lot of emotion or complain about having a stomach ache. Many times when I was younger I would be tormented by my sibling and cousins for being a cry baby because I always seemed to have a stomach ache.
Since celiac disease is an inherited disease, I’ve had the predisposition to develop it all my life. I believe that my celiac disease was triggered by my brother’s premature death in 2009. This type of stressful “triggering event” seems to be a common occurrence with most of the people I know who have celiac disease.
Several of the men I talked to said they could look back into their childhood years and remember not feeling that well whenever they had that “healthy” bowl of wheat-based cereal that Mom had served them for breakfast before school.
One guy said that his constant stomach problems had kept him out of the military. He had gone for several Army physicals and told the doctors examining him that he had these constant stomach problems. They didn’t pay much attention and passed him for induction into the military. He had to go back to his family physician, who gave him a letter stating that he had spastic colitis, which immediately failed him for induction.
But this also had a negative psychological effect on him. All of his buddies were going into the military and there he was, 4F “unfit for military service.” The military didn’t want him. This was at the height of the war in Vietnam, so he wasn’t happy that he was being drafted, yet he was disappointed that he couldn’t be with his friends. He eventually got over it and continued on with the stomach aches until diagnosed with celiac disease 40 years later.
One of the things that seemed to raise some eyebrows with all these men was whether or not anyone else in their family might have celiac disease. Since celiac disease includes a strong genetic component, they said that finding out who else in their family might have it became a major issue.
One guy spent several weeks trying to figure out where he got celiac disease. Since both his parents and sibling were deceased, he wasn’t sure where the hereditary connection was. He wanted to find out, and asked all of his current living relatives. Nobody could give him a definite answer. His biggest concern today is his own children. He has asked them to get tested. None of them have. Only one has decided to go on a gluten-free diet. He said he feels a little guilty that he may have passed the gene on to one of his children and he is also frustrated because the adult children won’t get tested to get a definitive answer.
I was pleasantly surprised that no one told me that he became depressed when he was diagnosed, and none of the subjects had developed depression since. That’s not to say that it doesn’t happen, because depression seems to be a highly probable reaction to trying to adjust to a gluten-free lifestyle. I don’t know whether being the macho man that some of us men try to be means that we just wouldn’t admit to being depressed or we don’t or won’t accept the symptoms of depression.
There is not a lot of formal academic or medical information available on the psychological impact on men who are diagnosed with celiac disease. I found a few articles that talked about depression, irritability, and anxiety which may be triggered by the nervous system because of the effect of celiac disease. Also mentioned was the impact that stress may have when adjusting to a gluten-free lifestyle.
I call it a gluten-free lifestyle rather than a diet because I feel it is more than just eating gluten-free food — more than just a diet. You now have to contend with your family events and all the emotions around your family’s not understanding why you can’t have that little piece of whatever Grandma slaved over a hot stove to make.
You have to contend with your friends and all your favorite restaurants that you still want to go to but must now be very careful regarding potential cross-contamination.
You have to contend with the office parties and out-of-town conferences where you can never feel entirely comfortable anymore. Who wants to get glutened and sick 1,000 miles from home?
Will my co-workers and my boss understand? Will this prevent me from getting promoted in my job? Should I even think this way?
This is why having celiac disease is more of a lifestyle change than just a diet. We have to change our diet but we also have to change our thinking and our attitude. It would have been a lot worse if the doctor had said to me, “Rich, you have cancer, and we can’t do anything for you.” But he didn’t.
So, like all the men who participated in my survey, I know that until someone comes up with a cure or a pill, I am stuck with celiac disease. To all of the spouses, girlfriends and partners out there, from all of us guys with celiac disease, thanks for understanding and helping us get through this difficult lifestyle change.
The bottom line: Celiac disease may be annoying, inconvenient and life-altering, but at least I don’t have to take medications or do anything more than watch what I eat. That’s a pretty simple fix for a lifetime challenge.
-Kit Kellison, “The Psychological Impact of Celiac Disease.” n.d. Accessed 8/2012. http://www.enabling.org/ia/celiac/doc/PSYCH_IMPCT_CD.pdf
-Racheline Maltese, Yahoo! Contributor Network, Sept. 26, 2012, “The Emotional Impact of Celiac Disease: Adjusting to Celiac Disease Can Be Difficult.” 9/26/2006. Accessed 8/2012.http://voices.yahoo.com/the-emotional-impact-celiac-disease-81010.html
-James Greenblatt, Psychology Today, 5/24/2011, “Is Gluten making You Depressed? The Link between Celiac Disease and Depression.” Accessed 8.2012.