Our Celiac Disease Story

Our Celiac Disease Story

Happy celiac disease awareness month! My focus this month will be on chatting about our personal story and the importance of screening and proper diagnosis.

This year marks a special anniversary. Five years ago my husband was diagnosed with celiac disease. Five years ago we finally got an answer to why he had been so sick. And five years marks the start of healing and our journey into the gluten free and celiac world.

Being diagnosed with an autoimmune disease, like celiac disease, really is the start of a journey. From the outside it appears to be a simple disease to manage, just don’t eat gluten! But those with the disease will tell you, it’s far from easy. The mental, social and emotional burden of this disease can be quite intense, especially at the beginning.

Sharing stories is so important.

Sharing your journey with others raises awareness, normalizes your feelings, promotes personal healing and connects you to other people that walk a similar path.

registered dietitian, celiac disease, gluten free

Warning signs of lurking celiac

Soon after our honeymoon, my husband was diagnosed with celiac disease. It was unexpected and turned our world upside down.

It shouldn’t have been a surprise really. He had textbook symptoms of celiac disease.

Weight loss, diarrhea, terrible gas, abdominal pain, fatigue, trouble concentrating and sleeping. He had other signs that something was wrong like chronic leg cramps at night and exercising vigorously but feeling more and more weak. He relied on caffeine to get through the day, from coffee so strong you could stick a spoon straight up in it!

In the past we had just shrugged the symptoms off or blamed them on different excuses. The usual …”I didn’t get enough sleep”, “I’ve always had a high metabolism”, “I’m just really stressed at work”, “I just have a sensitive stomach”.

Ever since we met, he always had a distended belly and super thin limbs. It reminded me of the pictures in my nutrition textbooks of malnourished kids. Weird. “But that couldn’t be”, I thought, “because he eats more food than anyone I’ve ever seen!” He was also infamous in his family for his bathroom habits and smells. It was terrible!

After our wedding we went on a honeymoon to Jamaica! We stayed at a lovely resort.

Good food, beer, beautiful beach, scenery…but my husband didn’t enjoy it.

We had to be near our room most of the vacation. A bike trip down Blue Mountain, where the famous Jamaican coffee comes from, was particularly unpleasant. The majority of time he was looking for the next bathroom. Looking back on the pictures from that excursion, he was obviously forcing a smile through considerable discomfort.

celiac disease, gluten free, registered dietitian, gluten intolerance, gluten sensitivity, clear focus nutrition

At the end of the trip he looked me in the eye and said “what’s wrong with me? Why can’t I even enjoy a vacation?”.

That was his tolerance threshold. He needed an answer. When we got back, he made a doctor’s appointment

His first round of blood work revealed elevated liver enzymes (uh oh) and that he was very anemic (yikes). In a man, anemia is unusual. Anemia is actually the second most common symptom leading to a celiac diagnosis after diarrhea and is present in 32% of people at diagnosis (1).

Along with the fact that he was very thin, had trouble sleeping and concentrating, had significant abdominal symptoms…his doctor had the good sense to order another round of blood work.  This time he included a celiac screen with IgA-TTG. (Check out the Canadian Celiac Association for more information and screening and diagnosis)

We both remember sitting in the office looking at the results.

The celiac specific antibody level was so high it was unreadable.

Because his liver enzymes were elevated, he was sent for a CT scan of his abdomen. The results of that scan showed two spots on his liver and a brick sized tumour which the doctor’s diagnosed as cancer in the space around his large intestine. Everything moved really fast from there and we found ourselves suddenly transplanted from our home to the city eight hours away and facing stressful doctor visits. He had an MRI for his liver which turned out clear and there was no way to biopsy the tumour because the position would mean piercing the colon. So we had to wait on surgery to remove it. He underwent a full laparotomy and exploratory surgery to remove the tumour, only to find out to everyone’s shock that there was no tumour.  What the CT scan showed, we learned after the fact, was actually a loop of his small intestine that was uncontrasted with the dye and looked so distended and inflamed that it appeared to be a tumour. Meaning his intestines were so damaged and his symptoms were so severe, it looked like he had cancer.

It took a while for us all to heal from the emotional trauma of that situation.  He went from status quo to being diagnosed with celiac disease, a tumour and having an unnecessary surgery all within 10 days. Unfortunately his celiac disease diagnosis was pushed aside during this medical crisis and he didn’t end up having a gastroscopy until a year post diagnosis. His gastroenterologist at the time, had no doubts through that he had celiac disease based on his quite definitive blood work and clear symptoms. The gold standard for diagnosing celiac disease, however, is an intestinal biopsy where the lining of the gut is analyzed under a microscope.

registered dietitian, clear focus nutrition, celiac disease, gluten free

Finally we were able to focus on getting a handle on eating gluten free. As a registered dietitian, I thought it would be easy to navigate the gluten free world. Just eat gluten free! How hard could it be?

I was wrong. It was hard. He felt even sicker before he felt better.

Learning a whole new way of eating was really challenging and stressful. Coming to the reality that this was going to be a life long commitment was also quite heavy. However, what was even more challenging was that eating gluten free was just one part of the story in healing and becoming symptom free.

The rocky road: The first year post celiac diagnosis

It took well OVER A YEAR for my husband to heal and finally feel well. During the first year on our journey we really saw life with a new perspective. Life is precious. Make every day count.

So we made a dramatic change and moved across the country, from Manitoba to British Columbia, for a new adventure. After quitting our jobs, we went on a long vacation to New Zealand, the Cook Islands and New York City, before settling into our new place and jobs.

While we planned for these adventures we didn’t plan for the setbacks he would have.

celiac disease, gluten free, registered dietitian, NCGS

We designed our vacation to be safe around food. We rented a camper van to have a portable kitchen as we trekked across New Zealand. In the Cook Islands, we found a cabin on the ocean with a kitchen where we could do the same. However, halfway into the trip we splurged on a meal at a restaurant claiming to be celiac friendly. That evening, he became extremely sick. He was in so much pain that night, it was terrifying. What’s worse is that it kept recurring and made for a very stressful end to our trip and expensive doctor visit (thank goodness for travel insurance!).

Over the next couple of months he had recurrent painful “attacks” including one in a grocery store that resulted in an ambulance ride, a trip to the ER, an X-ray, an EKG and blood work. Yet still no answers or solutions. Life felt so unpredictable. It was a scary time.

He was really sick. 

We worried he wouldn’t be able to work once we moved. When we asked for answers to his severe abdominal pain flare ups and other symptoms, his doctor’s kept shrugging and saying “I’m not sure what we can do, just don’t eat gluten”.

We had to figure things out on our own.

Healing came through a holistic approach.  It was more than just going gluten free. We paid strict attention to celiac safe foods, avoided eating out for a few months and cooked mostly whole foods. We focused on highly nourishing, non irritating foods. We used some strategies to correct nutrient deficiencies (iron and vitamin D in particular), supported gut healing and discovered some underlying food intolerance. And lastly he worked on calming the mind through gentle exercise like an intentional yoga practice, mindfulness techniques and breathing.

Stress was a big factor. 

His symptoms started to settle down. Over the following year he experienced less and less pain, slowly gained some needed weight, filled out with muscle, found a spring in his step, enjoyed a clear mind and started feeling well!

celiac disease, gluten free, registered dietitian

Lessons from our story.

Trust your gut when you feel something is wrong. Push for answers if you aren’t satisfied with the response you get. Try a different doctor, ask for a referral. Do your own research on management of celiac disease to help advocate your own care.

Be patient. Healing comes with time and treating your body well. Healing time varies depending on how damaged your gut was prior to diagnosis, age and sex. It takes on average 2 years for total gut healing (2).

Learning to eat a whole new way takes time and effort. After a while it will become comfortable and easy. Many things can be made gluten free and taste just as great. You just need the courage to try!

Encourage people to get screened if they have signs or symptoms BEFORE going gluten free. The tests only work if gluten is being eaten.  Once people feel better they often will not want to go back on gluten to get screened or diagnosed.  The sooner a diagnosis can happen the easier and faster the healing will be. Talk to your immediate family members about being screened as they are at a 15 to 25 percent higher risk than the general public as it’s a genetic disease (1). Remind them that it can occur at anytime in life, even if they screen negative now. For more on what celiac disease is, read this.

Tap into support in whatever way works for you. We didn’t do this early enough. There is wonderful support through the Canadian Celiac Association. In the United States, check out celiac.org. Facebook groups like the CCA Facebook group, can be a wonderful way for people to share joys, struggles, questions, food products and recipes.

For more personalized support and advice – check out how I can help you become symptom free. I offer virtual counselling to clients across Canada.

celiac disease, gluten free, registered dietitian, clear focus nutrition, NCGS

References:

  1. Leonard, M., M., Sapone, A., Catassi, C., Fasano, A. (2017). Celiac Disease and Nonceliac Gluten Sensitivity: A Review. JAMA 318(7), 647-656.
  2. Freeman, H. J. (2017). Dietary compliance in celiac disease. World Journal of Gastroenterology 23(15), 2635-2639. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5403742/
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This Post Has One Comment

  1. Wow Amy and Husband. Thank you for sharing this incredible and scary journey to answers and eventual healing. Finding the “name” for why one is sick is the first step on your long journey to healing. What a difference in body features your husband has from pre to post celiac diagnose and gluten free.

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