According to a Columbia University study, celiac patients reported better quality of life when they participated in face-to-face support groups compared to online support groups. Also, longer duration of face-to-face support generated a greater quality of life.
In contrast, they found lower quality of life reports when patients spent more time in online support groups.
“Coeliac disease: the association between quality of life and social support network participation”
The gluten-zero lifestyle isn’t a walk in the park. It requires hard work, dedication, commitment, and knowledge. The emotional and physical stress of a difficult lifestyle change piled on top of years [often decades] of ill-health, takes it’s toll. Every opportunity for a positive outcome needs to utilized.
Network equipment giant Cisco performed a study of human behavior and the barriers to effective collaboration. Overwhelmingly, the study showed people were more engaged when they could see and hear each other well; interacting the way humans have been doing since the dawn of their existence: face-to-face.
Humans require direct, face-to-face interaction with one another in order to be happy and healthy.
Online groups can be a great source of support, however, it’s hard to replace friendly smiles, nodding head(s) of agreement, the sympathetic touch of a hand, or a spirit lifting hug.
If you do not belong to a local support group, please seek out the nearest group.
Looking for a group? You can search for group national affiliated [Celiac Disease Foundation (CDF), Celiac Support Assoc. (CSA), Gluten Intolerance Group (GIG)] groups here:
GIG of ECW Branch Manager
update: 4/3/19 - Fix broken link to study.
Sadly, this state of affairs is very common. In some cases, it goes beyond a simple lack of support, it crosses over into deliberate sabotage or willful "poisoning" of food.
Those that love us the most, can give us the most trouble about our desire to be at our best. This type of behavior is not limited to the gluten free community; it's quite prevalent in many with chronic health issues.
Fear and Denial and Insanity, oh my!
Why would someone that loves us not want to support us in anything we do - let alone something that might improve our health and quality of life? I suspect there are hundreds or thousands of different answers, unique as the fingerprints of those providing the answers. One of the most common opinions from GF community is fear.
Family members are afraid the health problems we are experiencing are closely connected to their own health struggles. If we are correct about the root cause of our troubles, that just might mean they have to go gluten-zero as well. In terms of celiac disease, it's hereditary, no ifs ands or buts. If you have celiac disease there is a 1 in 22 chance that your immediate family members could have it too, although they may not know it. When it comes to Non Celiac Gluten Sensitivity, gluten knows no family lines; it's just plain bad for everyone. Non Celiac Gluten Sensitivity affects a minimum of 6% of the population. Other medical professionals feel it's closer to 10% and as much as 30%-40%.
Denial is a very good friend of fear; you see them hanging together - a lot. Many family members are in denial - "Oh, I can't possibly have what you have - it's the _____________
While most family members would never say it out loud, some would:
While I don't profess to have all the answers [or any for that matter], I do have some things that might help you cope with misguided, uncaring and selfish family members. Like my Father-In-Law used to say "You can pick your friends, you can't pick your relatives".
1) Be clear about why you are going gluten-free.
Have a plan, have goals, direction, be specific. "I am gluten-free because ____________". If you don't have a clear idea about why you are doing it, how are others supposed to understand? Without direction, it's easy to get lost. It's like going on a car trip without a map or a GPS. If you already have a definitive diagnosis - your goal is clear cut - GLUTEN ZERO FOR LIFE - no exceptions - ever. If your family won't take your word for it, show them your doctor's office notes and lab results.
Having a medical diagnosis generally adds credibility to your efforts. If you doing dietary trials on your own without a doctor's backing, you're flying without a net. This means you'll need extra resolve to say the course. Strap yourself in, it's going to be a bumpy ride.
2) Take gluten-free seriously.
Sometimes, we're our own worst enemy. To be successful at being gluten-zero, you need commitment and consistency. There's no crying in baseball and there is no cheating when it comes to gluten-zero; it's all or nothing. If you don't take it seriously, how can you expect others to take you seriously? Seriously. They get confused and frustrated by your actions. One time you're gluten-zero, the next time you're eating a BigMac. That type of behavior just doesn't play, your credibility goes right down the toilet [pun intended].
Be aware that your own loved ones may try to sabotage your efforts. They may try to tempt or persuade you back to gluten foods. How many times have you heard "Come on, just one bite won't hurt". How many times have they waved your favorite gluten filled food under your nose or even tried to force it into your mouth? Giving in to that type of behavior, only gives them control - and makes you sicker. Stand fast and hold your ground. Eventually they should tire of it because you won't give in.
If you are doing dietary trials to see if gluten might be causing problems, clearly define how your trial is going to work. I bring up trials because it may involve putting gluten back into your diet - this might confuse your family members. Make sure they know about your plan. If you think you can cover up cheating under the guise of "doing a trial", you won't get away with it too many times.
Note: Before you start an extensive dietary trial, try to get tested first. In order for the tests to be as accurate as possible, you need to be consuming gluten. Click here for more info on testing.
If you are wondering, a trial should last three to six months at a minimum (six months is better). Depending on your symptoms, it may take a while for them to disappear, particularly neurological or skin [Dermatitis Herpetiformis] symptoms. Sometimes changes are subtle when you remove gluten, but very dramatic when you add it back in. I noticed changes on removal, but noticed larger changes when I went back on gluten. I started a 8 week gluten challenge to get blood work done and called it off after 5 days due to the symptoms. It was enough for me to determine that I will be gluten-zero for the rest of my days. I did have intestinal biopsies taken before I started dietary trials [yes, my testing sequence was reversed], no evidence of tissue damage was found. While I do not have a celiac disease diagnosis, a 4 month trial revealed gluten was an issue for me.
3) Communicate & Educate.
As simple as that sounds, I find it's not always done. Sit down with them and explain exactly why you want to explore gluten-freedom (see Tip #1). Be open about what you desire from them, so they know what to expect, they can't read your mind. Ask them for their help and co-operation; ask them to be a part of your team that makes you the best you you can be.
If we dig deep inside and look beyond the medical necessity of our food requests, we will find an emotional component. Our requests are an extension of ourselves. When our family and friends fail to acknowledge our food requests, we feel it as exclusion and rejection of us as a person. Maybe it is, maybe it isn't. Sometimes it's hard to tell what is inside the hearts and minds of our loved ones.
￼Opening up a line of communication is so important when it comes to resolution. Having a calm, heartfelt conversation about our health concerns and what it takes for us to be healthy and happy is the best chance we have at getting them to understand. It is up to us to kindly and respectfully educate them on how to do things correctly, no one else will do it.
I invite you to read this informative article on Confrontations vs Conversations from PsychCentral: http://bit.ly/1GQw2q1 It offers some great insights…
Conversations are fueled by curiosity.
Confrontations have an aura of a judicial proceeding.
Conversations frame a problem as something to be solved.
Confrontations have an element of moral superiority.
Conversations happen between equals.
Confrontations shield the confronter from any responsibility.
Conversations say “we’re in this together.
If you have trouble expressing yourself verbally, write a letter. Explain to them exactly how you feel, explain what you go thru on a daily basis, how you'd like to get your life back on track and how much it would mean to you to have their support.
Often times people tend to ridicule or dismiss things that they don't understand. If they are open to learning, find information from a reliable website and share it with them. Try not to overwhelm them with too much information. Once their eyes glaze over, you've lost them.
You might find something helpful here:
4) Letting go
Let's face it, you might talk and educate until you are blue in the face, there's a possibility they still won't get it. Be confident in the fact that you gave it your best effort. Don't let your emotions consume you over their unwillingness to support you. As hard as it may be, you'll be better off if you just accept it and keep moving forward, focus on getting yourself healthy. Don't let them suck you into their darkness.
5) If support doesn't come to you, you go to the support
OK, so maybe your family is a poster-child for dysfunction; incapable of understanding what you're going thru, refusing to work with you on any level...you need to seek out those that understand and have walked in your shoes. Connecting with others that share similar experiences can make the difference between success and failure.
It's imperative to surround yourself with people who are positive and who are pursuing their own goals. Positivity is contagious - so is loneliness and depression - which would you rather be? Dr. Barbara Fredrickson found a Positivity Ratio of 3:1 a tipping point for human flourishing. This means for every negative feeling, thought, experience, we need a minimum of three positive (love, joy, gratitude, etc) in order to be happy. The ideal ratio is 5:1.
Support comes in many different ways. Today, there is a seemingly endless supply of online communities you can join. The great thing about online communities is that they're always open - ready to accept the latest rant or cheer your most recent accomplishment. If online is not your bailiwick, a local support group is the way to go. While online groups can do wonderful things, nothing beats face-to-face contact. It's hard to replace seeing the look on someone's face, the sound of their voice, and at times, the touch of a hand or hug.
Search for local support groups here:
Good luck in your journey!
This article was published in Gluten Intolerance Group of North America's Quarterly Magazine Celebrate Gluten-Free Spring 2013
Update 10/04/22: Add GIG’s Setting Healthy Boundaries article link
Update 03/13/15: Update Tip #2 Communicate & Educate - added Conversations vs Confrontations.
Update 11/23/12: Fixed typos and added additional information.