The Challenges I Experienced Before (and After) My Celiac Disease Diagnosis

My path of pre celiac disease discovery and post celiac disease has not been an easy transition. I have had many hurdles, met many narrow-minded health professionals, university councilors and university psychiatrists who lacked an understanding of the disease.

I was approximately age 27 when my life began to spiral out of control due to detrimental symptoms of abdominal pain, bloating, fatigue, swelling, migraine, weight gain, joint pain, social anxiety, attention-deficit/hyperactivity disorder (ADHD), depression, dental enamel defects, ataxia, brain fog and blurred vision. Overall, one of the largest struggles with celiac disease diagnosis is that it contains over 300 symptoms.

Fortunately, in my case with persistent advocation, I received my official diagnosis at age 30; however, based on scientific literature, celiac disease diagnosis can take anywhere from six to 10 years. In retrospect, I felt that the healthcare professionals I dealt with were not taking autoimmune diseases seriously. Perhaps this is the key correlating factor in why a celiac diagnosis can take anywhere from six to 10 years.

Furthermore, my negative experience with being screened for celiac disease has left an everlasting memory of how inadequately prepared some general practitioners, gastrointestinal specialists and psychiatrists are for celiac disease patients. Perhaps this may have been linked to the fact I was the first one in my family to be diagnosed with celiac disease, even though close family members have the diagnosis of other autoimmune diseases.

Hence, following a black and white criterion of diagnosis may explain another reason as to why a proper celiac disease diagnosis can result in taking six to 10 years. Finally, based on my experience as a Canadian, receiving the diagnosis was only half the battle.

The gastrointestinal specialist that had provided me with an official diagnosis solution was to become a member of the Canadian Celiac Association. The dietitian I met with informed me how to verify gluten-free foods. Unfortunately, just adhering to the Canadian Celiac Association and dietitian’s information was not enough to understand how to adapt and transition into a healthy celiac diet that encompassed all the nutrients I obtained through my initial diet.

After independently changing diets, I began experiencing excruciating muscle spasms and pains; therefore, I went to my general practitioner and the emergency department with my complaints. They referred me to a physiotherapist, chiropractor and prescribed pain killers. The methodologies implemented by these healthcare providers only resulted in providing temporary relief. None of the healthcare providers focused on a healthy nutritional diet that is alluded to in a Canadian food guide that specifically targeted celiac disease individuals.

Furthermore, it is important to highlight that a person with celiac disease results in damaging their small intestine, preventing them from absorbing nutrients, which results in malabsorption. Therefore, celiac patients may be consuming foods and may not be obtaining the full nutrients due to ill-functioning intestines.

I spent at least two to three years continuously changing my diet. Even after receiving a normal biopsy result from my gastrointestinal specialist, I still struggled with weight issues, bloating, swelling, concentration and muscle pains. I had literally given up on my healthcare professionals as their solution was to take pain killers and exercise. Finally, I began researching and independently began taking multivitamins and met up with a naturopath who explained that my body’s fat was not being metabolized properly and suggested perhaps I had an allergy and or sensitivity to a protein known as casein found in all animal milk by-products.

My initial reaction was “no way”; however, as time went by, I realized that the naturopath had been correct, and just after a month of taking dairy out of my diet, my bloating, swelling, concentration and muscle pains had improved drastically. Additionally, as much as I hate to admit it, I adopted a plant-based diet. I am in no way saying I am vegan; however, there is overwhelming research that plant-based diets are the future, and I agree.

Interestingly, at the beginning of my journey, I had become lactose intolerant. Then two and a half years later, I felt perhaps it lacked calcium intake and brought milk back into my diet because of all the muscle aches I had been experiencing. I wish I had known that other foods had calcium sources, for example, spinach, salmon and tuna.

The last bit of information and advice I would like to share is that people diagnosed with celiac disease need to be extra vigilant regarding their daily food intake, especially females. Folate, also known as vitamin B9 under the Canadian legislation, makes folate fortification for gluten-containing flours mandatory. However, the folate fortification of gluten-free flours and processed grains is voluntary in Canada; therefore, placing celiac disease patients at risk of suboptimal folate intake.

In conclusion, I hope that by sharing my struggles and shortcomings, I may provide light at the end of the tunnel for people struggling with their celiac disease diagnosis — important to bear in mind when in doubt, reach out to a naturopath. Stop thinking you are the problem; the health care system is not equipped for autoimmune diseases. Finally, when you fall, pick yourself up and start again.