Ed’s story: coeliac disease and osteoporosis

Coeliac disease is a condition which affects the part of the bowel called the small intestine. It is an auto-immune disease where the immune system mistakenly attacks its own cells in a reaction to gluten (a protein that is present in wheat, rye and barley). This results in the lining of the small intestine becoming inflamed and a reduced ability to absorb food properly. Coeliac disease can increase the likelihood of developing osteoporosis due to poor absorption of calcium.

25-year-old Ed, who lives in North West London, was diagnosed with coeliac disease at the age of 22.

Signs and symptoms

“I was diagnosed with coeliac disease when I was 22. As coeliac disease can increase your risk of developing osteoporosis, my doctors told me it is common to check patients bone density and they sent me for a DXA scan.

“When the results came back, I was really surprised to discover my bone density was very low and I had osteoporosis.

“I couldn’t understand why I developed osteoporosis so young because I had been told osteoporosis mostly affected older people and even though I had coeliac disease, the doctors told me it was very unlikely I would be affected as I’m young and don’t have any other risk factors.

“I have always tried to keep myself healthy through regular exercise such as walking or running and eating a healthy diet, so receiving the diagnosis made me feel quite worried about breaking a bone and what the future might look like for me.”

Treatment

“I wasn’t put on any medication at the time to treat my osteoporosis because I was told coeliac disease takes about two years to stabilize itself once on a gluten free diet, so the doctors wanted to see how my bone density developed. I have recently had another DXA after reaching the two-year mark and my bone density has stabilised and improved a small amount, but it is still very low.

“My consultant is currently deciding whether to put me on medication to treat my osteoporosis, especially as I have recently been diagnosed with a second autoimmune condition which may need to be treated with long term steroids.”

Steroids can also be a risk factor for osteoporosis.

“I feel lucky I haven’t experienced any fragility fractures, and my daily life is not affected much following diagnosis. I have had to make some lifestyle changes though to best protect myself and I am unable to do certain high risk activities such as ice skating or skiing, and avoid certain bending and twisting movements in Pilates.”

Looking ahead

“I feel like there is not much understanding or representation for people my age with osteoporosis and I want young people to know that they can get it when they are young too. My life’s not dramatically different from anyone else my age, but I do have to be slightly more cautious sometimes with taking part in activities that could lead to broken bones.

“I want people to know osteoporosis isn’t scary and doesn’t mean you’re going to suddenly break in half. I think it’s important, especially for younger people, to be aware of as we can help strengthen our bones and reduce the risk of osteoporosis just by making a few small changes in our lives. I would also encourage anyone with symptoms of coeliac disease to speak to their GP, because early diagnosis reduces the risk of developing osteoporosis.”

To find out more about the link between coeliac disease and osteoporosis, please see our factsheet or contact our Helpline to speak to one of our specialist nurses.