As we wind down Celiac Awareness Month (and what a month it’s been!), there is one aspect of our disease that seems to get overlooked far too often: the role the medical community plays.
Or perhaps I should say the lack of the role it plays. Or the awful role it plays. Or the disappointing role it plays. You get the picture.
Take a look at the Doctor Horror Stories you good folks have shared on this site. It’s disturbing to say the least.
I am going to hand the blogging duties over to our own beloved Irish Heart today, who shares her incredible story of misdiagnosis after misdiagnosis and how she came out shining on the other side. This is a story that must be heard and must be shared.
The change starts with us.
Irish Heart…the floor is all yours.
Leave the gun. Take the Canoli. (The Godfather)
By Irish Heart
We’re a nation in love with wheat. We love our gluteny goodies: bagels, donuts, pasta, croissants, pizza. cookies.
It’s also why we are often fat and sick and in pain. But the doctors will tell you there’s nothing wrong with you. At least, nothing a pill won’t “cure” anyway.
So they load us up with acid reflux meds, blood pressure pills, heart medications, cholesterol-lowering drugs, pain medications, anti-anxiety meds, sleeping aids, migraine medications, Lyrica for nerve pain and various anti-depressants…and send you packing.
When you say, “But, these are not helping, doctor; they are making things worse!”, they make you feel as if you’re crazy and in need of psychiatric care. It must be “all in your head”.
As I was dying a slow death for nearly three years, I wrote in my journal many times: “I am forgetting things and it scares me. I feel so sick, tired, and I am in horrid pain. I BURN from head to toe. I cannot sit, stand, walk or lie down. I am jumping out of my skin. What the hell is going on? I’d rather be dead than live like this!”
And I cried a lot because of the bone/joint and muscle pain and burning nerve pain. I screamed to the walls, “Why can’t they help me?” Doctor after doctor after doctor. I lost count of how many times my husband patiently drove me to appointments and then held me in his arms after every one of them. We’d been dismissed once again. I even tried homeopathy, biofeedback, months of myofascial release, acupuncture, even rolfing—out of sheer desperation.
Anything to make the pain stop, but NONE of it helped. Thousands of dollars spent on nothing.
Eat MORE whole grains—you need fiber, I was told by the GI’s Nurse practitioner…So, I did.
And my brain fritzed and my nerves fried and I went downhill.
MRIs, EKGs, EMGs—all normal. (but those tests do not find small nerve fiber neuropathy, which 16% of celiacs have)
My bones and joints and skin burn like mad.
Approximately 37 million Americans have arthritis (12%)
I was told I had GERD and IBS for 12 years.
Approximately 60 million American’s–20%–have IBS and chronic digestive problems and 120 million get heartburn (40%)
I wonder how many people are given a Fibromyalgia syndrome or Chronic Fatigue Syndrome DX…and quite possibly left undiagnosed for celiac? My new GI doctor and I have discussed this and we speculate…possibly millions??.
Approximately 4 millions Americans–1.5%–have FMS and between 30-60 million have severe fatigue 10-20%.
I wonder how many people are in mental health wards because their brain function was affected by celiac. I did not even tell people half the stuff I was experiencing for fear they would think me mad.
Approx. 30 million Americans suffer from depression—10%.
Later, when a few other celiacs told me they also had these same bizarre symptoms—burning skin, walking sideways, tinnitus, hallucinations, blurred vision, ataxia—I felt validated. And sad for them because they were told they were “making it up” (one was told she had Munchhausen syndrome and there was “nothing wrong” with her celiac son, either.)
Neurological symptoms affect up to 10% of celiacs.
I suspect the dozens of doctors I saw thought I was just a crazy, menopausal woman.
I am pretty sure they thought I was making things up. I had many of them give me the pat on the back and the suggestion that I needed to do volunteer work or seek counseling.
Really? Who “makes up” a 90 lb. weight loss?? hair loss? vitamin deficiencies? dehydration? migraines?
45 million Americans get headaches (15%) and 28 million get migraines (9%)
I had blood sugar irregularities, found myself sometimes gasping for breath and was given an asthma “puffer” and my heart raced and pounded and skipped beats like mad (but my EKG and holter monitor results were normal—repeatedly)
16 million have diabetes (5%)
12 million have chronic bronchitis (4%)
17 million have asthma (5.5%)
61 million have cardiovascular disease (20%)
Do you think these numbers mean anything?
Yes, me too. And I am going to say it: We’re a nation of sick people because of our standard American wheat-filled diets and because of the medical profession’s inability to recognize Celiac Disease (and Non-Celiac Gluten Intolerance) for what it is.
“The prevalence of celiac disease in the United States has been estimated to be as high as one in 133 individuals. At the same time, only one in 4,700 individuals have been diagnosed with celiac disease. The average delay in diagnosis for a person with symptoms is 11 years. On average, a child will visit eight pediatricians before being diagnosed with celiac disease.”
Celiac is the result of genetic and environmental factors. Predisposed individuals have the disease “triggered” by eating wheat gluten—and the first thing we get as teething babies? Crackers. Cheerios. Zwieback cookies. We are doomed from jump street.
Celiac is a beast that is bigger than anyone in the health care profession wants to admit.
And for the life of me, I cannot understand why.
Doctors told me:
- You’re just sad, anxious and depressed (not my personality at all)
- You’re stressed out (ya think?)
- You’re anorexic (me? I was FAT! but, then I wasn’t. Oh, how I used to love food.)
- You’re just grieving (my beloved Dad had just died)
- You have a thyroid disease (no, I do not)
- You’re menopausal (I had a hysterectomy years ago)
- You have Fibromylagia (nope)
- You have spondyloarthropy –take methotrexate (definitely not… and what? no way!)
- MS? Lupus? and maybe 10 other possible diseases?
No, I don’t!!! (I said to myself).
I heard “take these drugs” – see you in six months.
I tried all of them because the doctors “said so” and I had horrible side effects from them.
I heard “Get a scooter & accept your fate!!” (no, I won’t, I said.)
And I heard this one too: It’s “idiopathic”.
No, it isn’t. It had a REAL CAUSE. GLUTEN and CELIAC DISEASE.
I had to undergo extensive dental work, several surgeries, lost my gall bladder and I have a few AI issues—osteoarthritis and osteopenia among them—and the joint/muscle pain I suffer contsantly has resulted from YEARS of being undiagnosed.
I am childless because no one thought to test for that when I kept miscarrying over and over and infertility treatments failed.
With 25+ years of misdiagnoses comes a lot of collateral damage.
But I am alive and I try to reaffirm to others who are seriously ill and losing hope that it is not “all in your head”.
You are not crazy. I believe you.
And it is essential that doctors LOOK at all these symptoms and see that it could be Celiac because left undiagnosed, more AI diseases may well develop and the chances of death from celiac is very real.
“Untreated celiac disease can be life threatening. Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma.”
“Increased mortality rates in those with celiac disease are due to an increase especially, but not exclusively, in intestinal lymphomas. Also, other gastrointestinal cancers seem to be more frequent and contribute to an increase in the death rate for those with celiac disease.”
However,the good news is…if you are diagnosed and go on a gluten free diet, your chances of this happening go down to the same rate as anyone else! And since my DX and starting a GF diet, I take absolutely no medications. I do not need them.
Those “meds I would have to take for the rest of my life”? Hogwash.
Doctors need to stop symptom-treating and start identifying the underlying cause. It’s just that simple.
Oh, we need Celiac Awareness all right. We need it in the medical community most of all.
Dr. Stephen Wangen. Healthier Without Wheat
Marios Hadjivassiliou, MD, Neurologist at Royal Hallamshire Hospital in Sheffield, England.
University of Chicago Celiac Disease Center.