I hadn’t intended to write a blog post for Coeliac Awareness Week (12th -19th May) because in amongst all the bumf for the latest gluten free products I have seen some decent articles explaining exactly what Coeliac Disease is. It is an auto-immune disease caused by the small intestine’s abnormal reaction to gluten. To put it simply, gluten is mistaken for something that shouldn’t be there and the immune cells attack it. However, I noticed the focus was on the digestive related symptoms; stomach pain, bloating, diarrhoea, constipation, indigestion, excess flatulence and vomiting, that untreated Coeliac Disease can cause. These are some of the more common symptoms experienced by the estimated 1 in 100 people in Ireland who have Coeliac Disease, so I can see why putting out information about them is important. Since my symptoms didn’t follow this path I thought I would share my diagnosis story.
It was a combination of ongoing menstrual issues, fatigue and migraine that brought me to my GP. I thought they were linked, but didn’t know how. My GP wasn’t so sure. He prescribed the pill to regulate my period, put the fatigue down to my Rheumatoid Arthritis, even though it was under control at the time, and along with migraine medication suggested I keep a food diary in order to figure out my migraine triggers.
The food diary seemed to suggest that coffee and chocolate were my triggers so I gave them both up. The migraines were less severe, but still too frequent for my liking. Chocolate has since made a comeback in my diet, but now on the rare occasions that I drink coffee it is decaf.
I tried four or five different brands of the pill, but none of them made any difference so my GP referred me to a Gynaecologist. Blood tests showed that I was deficient in iron and vitamin B12 and my thyroid function was slightly on the underactive side. All of which could explain my fatigue. I was prescribed iron supplements and B12 injections. A laparoscopy was done to rule out Poly Cystic Ovaries and Endometriosis and once that was clear I referred to an Endocrinologist.
Appointment after appointment threw up new avenues to try. My thyroid function wasn’t low enough to be the issue in its own right and was deemed a symptom of something else. Of what, they didn’t know. Further tests revealed that my inactive prolactin levels were really high, but my active prolactin levels were normal which confused the doctors. Again, this was deemed a symptom rather than the cause of my symptoms.
By this stage frustration was setting in big time. I was being sent from doctor to doctor and having test after test, yet nobody could tell me what was wrong.
Two years after that first GP visit I presented to him with a migraine that was on its fourth day. I also had eye pain, blurred vision, pins and needles in one side of my face and numbness and weakness in my arm and leg. He sent me to A&E for tests. I spent a week in hospital while they ruled out Transient Ischemic Attacks (mini-strokes), a tumour of the pituitary gland and Multiple Sclerosis. The list of illnesses I didn’t have grew longer, but they still didn’t know what the cause was. I was discharged with an out-patient appointment to see the Endocrinologist again.
That out-patient appointment was to prove vital to my diagnosis. This time while ordering blood tests, the doctor I saw ordered one that I’d never had before. It indicated that I had Coeliac Disease and an endoscopy was ordered to confirm the diagnosis.
After my endoscopy and biopsy I was informed that I did have Coeliac Disease. Although it had taken the best part of two years to diagnose, the amount of damage to my villi indicated that it was something that hit me in adulthood as opposed to being something that was undiagnosed since childhood.
It took a long and windy path, but since being diagnosed and going gluten free my health has improved drastically. My thyroid and inactive prolactin levels have returned to normal, my periods are now sticking to a cycle I can actually keep track of and I only get a migraine when I’ve inadvertently ingested gluten. My iron and B12 deficiencies were caused by the fact that my gut was incapable of absorbing nutrients properly.
While not having an immediate digestive reaction to ingesting gluten can seem like a good thing, because I am not in any physical pain or discomfort, the truth is it isn’t. These last six years have taught me that by the time the migraine appears I have probably been glutened over the course of a few days. This causes more damage to my small intestine than if I had been aware of the problem and able to find the gluten containing culprit sooner. These days the culprit usually turns out to be a cross contamination issue and thankfully these situations are rare.
Coeliac Disease wise; a gluten free diet, blood tests every six months(ish), calcium supplements and the use of iron supplements and B12 injections when needed are keeping my health on the right track.