Coeliac disease is an auto-immune condition where the immune system reacts to gluten in the foods we eat, causing inflammation in the digestive tract. There is no known cure, and the main treatment is a strict gluten free diet.
I was diagnosed with Coeliac disease after a couple of years of vague symptoms, this is my diagnosis story.
When I was around 12 years old, I began suffering from pain in my shoulders. I regularly suffered with pain in various joints, especially my wrists, and we usually thought I had just injured myself. The shoulder pain was different though, and wouldn’t ease up.
We went to my GP, who did an examination and gave me some pain killers and anti-inflammatory medications, telling us to go back if symptoms didn’t improve.
While the pain killers helped, my symptoms didn’t go away, so we returned and some blood tests were ordered. They found out I was anaemic, and I was given iron tablets. I was also sent for xrays which showed some form of abnormality, but we weren’t told what the abnormality was.
I was eventually sent for physio, and for a while my symptoms did improve a little, but unfortunately this didn’t last. We went back to the doctors and I was anaemic again. This time a locum doctor decided to try and figure out why I was so anaemic, especially after multiple courses of iron supplements.
She ran a blood test for TTG, which is the antibody made by the body when you have coeliac disease. This is what attacks the enzyme in the intestines, causing damage. My levels came back so high that the lab thought it was an error, and we had to repeat the test. When it came back just as high again, I was referred to a paediatric gastroenterologist.
When I met the GI, he was very surprised that I was relatively healthy, he said that my levels of TTG were so high, he expected me to be extremely sick. My only symptoms were the shoulder pain, anaemia and low energy, which we had put down to the anaemia. It turns out my TTG levels were so high the lab actually stopped counting at 250. I was sent for an upper endoscopy with biopsies to confirm the diagnosis.
Strangely, the endoscopy and the biopsies came back normal, which no one was expecting. The GI speculated that possibly they had just biopsied the wrong spot, or, more unlikely, there had been some sort of lab error.
At the time I was tested it was usual to go off the biopsy results, but my blood levels were so extraordinarily high that they decided to go ahead and treat me for coeliac anyway and I started a complete gluten free diet.
I have now been on a gluten free diet longer than I was on a gluten containing one. We now know for absolute certain I have coeliac, as my TTG levels went down drastically once I stopped eating gluten, and I now get severe symptoms if I accidentally consume even a minute level of gluten. It also turned out that I did have more symptoms than we thought, I was just so used to feeling crummy I thought it was normal. Once I switched to the GF diet I had much more energy, a better appetite, I didn’t feel constantly sick in the morning and I was generally just much happier.
If I accidentally get glutened now, I get severe stomach pain, flushing of the face, swelling of the lips, extreme nausea and vomitting, headaches and general muscle and body aches. While at the time of diagnosis my symptoms weren’t that noticeable, I can only imagine how bad they would have got if I wasn’t diagnosed when I was.
If you think you might have coeliac disease or of the symptoms, please speak to your doctor.
Chronic musician 