I was doing some research tonight when I stumbled upon what I consider a most disturbing celiac-related confession on a website that appears to highlight anonymous revelations. The title was I’m Dying and I’m 19…
“I have Celiac Disease and even though I know it’s killing me I still eat and use products containing wheat and flour…I don’t know how to stop doing this to myself and apparently death isn’t good enough reason for me to quit : / I have also recently been diagnosed with cancer and had surgery to remove it and my appendix where it was found.” — Anonymous on experienceproject.com
The skeptical news person in me questions how realistic the preceding “confession” is, but whether it’s real or not, I believe the idea of non-adherence to the gluten-free diet is a real issue and deserves some space on this blog. So allow me to use it as a launching point for a serious discussion.
Sticking and not-sticking with the gluten-free diet
Just last month on Celiac.com a woman started a thread which said on occasion she just couldn’t “stop binging on gluten”. Then the outcry of support came from readers: concerns about depression, nutritional deficiencies, and maybe an eating disorder. The woman said she’d get help and turn things around – and that she appreciated the support.
Even knowing that infertility, osteoporosis, cancer and more can all be a result of untreated celiac disease, what causes a celiac to turn away from the very diet that could prevent all of these ailments? Is it just because someone told them they can’t have it -now they want it more? Is it because they crave certain favorites so much they just feel they cannot deny themselves? Is it pressure to fit in, in our processed-food culture?
One survey conducted two years ago and printed in Medscape showed that the gluten-free diet is is followed in only 50-75% of patients. The reasons: “unclear food labeling, low levels of knowledge about the diet, reliance on processed foods and the cost and availability of gluten-free foods.”
“Only 2 factors were associated with worse adherence, concern that cost made a gluten-free diet more difficult to follow and the admission that changes in mood and stress levels affected the ability to adequately follow a gluten-free diet.” –Dr. Daniel Leffler, MD Beth Israel Deaconess Medical Center, Boston, MA
Increasing Adherence to Gluten-free Diet
So how do you fix this problem? One thing to do, according to the aforementioned research, is to join a support group. This helps increase your knowledge base about celiac and the gluten-free diet, which will help you sort through any unclear labeling and reliance on processed foods -which were mentioned as problems earlier. I know it really helped me shortly after Emma’s diagnosis.
More recently a few studies have other, what could be considered more-clinical, suggestions. One study profiled on thesavvyceliac.com last month recommended doctors begin using a 7 question survey to determine gluten adherence, and then work with the patient to increase adherence.
Another study I found on the National Institutes for Health website recommended trained nutritionist evaluations as the best to help people adhere to the gluten free diet.
With any luck, the person who posted the “confession” will hopefully get some help and begin to follow the diet. And we all wish him or her the best as they go through the process of an early cancer diagnosis.
If you have celiac disease and are struggling with staying on the diet, I highly recommend getting involved in a support group or a celiac organization of some kind. Knowing you’re not alone really can help your psyche. If you think it goes deeper than that, consult your physician about other steps you can take to help you help yourself and get better!
June 19th, 2009 at 10:00 pm
I’ve never really been able to fully accept that I’m a celiac. I was gypped since I was overweight when finally diagnosed 6 years ago after 11 years of symptoms. Why couldn’t I get a little of that “wasting away” syndrome? I keep thinking that maybe they made a mistake and I really don’t have celiac after all. Of course any time I eat gluten, I suffer all the symptoms that say the doctors were absolutely right. Even so, I cheat on a pretty regular basis, and even when I’m “trying” to eat gluten-free I’ll “overlook” that the french fries with my bunless burger are contaminated by the fry oil. I can’t stop. I can’t cheat much during the work week, because the symptoms would interfere with work, but I think about it almost all the time. Then when the weekend comes… I’ll have some rip-roaring gluten-filled dinner on Friday night and use the buffer of the weekend to “recover” enough to start a new work week. It sounds ridiculous even typing it, but this is a horrible hard confession to make. I don’t tell anyone and because I live alone there’s no one to “catch” me… I don’t eat gluten in front of other people – just at home alone. The knowledge that my grandfather died of duodenal cancer (undiagnosed celiac) – as did his father and his grandmother – isn’t even enough to make me stop. I accidentally came across your site, and BAM – there was this post staring right at me and without any comments and I just started to write. i’M hitting submit before I chicken out.