Today is the last day of Celiac Disease awareness month. Though I have known of celiac disease for most of my life, it was only recently and unexpectedly a family member was diagnosed. Celiac Disease is yet another condition in the huge family of autoimmune diseases, one that many people consider rare though it is more common than people suspect. Like a host of other autoimmune disorders it is not always diagnosed expediently.
Celiac disease is not to be confused with gluten-sensitivity, or choosing to eat gluten-free as a lifestyle choice. Not adhering to a strict Celiac diet can result in life-threatening consequences for an individual diagnosed. Even a few molecules of gluten can cause harm to a person with Celiac Disease. Yes, I do mean a few molecules!
My Mom was recently diagnosed with Celiac Disease at the age of 75! Yes, 75. In hindsight she probably had it for years, possibly decades yet neither she nor any of her doctors suspected she might have it. Her diagnosis came somewhat by chance, through a series of circumstances that thankfully provided her with the opportunity for testing.
(Mom and I – Christmas 2015)
Almost two years ago Mom had a FIT screening (a test which looks for fecal blood) which came back positive. Though she did not verbalize it, I am sure like everyone else who receives such a result she thought “oh no, colon cancer”. The fact she comes from as she calls it “a cancer family” did nothing to alleviate her fears. Once she told me about it, I reassured her it was possibly a false positive result. I also reminded her the test was a screening tool, and not necessarily an indicator of a serious issue. She was aware she would need a colonoscopy to follow-up on the test. Something she absolutely was not enchanted with.
I had recently had a colonoscopy done myself, by a local doctor who now only does gastroenterology scopes. Other than the prep which involves doing the Mexican two-step back and forth to the toilet all evening and night before the procedure, I assured her the procedure itself was a breeze. I remember her sarcastic reply of “Yah, sure.” I insisted I was not lying and explained she would not require general anesthetic rather she would receive efficient new sedation drugs that would have her feeling like she went out and back awake in seconds, with no nausea of the type she was prone to from anesthetic in the past. I told her to request the same doctor as I had since I had such a good experience, so she did.
Besides the FIT screening, the other reason for Mom’s concern was that she had begun to have more and more frequent bowel troubles. Often waking very early in the morning to have to have what she refers to as an “evacuation”. Sometimes this would occur days in a row with no seeming cause such as a flu virus, food borne illness or food poisoning. Naturally she became more and more vigilant about what she was eating. She started to have an aversion to travelling very far or in early mornings if no comfortable washroom available on route.
I had discussed my Mom’s on-going issues with a friend at yoga who eats gluten and dairy-free. She told me that I must tell my Mom to have her doctor check her for celiac disease. I assured her I would. Mom did ask her doctor about it and he said “No, you do NOT have Celiac Disease”. And if I recall correctly he also said he didn’t think she had it because she was not “malnourished”. My Mom has never been overweight, or underweight, always a normal healthy weight. Her diet also exemplary.
So Mom did have her colonoscopy. Immediately afterwards the gastro doc came to speak to us and he told her the bowel looked fine, no appearance of cancer. There was no visible reason in her bowel for her frequent trips to the bathroom. He then told her that she should be checked for Celiac Disease with the screening blood test called tTG-IgA. He explained that if that test came back positive, she would require an upper scope at which time small biopsies would be taken to determine a definitive diagnosis. He emphasized she must continue to eat gluten until both the blood test and scope / biopsies were done.
Imagine my Mom’s surprise when the blood test didn’t just come back positive, but extremely high positive. It was multiples and multiples beyond a normal result,approximately 100x greater than a negative value.There was little question that Celiac Disease was the reason for my Mom’s increasing digestive distress. Negative is less than 4, 4-10 is a weak positive, and greater than 10 is positive.
So, Mom returned to the hospital where I live to see the same Gastro doc again for an upper scope and the biopsy of small intestine. When she woke up, the doc came to her bedside with photos showing the damage to the villi in her small intestine. Celiac disease damage was evident in her small intestine, biopsy results later confirmed it for certain.
On the way back to my house we stopped at the store to buy some gluten-free items and Mom began eating gluten-free that very day. Within mere days she noticed a difference in how she felt and the frequency of her pre-dawn bathroom trips diminished. There is no cure for Celiac Disease but with vigilance to a gluten-free diet it can be controlled. There have been times when she has had recurrences of her intestinal distress, which she chalks up to eating something possibly contaminated with or unknowingly containing gluten, but overall she is vastly improved.
Ironically over the years my parents traveled to many countries overseas, with my Mom vigilant about what she ate. She would be frustrated as she was always the one who was careful not to eat fruits, vegetables, and especially anything uncooked such as salads that could be contaminated. She watched others eat everything in sight, while she ate her “safe” foods – breads and pastas – hoping to avoid emergency bathroom trips while on bus, car, or river cruise excursions. How ironic she said she was actually against her knowledge eating the absolutely worst foods for her body.
Mom is also a phenomenal bread maker and once she retired she made all her bread homemade, rich in whole grains thinking she had improved her diet even more.
They say when you know better, you do better. My Mom sure has. I’d be lying if I said that she doesn’t miss some foods she used to love, but can no longer eat nor find comparable substitutes – such as her own whole-wheat flax bread or festive fruit bread. She has educated herself well from various sources, including becoming a member of the Canadian Celiac Association, and joining an on-line forum for individuals with Celiac Disease to share resources, information and support.
I certainly hope now that Mom’s doctor knows better he will do better too. He was taken aback by her diagnosis. Instead of Mom just being upset by his pronouncement that she absolutely did not have Celiac Disease, she took the opportunity to educate him bringing in a list of symptoms often experienced by those with Celiac Disease, with all the ones she experienced highlighted. Mom was diagnosed with osteoporosis years ago, which I had always found odd since she had always been active doing weight-bearing activities, and a consumer of dairy all her life. We will never know for sure but it could be a result of her being an undiagnosed Celiac, osteoporosis is but one symptom.
For more information on diagnosis, symptoms, and living with Celiac Disease seek out your local Celiac Associations or visit these links as a starting point:
Remember if you believe you have Celiac Disease and your doctor does not believe it is possible, do not be afraid to educate yourself so you may have a more informed discussion, as well as the ability to advocate for yourself if need be. I wish you well.