Celiac.com 12/29/2017 - Do you remember the moment when you were diagnosed with celiac disease or gluten sensitivity? Most people I talk to have it etched in their memory. After all, the information is life transforming. Yet, I doubt if most of us understood the enormity of the information until time passed and we had the opportunity to actually fully understand what it meant besides the gluten free diet (GFD).
Celiac disease or gluten sensitivity is such a difficult illness to live with because of the social and cultural fallout we are forced to deal with as a result of having to be on the gluten-free diet. We quickly learn how difficult it is to negotiate the world having to live on the gluten-free diet.
Let's start with how much food is involved in normal social situations: a family gathering, a party, going out to eat for any meal, a wedding, and for kids of all ages, school, camp, etc. Until it happens to you, it is very difficult to comprehend the enormity of the change and its limiting impact. Change is something people do not like, even if that change is good. And we most certainly do not like to change the way we eat. Just talk to anyone who has ever been on a diet. Unfortunately for those of us with celiac disease or gluten sensitivity, the diet is not optional. And, it's hard; so hard in fact that some people cheat. And ultimately, they pay.
Culturally, food is hugely important. Food is almost always involved in every occasion that involves spending time with people, dating, any rites of passage including bridal showers, baby showers, weddings, and birthday parties. And there are the holiday gatherings. Every single time you are invited to attend one of these events, you have to stop and think about whether it's worth it to attend. If you go you will either have to eat before you go, take your own food or ask the hostess to make special arrangements. You not only feel like a burden upon those in your social and family circles, but you find yourself stressed out by the mere prospect.
And the social consequences are enormous. The very people life you have always relied upon for support, begin to drift. You find yourself shocked and saddened by the reactions and behavior of family and friends who you never suspected of being unable to handle change in you. It's hard not to take personally, but their reaction is not about you. They most likely react this way because your life is now too restrictive for them. Just like you, they want to be able to go wherever they want to eat, serve whatever they want to serve and not have to think about it twice. But unlike you, they still can. And this inevitably leads to conflict. Then your feelings get hurt and they are frustrated and you simply stop getting together as often because, in the end, it's just easier.
I believe that is why people with this disease enjoy socializing with others who are also living on the gluten-free diet. We are trying to avoid the social isolation, loneliness, and shame. We want to forget our fear of the unknown, feeling like we no longer fit in, as if we are lost, or in denial and maybe needing more information. In a nutshell, we feel crazy. Because we cannot do something most people can do: eat normally. These feelings are only a portion of what I have learned about people who are forced to live on the gluten-free diet experience. Parents of children impacted with celiac disease or gluten sensitivity share these feelings as well.
In the end, you need to give yourself time to fully understand the gluten-free diet, and in order to keep yourself safe, become vigilant to all of the hidden places gluten can hide. We do know that those who stay on the gluten-free diet and avoid gluten as much as possible feel better emotionally much more quickly than those who do not. I cannot underestimate the need to consult a good dietician. You need to find others living on the gluten-free diet; they can often be found through local support groups. Some of us might find it helpful to talk with a therapist who is familiar with celiac disease, gluten sensitivity or chronic illness in general.
Lastly, you also need to remind yourself that you cannot change how your body reacts to gluten. And you cannot change other people. What you can change is your perception and attempt to understand that while we may require a different diet to stay safe and healthy, those who do not have our diagnoses do not. Our experience of life, then, is changed. We have had change forced upon us. Our friends and family have not. The only thing different to them is that we are telling them we can't eat the way we used to. I think the sooner we accept these facts, the sooner those around us will as well.
You are not crazy. The way you have felt since the day all of this began for you is perfectly normal. Yes, some people have serious depression in addition to celiac disease and gluten sensitivity. This requires treatment in addition to the gluten free diet. For some, the depression and anxiety are alleviated over time because of the gluten-free diet and subsequent healing. In the end, this is a difficult but doable road and you are in good company.