In the last post of this series, I asked these questions:

1. Did anyone ever think you had an eating disorder before your 
diagnosis of celiac disease? How did they, or did they not, approach 
you if they thought you did? 

2. What do you think are the similarities between eating disorders
and celiac disease? 


I was not at all surprised that many people who responded had in the past been ‘accused’ of having an eating disorder prior to their diagnosis of Celiac Disease. From assumptions from friends feeling they need to do an eating disorder ‘intervention’ to nasty comments from doctors about how you are causing the medical issues yourself by binging, purging, etc, some of us have heard it all (me included). People don’t really approach the topic nicely either, usually rudely (and bluntly) from the experiences which have been shared with me. 


But what do body image, Eating Disorders, and Celiac Disease/Gluten Intolerance have in common? Well, lots… 


I’ve already discussed my theory of the link between body image and celiac disease in the past posts in this series, and the link between eating disorders and body image is an obvious one talked about through out schools, social work programs, pathology classes, and the medical field. Our culture simply manifests these difficulties with in our youth, making them feel that they must be thin to be beautiful. As a result many individuals do turn to eating disorders, causing medical problems that can be life long if not deadly. According to the National Eating Disorders Association, 10 million females and 1 million males in the United States suffer with an Eating Disorder, while millions more suffer with binge eating and 80% of females in general are not satisfied with their looks. 1


With such a high rate in the United States, it is no wonder then that Celiac Disease and Gluten Intolerance in it’s pre-diagnostic stages is sometimes misinterpreted as an eating disorder. There are many common elements, such as appearing thin and sickly, showing vitamin deficiencies in medical exams and blood work, and experiencing mood fluctuations and fatigue (just to name a few). For many, like myself, the act of getting physically sick after eating can appear akin to binging and purging to an unknown by standard. Our aversion to food and inability to keep it down in some cases, can increase these doubts in many.  But, we can go beyond such experiences to look at the actual co morbidity (dual diagnosis) of the two conditions. 


The link between Eating Disorders and Celiac Disease is less often discussed, although I was able to find several case studies which put the link into perspective. Now, I am not talking about simply being assumed to have an eating disorder, but rather developing one that meets DSM Criteria because one is predisposed in some way. Based on these case studies, this dual diagnosis can be taken from two perspectives. First, individuals may first receive a celiac disease diagnosis prior to developing an eating disorder, or second, an individual may be undiagnosed with Celiac Disease and develop an eating disorder prior to receiving such a diagnosis. In the first, the restrictive diet of Celiac Disease appears to psychologically cause any predisposition of an Eating Disorder to emerge and further limit an already limited diet. In the latter, the symptoms of a disorder may intensify and exacerbate an underlying eating disorder that was previously not present 2,3. 


 In my opinion, from what I can deduce from these studies, it appears that a fear of food brought on by symptoms of Celiac Disease can lead to disorganized eating and ultimately an Eating Disorder regardless of the pathway. Individuals could develop a fear of food from their symptoms or diagnosis, simply being tired of being sick all the time, and as a result develop an eating disorder by way of avoiding food or making themselves sick to avoid sickness. At the height of my sickness pre-diagnosis I stopped eating all together, and it took me months to wean myself back into eating healthily. I was just so used to being sick that I had become afraid of food, so there is no doubt in my mind that these conditions can often be comorbid because of this fear, if nothing else. 


Even post diagnosis, when an eating disorder isn’t present, the two conditions can still be linked. As previously stated, the two conditions are so similar that there is the assumption, by some, that Celiac Disease or gluten intolerance can be used as a ‘way’ to limit food intake by those who want to ‘watch their weight’.  Friends, and even doctors, can ignore your ideas that you may be gluten intolerant or have Celiac Disease because they are caught up on the Eating Disorder they visualize as being the core problem. This presumption can be linked into another article I wrote about the stigmatization of having Celiac Disease in a world which does not understand. 


For Celiac Disease, Gluten Intolerance, and Eating Disorders to be dis-enmeshed, and for better diagnosis and treatment to occur for all, these studies show that the public and clinicians need to be better educated. For a real life example of how these two conditions can exist co morbidly, or be confused, you can check out a discussion board hereopinion, the connecting theme here is that we need to also have a better perception of body image in America to help along this pathway. We cannot interfere with our health, diagnosis, or treatment in the name of being thin and need to prevent individuals from thinking that is okay. The National Eating Disorders Association has two helpful lists to help us in the right direction: Check out their “Ten ‘WILL-powers’ for Improving Body Image” and “The Steps to Positive Body Image“

NEW RESEARCH ADDED April 9th 2017: This topic is still a hot one in the Celiac Disease community, and recent research has made an even more solid connection between Anorexia and Celiac Disease in women. The study, conducted in Sweden, found an increased risk of Anorexia diagnosis in those Diagnosed with Celiac Disease (even years after diagnosis) as well as an increased risk of Celiac Disease in those diagnosed with Anorexia. According to the researchers a initial misdiagnosis, focus on diet, shared genetic factors, and surveillance bias (these two conditions being studied to the extent they have been) could account for the association. More research is needed to uncover why women with CD are almost two times more likely to be diagnosed with Anorexia as the researches say this is the “tip of the iceberg”.