Tag Archives: celiac delay in diagnosis

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Revisiting the Past

I’ve worked really hard over the last few years to try not to revisit my past and live in the present moment. I’ve also been recently working on staying off of my phone, the internet, and social media so that I can focus on my kids and family this summer. I failed at both of these things yesterday pretty miserably…

I am a member of a physician-only online forum and I came across a recent discussion regarding MDs’ sentiments about how to handle patients who come into their offices with “laundry lists” of complaints, i.e. the patient who complains of feeling overall unwell with problems such as headaches AND fatigue AND body aches AND abdominal pains. Although some were empathetic to patients like this, the majority of doctors who commented were rather critical. The general themes of their comments were that patients like this, with numerous vague complaints and problems, are usually “crazy,” their symptoms are likely all in their heads, and that their symptoms best be treated with some combination of therapy, antidepressants and recommendations for exercise and weight loss.

This discussion hit home for me because I realized that I used to be one of these so-called “crazy” patients. Prior to my celiac diagnosis I experienced years and years of vague symptoms and I never felt “well.” Some of my main physical symptoms/problems included the following:

-feeling tired all of the time
-difficulty concentrating
-diffuse joint pain and swelling
-irritable bowel syndrome (chronic diarrhea, bloating, and abdominal pain)
-TMJ
-my nails and hair stopped growing
-intermittent chest discomfort
-cystic acne

I believed that my symptoms were my own fault and due to some combination of stress and/or depression, because this is the answer that I was given by most of my own doctors (in part because my symptoms did not fit into a neat little box). So, when my physical health did not improve with treatments I underwent, such as going to therapy, antidepressants, working on stress management, and improving my sleep and exercise habits, I became discouraged and felt like an especially huge failure.

Fortunately, once I was diagnosed with celiac disease (was tested only because I asked for it after reading an article about it) all of my physical symptoms went away rather quickly. Despite this I still questioned whether or not my improvement was just due to some sort of placebo effect from the diet. It was not until I had my symptoms return every time I was accidentally “glutened” that I finally embraced the belief that I was not “crazy” and that there was an actual medical explanation for why I had been so sick for so long. I am one of the lucky ones who was actually able to get a medical diagnosis that explained my poor health…

I felt compelled to share my celiac experience on the MD forum, in hopes that perhaps a few of the doctors might consider celiac disease when they have a patient with numerous symptoms that do not, at first glance, appear to fit with any specific diagnoses. A few other physicians bravely shared their experiences with other chronic and misunderstood diseases as well. We agreed that it is often not until a doctor has the experience of also being a patient that he or she can fully empathize with what it feels like to have symptoms minimized, ignored, and/or criticized. I was happy to be able to connect with a few other like-minded physicians via the forum, despite my initial disappointment reading the negative comments.

One of the most important “take home” messages from reading all of the comments on the forum was that if you, as a patient, do not feel like your doctor is listening to you and/or taking you seriously, to stop seeing her and get a new doctor. Another recommended approach was to seek out an integrative or functional MD, as many of the physicians trained in these areas are able to have longer visits with their patients and may also be more open to thinking “outside of the box.” I am learning more about these approaches, as well as other options, in my ongoing Whole Health Medicine Institute training, which I hope to write about in a future post.

I wish you all of you a wonderful and peaceful GF summer. We are preparing to move again in a few weeks (another future post) so my summer has not been peaceful but it’s definitely been an exciting one. Take care!