By Krista A. Lample, M.Ed
It took me about 10 years to be diagnosed with celiac disease. Seemingly unrelated symptoms plagued me to the point where I sometimes felt like a hypochondriac. Doctors did not take me seriously. Most do not know much about celiac disease in my experience AND what they do know is often not the entire picture. Because I didn’t always have the “normal gastro presentation”, doctors told me my issues most likely were elsewhere. Not that I was thinking I had it either. I didn’t know what was wrong, I just knew it was something. It was a demoralizing, discouraging and diminishing experience. Unfortunately, it was something I had experienced before.
Interesting how my celiac experience mirrored my eating disorder experience. I was not diagnosed until I was in recovery. I had struggled for about 10 years as well. To be fair, eating disorders were not at the forefront of anyone’s mind back then and the mental health stigma was much stronger than it is today. Also, I didn’t have the “normal eating disorder presentation” and when I did see professionals they told me that a) I wasn’t that bad and that b) my issues probably were not serious or they were entirely physical. I did not think I had an eating disorder either. I just knew that something was wrong with me. It was a demoralizing, discouraging and diminishing experience.
In both cases, it took a professional that was able to think outside the box and be curious and creative. It took someone who really got to know me and was able to listen. They didn’t make assumptions, they asked questions. They weren’t going through a checklist, they were open to discovery. They looked at me as a unique individual with a unique history. I wasn’t just a diagnosis that fit into a mold. I understand the reasons for diagnostic criteria. But it’s also important to look at the art behind the science. If one professional from my past would have said, “Well she doesn’t meet this exact list of criteria but I am not an expert and need to refer” or even studied a little more to discover that in the case of both Celiac Disease and Eating Disorders there is more than meets the eye.
Celiac Disease is an autoimmune disease that causes the small intestine to attack itself with inflammation when gluten is ingested. Obviously gastrointestinal symptoms are very common, but there are a variety of other symptoms that can be present as well and some people never present with gastro issues. Many doctors have a rigid view of what celiac disease can look like and do not do any research beyond that and so people like me get misdiagnosed and not even offered the proper tests.
Eating disorders can present as a wide range of psychological conditions causing eating habits that impact your health both mental and physical. Many doctors and therapists only view eating disorders in terms of anorexia or bulimia and if you don’t binge and purge or restrict and are emaciated than an eating disorder is not considered. A rigid view of what an eating disorder is can prevent someone like me from getting the help they need.
Let me be clear. I was not diagnosis shopping in either case. I did not already know the diagnosis I was looking for and trying to find a doctor or professional that would give me that diagnosis. This is not about that. Celiac disease wasn’t even on my radar for a long time and I had been convinced that I didn’t exactly match anorexia or bulimia and thus did not have an eating disorder. I didn’t know what was wrong. Interestingly enough, I wondered in both cases whether I had cancer or something.
I am grateful for the therapist who listened to my story. Who asked questions. Who sat with me while I was trying to eat. Who observed. Who walked with me when I couldn’t stop moving. Who took my panicked call at 5am after not sleeping all night. Together we went through a timeline and created plans and so I trusted her when she taught me about Anxiety and PTSD and Trauma and how those things were impacting my life. I trusted her when she offered me better tools and skills than the ones I had found for myself. I wasn’t a checklist to her. She believed me that things weren’t right with me.
I am grateful for the new doctor who saw me 4 times in 2 weeks and studied and talked to colleagues and asked questions about my symptoms. Who emailed me to ask a question she had forgotten to ask. Who called to check and see if a medication was working for the ulcers that were lining the roof of my mouth and throat. When she came back to me and said, “ I am almost positive we are looking at something autoimmune” I think I cried. She believed me that things weren’t right with me.
My intention is two-fold. The first message would be to not rely entirely on checklists and labels and what is thought to be a “normal presentation”. Because I didn’t report gastro symptoms with my celiac disease, it was entirely overlooked and dismissed for a long time. Even after I had done some research and tentatively brought it up. Because I didn’t experience body image distress or have food fears or count calories, my eating disorder was downplayed and explained away by other things.
My second message would be – don’t give up. If you have concerning physical (or psychological) symptoms, keep looking for answers AND find those professionals who are willing to take the time and look with you. A professional who will go through the weeds with you. It’s about finding someone who will say, “I don’t know” and/or “Let’s try and find out”.
My point is to not doubt your intuition when you think something isn’t right with your health. After all, you know yourself better than anyone. Find professionals who won’t dismiss you. Ask for what you need. Be the advocate for yourself that you would be for your dearest friend. You are completely deserving of health and happiness. Now go get it!Share