Here are two pretty disturbing facts regarding celiac disease and the medical community (source: CDC):
- 85%-95% of celiacs in the US are either undiagnosed or misdiagosed
- The average length of time it takes from symptoms to diagnosis is 4 years, in which time the risk of developing neurological problems, osteoporosis, cancer and a host of other problems increases.
This is unacceptable and it’s why I originally started my Doctor Horror Stories page. It’s a page filled with story after story of patients who suffered needlessly simply because a doctor didn’t look for celiac. It’s sad that many doctors just treat the symptoms without looking for the cause. Who wins? The doctors and the pharmaceutical industry. Who loses? Who do you think!
Here’s a recent email I received from someone who was sick for 11 years, suffered endlessly and eventually was taking 14 different medications per day. This just ain’t right. Here’s her story:
In 2007 I was rushed to the ER from high school because the school nurse thought I had appendicitis. Turns out I had developed an ovarian cyst even though at the time I hadn’t had my first visit from aunt flow. So at the tender age of 13 I was on birth control to control my ovarian cysts, not a period. I spent a lot of my high school years in the nurses office due to stomach pain, headaches and general overall bad feelings. The nurses would sigh, call my mother and tell her I was “having anxiety and getting physical symptoms again.” I would speak to my mother feeling embarrassed and trying to speak up that I wasn’t just anxious I couldn’t control it.
Fast forward to 2012, I had an exploratory laparoscopy, my pelvic pain had gotten worse, irregular cycles, so my doctors were looking for endometriosis. Nothing was found except for 2 dozen cysts in my ovaries and my OBGYN said “the help you need is with a different type of doctor” and handed my a referral to see a psychiatrist.
However this was only the first doctor to call me crazy. Starting in 2013 I was put on a cocktail of psych drugs.
I wasn’t sleeping: you have insomnia, here’s a pill.
I couldn’t focus because my brain felt like it was in mud: you have ADHD. here’s a pill.
You have mood swings and feel like crying? Oh you’re bipolar, here’s a pill.
Until that led to 14 medications a day.
At the beginning of 2014, I was 185lbs and at the end I was 87lbs. At the end of 2014 I married my best friend and we moved out of state for his duty station. After a year of being on hardcore psychiatric drugs and still not getting better only constantly being drugged out of my mind unnecessarily I started the path of coming off these drugs with my new doctor. A lot of them didn’t even work, I was diagnosed as an “ultra fast metabolizer” because 70-80% of pharmaceuticals don’t make it to my blood stream. It’s an ancient enzyme that protects the stomach from poison. (Huh, this should have been a red flag but no.)
The whole year of 2015 I spent coming off the drugs and my BMI stayed below 18. Here we are 11 years later at the end of 2015 and I’m still experiencing total body symptoms that are “seemingly unrelated”. In 2016 now off half the medications my symptoms picked up in overdrive. Extreme abdominal pain, headaches, fatigue, and more.
October of 2016 prompted another exploratory laparoscopic surgery looking for the cause of my suffering. No endometriosis! I should be happy yes, but I have a 5 inch binder of tests and results all telling me what it isn’t. They did see abnormal findings in my intestines though. Unfortunately immediately after this surgery we had to move again.
Starting in 2017, I picked up care knowing I needed to focus on my stomach pain. That was the main complaint, the others were all secondary. At this point, the abdominal pain was comparable to having your intestines squeezed by the hulk. The doctors were so focused on treating the symptoms and not the cause, I feel like this helped delay the diagnosis.
2017 was filled with an endoscopy, cat scan, ultrasounds, and tons of blood work. Pretty much every year since 2007 has been filled with scans, procedures, and countless blood work. It’s been one hell of a journey to this diagnosis. And it feels so underwhelming.
Am I even allowed to be upset with finally having answers? Upset that I lost all those years because of what I was eating and doctors never connecting the dots? Thanks for letting me rant Gluten dude. Now I’m off to enjoy my GF Kind bar.
Yeah…you’re allowed to be upset. But my best advice is to let it go sooner than later. Accept your diagnosis and focus on your healing. You’ve been getting the shaft for so long, it’s time to get busy living.
Need to Vent?
I hate celiac. You hate celiac. We all hate celiac. With all that pent up anger, people need a place to vent.
Well…I invite you to lie on the Dude’s couch (figuratively speaking) and spew away. There’s just one rule: Once you’re done venting, you need to move forward and put the negative vibes on the back burner.
Positive energy brings positive results.
Don’t you feel better already??