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??
Yes you are absolutely allowed to be upset, and yes there is often a grieving process. It’s only natural. Your experiences don’t magically disappear just because you have a diagnosis.
But please don’t do it alone. I know firsthand how rage can exhaust you, and it can put so much stress on you when you need to heal. So let the community be outraged on your behalf. I hope your loved ones are outraged too, and proud of your strength.
Rant away. Man, some of us were in that state of “What the hell is the matter with me” for 25+ years. My Celiac diagnosis & insterstitial cystitis (bladder disease AI) came the same day. It felt like I got my life back!!! Validation. Learning to avoid the gluten is the challenge. Gluten Dude is a great resource & community. Welcome!
I’m so sorry you went through hell to get a diagnosis. You are 100% allowed to be mad at the world, and at doctors, for not figuring out what was wrong with you and for thinking you were crazy. You are not crazy. There is a huge learning curve after being diagnosed. 5 years later and I still get annoyed that I haven’t yet located a recipe for good gluten free garlic bread. However, I know now that all of my unrelated symptoms have mostly gone away, and I know I’m not poisoning myself accidentally. This community, along with others on facebook and in other mediums, can help you through this so that you can heal and get your life back. Now you can start living and feeling like a normal person again. Yes, it takes time and patience for your body to heal, and to find food options that work for you, and people around you who can support you, but you are on your way to making that happen. Life will get better from here.
I too am around the same age, female, who went down the path of docs and meds and ERs for cysts and acid reflux for over a decade. I was diagnosed the 13th of June this year 😉 So glad to hear my journey is not as unique as I made it out to be! Glad we both have the diagnosis we need!
Welcome to the party! I can totally relate. Imagine my shock that after surgery that removed abdominal adhesions, but no endometriosis, and a second surgery to remove my gallbladder and a third surgery to explore they finally found Celiac disease. I tell my parents the news and explain the diagnosis…and then I hear from my mom about the terrible blistered diaper rash I had as a baby. The doctor said the vili was destroyed in my intestines. That’s why I had such a terrible diaper rash. Hello???? Anyone have a clue??? The great fix…diaper free outside as much as possible. Are you kidding me? 30 yrs of ER trips for abdominal pain and the appendix they would never remove, followed by one year of three surgeries to finally get a diagnosis of Celiac. Took a while to heal but life is good now! I’ve been a Celiac for about 15 yrs now :0)
It’s been four years for me and I still don’t feel great or have a lot of energy the way I used to. How long did it take for you to feel REALLY good again?
So sorry you were put through all that. What a frustrating nightmare!
I was one of those sick kids too, who was also told it must be “anxiety.” I missed weeks of school at a time, I was out sick so much of the time.
I repeatedly described my intense abdominal pain to one doctor in my early 20s, who quite insistently told me it was proof that I didn’t handle stress well and needed to be on Prozac. I asked her if she would at least consider running some tests to see what could be the matter, and she looked at me as if I were an imbecile and explained that there was no test for depression, so sure she was of the diagnosis. She was convinced that Prozac would take away my chronic diarrhea and intense stomach and abdominal pain … among other symptoms.
My ovarian cysts almost killed me eventually, when the weight of them twisted my ovary around on itself. (A whole other doctor nightmare — I had to go to two ERs before a doctor finally decided I wasn’t actually lying about being in severe pain!)
And now that I’ve been diagnosed with celiac for 15 years, I find that doctors I see want to dispute the diagnosis. They frequently become antagonistic when I mention it. I have discovered that one must always request copies of one’s own medical records after seeing specialists. One of those antagonistic quacks told me that I couldn’t know I really had celiac. How could I possibly not know I have celiac? I was diagnosed by a doctor in 2002, and the difference the change in diet has made on my life and health has been beyond measure. I found out later that he’d put in my record that I was a self-diagnosing food faddist who’d supposedly diagnosed myself 3 years before. Huh? I’d been medically diagnosed, by an MD, for 13 years at that point, and had told him so.
I’ve also been told by a specialist that you don’t have to be eating gluten to have an accurate celiac panel done. She had ordered one without telling me, then announced — gotcha! — that I don’t actually have celiac. (Of course I didn’t have high antibody levels anymore! I hadn’t eaten a crumb in over 10 years!) The medical ignorance and downright hostility when it comes to celiac is astonishing.
Yeah . . . you’ve totally got every right to be pissed off. But you’re going to be feeling better and your health will be better, and that’s what’s important now.
The incompetence! Such misinformation shouldn’t come from doctors.
I had torsion too, it’s agony. And I was told to take Prozac for “IBS” but refused as it only made things worse.
I have never been officially diagnosed yet and I have celiac disease big time. Our healthcare system is profit driven. Count yourself lucky if you actually had a doctor suggest celiac.
My sympathies to you. The Medical system in America sucks and the mis-diagnosis and mistreatment of Celiac sufferers is just one of the many things wrong with it. I was diagnosed last summer at the age of 58. I first saw a doctor for stomach pain when I was 8. Took them 50 years to diagnose me correctly. And my new GI doc (first one left the HMO I’m in) couldn’t understand my animosity or why I was questioning his knowledge and experience with CD. I mean, just because doctors failed me for 50 years why would I not have complete confidence in them now? Try not to dwell on it, it will just eat you up inside (and you’ve already had enough of that) and make you bitter (see me).
Be strong, heal and don’t take no shit from any doctor.
Cheers