I was hoping to do a positive, life is good type of post today after a long week of media hell (because life IS good dammit). But alas i had to post this…
In response to my Today Show rant from Thursday, where the guest doctor on the show called celiac disease “trendy”, a reader shared her celiac story on my blog. She was beyond disgusted on what she saw on The Today Show, as we all were.
Her story is the result of what happens when celiac disease is not taken seriously and patients are not listened to.
I want to dedicate today’s blog post to her. Please read her story below and share it…it’s an important story to tell.
Hi Gluten dude! I feel a bit of a rant coming on….
It’s misinformed, arrogant “doctors” like this who kept me from being properly diagnosed for many years. I suspect it keeps millions from being diagnosed properly.
From late 2007-late 2010, I tried to find out why I was in so much debilitating pain and dropping weight so quickly. I lost a drastic 90 lbs. because I could not eat or keep anything in me. My entire GI tract BURNED from mouth to rectum and even water burned doing down.
One doctor told me “congratulations on your weight loss”.
Another said I needed to “do volunteer work to get my mind off it all.” (I could not even dress myself or tie my shoes)
Another encouraged me to work out at a gym. I tried but kept feeling faint on the treadmill and then, my legs and back went numb.
I heard “it’s just menopause”, fibromyalgia, the catch-all “IBS and GERD””…and my favorite, “it’s just stress” because my father had just died.
I was offered more drugs than you can imagine: pain meds, anti-depressants, anti-anxiety meds, sleep meds, antacids, thyroid meds I did not need —and even sent to a psychiatrist– to get me to shut up and leave the office. Drugs made my already ripped up gut worse and so I did not take them.
I have no psychiatric problems, but I sure as hell thought I would lose my mind.
We spent $30K out- of -pocket on tests, physical therapy, alternative doctors–anything to to help me get well. NOTHING worked.
I lost major muscle mass and tone, my ability to comprehend, articulate and recall information.
I had difficulty remembering how to cook, balance a checkbook and drive my car, and I suffered insomnia, sores, burning skin, and severe burning neuropathy, numbness, parasthesia and weakness. I banged into walls and tripped down stairs, becoming covered in bruises. I was propped on the toilet when I was passing everything and washed down with cold clothes to keep me conscious.
My poor husband thought I was dying.
I had horrid joint, bone and muscle pain, pelvic floor pain, and kidney and liver pain. I was unable to walk the length of my driveway without gasping for breath, acquiring anemia, losing my hair. I was unable to walk, stand, lie down or stand without agonizing pain.
No doctor could tell me what was wrong. FOR 3 YEARS.
Our life came to a stand still as my husband watched helplessly while I went downhill. I forced myself to keep moving so my muscles would not atrophy as my buttocks and muscles wasted. I dragged myself around and researched endlessly to figure out what the hell was going on.
I was told “it could not be celiac” because my blood panel was negative and “no one in my family has it”. (well, someone has to be diagnosed first for that statement to be relevant and blood panels are negative often enough to keep people undiagnosed!) The GI doctor I saw for years did an endoscopy yes, but failed to biopsy me while down there, yet t I did not know this until a year later when I finally saw the report. (lesson? never trust the word of a “nurse practitioner”–ask for the report and read it yourself!)
They were all Wrong . Wrong. Wrong.
I figured it out myself and brought it back to my PC doc and the rest is history. So many things in my life are explained now: migraines, miscarriages, inability to have children, gall bladder disease, etc, etc.
The very celiac-savvy GI doctor who takes care of me now said he feels so bad for all I went through. He looked at pictures of me from that time and taking into account my own medical and family history, especially that of my father’s, my genes (HLA-DQ2) and the dozens of AI diseases in my family —and said “couldn’t anyone SEE it? You’re a walking Celiac”
I said “Doc, this disease tried to kill me” and if I had not been so relentless, I would either be dead or in a mental health ward by now.
I hope I can get my muscles and my life and “me” back, but the road to recovery has not been easy. I never say die. Now, to make sense of the nightmare we went through, I focus on helping others who are struggling for a proper diagnosis.
CURRENT RESEARCH and the well-respected Celiac experts (like Dr. Fasano) KNOW there is more to diagnosing it than the Celiac Panel and the “gold standard” biopsy.
Some celiacs (like me) blood test negative for various reasons. A stroll through PubMed articles will explain that for anyone who is interested. My doc will biopsy me next month in hopes I do not have refractory sprue from years of being undiagnosed. He was waiting for me to be strong enough to endure the procedure.
There is no question that something has to change in the way the medical community views CD.
While our disease is “treatable” (but not curable), as are most Autoimmune diseases, the serious complications and tendency towards developing other AI diseases (like diabetes, Rheumatoid arthritis, lupus, hypothyroidism et. al ) as well as lymphoma IN CONJUNCTION WITH LONG UN-DXED CD makes this a worthy foe indeed. It’s nothing to take lightly nor is it “easy” for many of us.
So, this disease is “trendy”?? Oooh, so THAT’s what I was during those lost years in what I call Gluten Head Hell–I was being “trendy”. My husband is delighted to hear this news. Here we thought, I was just dying and no one gave a rat’s ass.
Being “trendy” makes it all better now.
Lady, you do not know what the hell you are talking about and I do not know how you call yourself a doctor. Pick up a medical journal once and awhile and learn why this disease is finally becoming diagnosed PROPERLY. You should be ashamed of your reckless comments, but since you spend your time appearing on TV shows instead of keeping current with medical journals, I doubt you have given any thought lately to your oath “First Do No Harm”.
Gluten dude, thanks so much for letting me vent. I feel much better now :>)