the patient celiac

Revisiting the Past

17 comments July 08, 2016

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!

In reply to Amy Burkhart.
Hi Amy,

I wish you had seen the discussion too. I usually skim through the posts but this one caught my attention because of the photo attached to it. And each day there have been more and more insulting and mean-spirited comments. It’s sad.

I wish there were more physicians with clinics like yours for us to recommend patients too. As you mentioned, the key is having the time to be able to discuss and figure things out. Unfortunately, this is just not congruent with our current healthcare system.

7/19/2016 4:11:47 PM
In reply to christine.
Hi Christine,

You put it so well when you recommend that your patients not “settle.” I wish more could be empowered to do this. Your patients are fortunate to have you. Thanks for reading and taking the time to comment too.

7/19/2016 4:10:58 PM
Amy Burkhart
Hi Jess,
I wish I had seen the discussion in the forum. I would have echoed your sentiment. I too was “one of those” and now I look forward to helping those who are the patients that most physicians deem “difficult” or “crazy. Ninety nine percent of the time those patients truly are ill and no one has taken the time (or insurance companies don’t allow them enough time) to try to figure it out. This is truly where medicine fails people. A machine can figure out an algorhythm for an earache. Only a physician with compassion can help those who most need it.
7/19/2016 4:10:26 PM
In reply to Christine Peets.
Hi Christine,
It’s great to “see” you and hear from you. I’ve been wondering how you’ve been doing…
It’s helpful to hear about your experience with your naturopath, and that your MD respects your decision to be GF, even if she doesn’t really understand it.
We need to continue to work on empowering others to be advocates for their own health. I often wish that I had been able to do this when my symptoms started to spin out of control when I was in my twenties.
I hope you are having a great summer. Thanks again for stopping by my page Christine!
7/19/2016 4:09:30 PM
In reply to Shannon.
Hi Shannon,
Your story always makes me so sad, and I know there are many, many others who have had similar experiences to you. My heart breaks for all of them. Like you I have wondered about the long term effects of gluten exposure on my health, and I suspect that there’s going to be much more to come in regards to research in this area.
I know you also are in the position to see everything from the standpoint of being both a patient and health care provider–I try to stay in the middle, but always end up identifying with other patients more than other doctors. Then I struggle to not “doctor bash” too much, because I know there are good ones out there.
Thanks for letting me ramble!
7/19/2016 4:07:40 PM
In reply to Dee.
Hi Dee,
Thank you so much for sharing. It took me at least 9-12 months to “believe” in my diagnosis. I went out to dinner with a group of women for a chef’s table dinner the year I was diagnosed. It was at a restaurant that I trusted (had eaten GF there a few times) and I had been assured ahead of time that all of my food would be prepared separately and free of cross contamination.
I felt fine at dinner but within a few hours at home I became as sick as a dog. I texted some of my other friends to find out if they had symptoms of food poisoning, but I was the only one who was sick. I called the restaurant the next day (my body felt like it had been run over by a truck when I woke up) and I found out that my dinner had been GF but that my dessert had not been due to an oversight. It was after this that I finally believed that my body was reacting to gluten (and had been all along).
And like you, I can appreciate the difference between the fatigue of having small children and the fatigue of having an untreated autoimmune condition! It’s too bad your doctor couldn’t.
7/19/2016 4:06:29 PM
In reply to Julie.
Hi Julie,
It’s so refreshing to hear that your physician has worked with you and advocated for you. She is lucky to have you as a patient, and vice versa. I think that so many go into medical school with aspirations to be able to practice like your doctor and then we just get beaten down to the point where empathy starts to fade. It’s really sad, and I could go on and on about this, but for brevity’s sake I will stop.

P.S. I’m curious how often your doctor will pick up on mast cell problems in her other patients now that she’s seen her first case of it in you–no doubt you will help many others get diagnosed!
7/19/2016 4:06:05 PM
In reply to Julie.
Hi Julie,
You’re very welcome. I remember seeing many “crazy housewives” and “crazy female teenagers with abdominal pain,” etc during my training, as well as a skyrocketing in the numbers who were diagnosed with having fibromyalgia or chronic fatigue syndrome. Now as a neonatologist I review the medical records of my patients’ moms, many who have rather long lists of undifferentiated symptoms.
I’m glad you were able to get answers as well as an apology from your neurologist :)
7/19/2016 4:05:39 PM
In reply to Jacinta MacDonald.
Hi Jacinta,
I really appreciate that you took the time to share your story and am thankful that you were able to get a diagnosis for both you and your son. It totally agree with you about emphasizing the importance of being one’s own advocate–it sounds like you will be able to reach many others through your new career pathway. I wish you the best.
7/19/2016 4:05:15 PM
Thank you! As an RN I have always told my patients they can change doctors….sad that this is not always possible due to health insurance etc. However, I alway encourage them them to be there own best advocate – keep questioning, reading, researching and pushing for answers; not to settle.
7/19/2016 4:04:09 PM
Christine Peets
Thank you for this article. Through working with a naturopth about nine years ago and trying an elimination diet, we determined that wheat, (cow) dairy, and soy were big triggers for my IBS and fibromyalgia. Over the next couple of years, I eliminated all gluten. My IBS has flared from time to time, most recently after going through a very stressful period. My MD is very understanding as she also has IBS. She has recommended that I eliminate all “onion family”foods and all raw foods except bananas. She also recommended that I try a good quality probiotic yogurt–cow, sheep, or goat milk–and stick with easy to digest white rice, potatoes, oat and rice cerals, and bread. I am sticking with the gluten-free diet. I am also working with another ND who is helping me deal with my current dysbiosis. More diet changes, but I feel I have a better handle on this. My take-away is to trust your gut—pun intended–continue researching what works for you and find health professionals who will support you. I may have Non-Celiac Gluten Sensitivity. My MD is not certain that is a “real thing” but she respects my decision to stay gluten-free if that is working. It is an on-going journey, and definitely a PITA (Pain In The Ass) but worth it.
7/19/2016 4:03:22 PM
Thanks for posting this Jess. I am in the medical profession and my colleagues thought that I was a hypochondriac. When I finally changed doctors, I was then sent to a psychiatrist because she thought they I had anxiety and was bi-polar. I went to neurologists who thought that the pain was from prior injuries and gave me nerve root blocks and put my on Triptans for migraines. Low vitamin D? Supplements. I went to dentists for tmj, toothaches and many mouth sores.
I recently read an article about long term gluten exposure and permanent nerve damage from gluten exposure. I still have neuropathic pain and migraines. I wonder if it would be different if someone would have listened many years ago?
7/19/2016 4:02:39 PM
In reply to Dee.
According to the MD, I was just tired because of taking care of my family!
7/19/2016 4:02:06 PM
Thanks so much for the article, Jess. I very much appreciate a voice with the doctors. I know what you mean about not being sure if you REALLY HAVE CELIAC. BUT every step of the way, my body did what I couldn’t believe that it would do, in order to confirm. A recent 200 day supplement error (soy in the capsule) caused me to stumble back into bloating, feeling overwhelmed, slugglish kidney, and liver enzymes raised. Finally, I figured it out. MY lymph system worked like crazy (until the glands ached) as I began recovery. We checked my thyroid (after much healing) and found it was working hard. I am pretty much convinced about the celiac diagnosis. I don’t think my MD believed it, but I am very glad for Nurse Lisa VanWatermulen FNP of Lake Crystal, MN Healthy by Nature.
7/19/2016 4:01:33 PM
I bless the day I found my current doctor, after spending all my life going through doctors. After 57 years I figured out myself that I had a mast cell disorder, and she believed me. She didn’t know what it was, but when I had anaphylaxis and I told her what I suspected, she tried to help in any way she could. I have to go to experts and other cities for treatment, but I still have her and I teach her about the disease. I am her first patient with it, but she wants to be ready if she ever gets another. I went through literal torture until I found her. Lucky for me that I was able to figure out what I have.
7/19/2016 4:00:59 PM
Thank you for sharing this story.
After my diagnosis, my neurologist confessed to having placed me in the “crazy housewife disease” category. Even when my husband was firmly insistant, during every appointment, that I was not like that. The neurologist had me taking medication for fibromyalgia, which clearly I didn’t have.
Again, thank you for being an advocate.
7/19/2016 4:00:26 PM
Jacinta MacDonald
Thank you for posting this, I’m one of those ‘crazy’ women. I facetiously call it hysterical women’s syndrome, which I suffered for years, beginning at 14, until two years ago when we moved from the city to a lovely small town where the old doctor was very empathetic and said that he wasn’t happy to take the ‘undiagnosis’ of the collection of symptoms my previous General Practitioner was fobbing off for years. He said he knew from the minute he read my file that I had Coeliacs. Did the specific tests and sent me of for a gastroscopy immediately, then I and my, at the time, failing to thrive 5 year old. He gave me such hope and confidence!! Two years on and I fell much better, I’m off the gamut of drugs the previous GP had me on to ‘treat the symptoms’ and in control of my, and that of my child’s, life. My little boy is a healthy and happy kid, as am I!
Being your own advocate is super important, I cannot emphasise that enough with anyone I speak to on the topic now.
I’m now studying Nutrition and Dietetics as an almost 40yo…
7/19/2016 3:53:32 PM
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