Our first trip on the road to diagnosis, unsurprisingly, was the GP. No problems with that, a straight referral to our chosen hospital.
On our first appointment, however, we realised things were not going to be as smooth as we hoped. We went in fully clued up on coeliac disease and gluten, I had read everything I could find in the 3 months while waiting for our appointment, from blogs and articles to medical journals. Our paediatrician wasn’t as clued up on coeliac disease, in fact, barely knew anything about it. I understood this, paediatricians have to know massive amounts of childhood illnesses and conditions. What did shock me though was the fact that the doctor refused to look at Boo’s behavioural problems in conjunction with her medical issues stating that we would need to go to a child development centre for behavioural problems.
It felt like a kick in the teeth, we knew her behaviours and her medical issues were linked, but even a medical professional wasn’t willing to help us join the dots. She also refused to read the list we had made and seemed angry we had come so prepared. We wanted to give the doctors a chance to see everything we did, we took pictures, lists of all the issues we were having, even videos of her meltdowns. Once we started to talk the doctor seemed more concerned about our correct use of terminology – most of the appointment seemed to be discussing Boo’s hypoglycemic episodes and that we shouldn’t use the exact term if it hadn’t been diagnosed. After a lot of coaxing the doctor ordered some tests.
Boo had an entire host of blood tests, though luckily they only drew blood once as needles are definitely up there on things Boo does not want to do! Everything was being tested, even things I had not even heard of at the time. The most important result to me was her IgA levels.
IgA tests for the level of the antibody Immunoglobulin A in a persons’ body, This is commonly used for detecting autoimmune diseases like coeliac disease. A normal range was given of 0-7, Boo came back as <0.001, for me a slightly worrying result as I had read about IgA deficiency. Our paediatrician stated that this meant she didn’t have coeliac disease. I was unwilling to accept that and be discharged from care, so after a lot more discussion the doctor reluctantly agreed to give Boo a genetic test to see if she had the HLA-DQ8 or DQ2 genes, the genes commonly associated with coeliac disease and as the doctor put it “then let that be the end of it”. I have to admit feeling slightly smug when I received a letter some 12 weeks later from the doctor stating Boo “actually does have the HLA-DQ8 gene”. We were being sent straight to a further hospital who specialise in Gastroenterology, of course being sent straight away means another 3 months wait for an appointment.
We were sent all the way to Royal Alex Children’s Hospital in Brighton but couldn’t have been happier with our care there. Boo was put on a 3-month gluten-heavy diet, lucky girl….suddenly chicken nuggets, fish & chips and ice cream cones were all back on the menu. We were back and forth to Brighton every month for a check in and agreed that if her IgA levels came back high after the three-month test, she would be admitted for an endoscopy on 2nd Jan 2017. On the morning of 2nd January, I received a phone call to say her levels were too low and she was not being given an endoscopy or diagnosed with coeliac disease. She was diagnosed with Gluten Hypersensitivity. I have to admit I felt crushed, we had come so far and battled so much and that was it, the end of the line, we were discharged from NHS care.