It was a normal day in May 2014 and for some reason, I had grabbed the mail as I had left for work that morning, stuffed it into my bag and forgotten about it until lunchtime.
Lunchtime came and the first letter was “To the parent / guardian of Finley Rhys Gough”. I assumed that it was his next routine diabetes appointment as we had been to the last clinic a week previously for him to have his annual bloods.
I opened the letter and read “Some of Finley’s bloods have tested positive for Coeliac Disease….”. I didn’t get any further than that. I felt sick and without saying a word, picked up my phone and went to outside to ring Andrew.
I don’t remember what I said, I just remember feeling absolutely devastated that he would have to learn to live with ANOTHER life long condition. Andrew, as usual, calmed me down and told me to read the letter properly and to ring the hospital to see what they had to say.
Upon reading the letter fully, I read that they wanted to repeat the tTG blood test in case of a spurious result in the lab. I contacted his team and they told me that his levels had come back over 200 (20 times the normal range) but that I was to do nothing at this point until the second tests came back and they booked him in for the following week.
I was in a daze all afternoon and when I arrived at the school gates and saw his gorgeous little face beaming as he ran towards me, I really struggled to keep it together.
He absolutely hated having the blood tests at the hospital and so when I told him that he needed to go back, he immediately started crying and asking me why? So, I told him that there was a nasty monster called “Gary Gluten” (first name that came into my head) who lived in some foods and if he got into people’s stomachs he could cause them to be ill. The test would tell us whether “Gary” had got into his stomach and if he had, we would have to buy special foods that he couldn’t get into. He seemed to accept this and didn’t mention it for the rest of the day.
In the meantime, I was googling all sorts. The likelihood of a spurious lab test, what a tTG over 200 meant and all the signs and symptoms of Coeliac Disease. The good thing was, he didn’t have any of the most obvious signs outlined on the Coeliac UK website.
Symptoms include diarrhoea and other gut symptoms, faltering growth or a change in growth pattern, irritability and a bloated tummy.
This picture was taken just after the blood tests, where he looks a total picture of health. The only thing I could put my finger on that was different over the preceding months was that his stools had been a pale yellow colour and that he had complained of “achey legs” once or twice which was out of character.
The following week came and the bloods tests were, as usual, an absolute nightmare. I had to sit him on my lap and cuddle him while they had this singing donkey blasting to distract him which Andrew was waving around in his face. Looking back, it must have looked ridiculous but it was the only way to get him to comply.
A week later, the results, again, came back with a tTG over 200. They had also sent a sample to the University of Wales hospital for an IgA EMA test which had come back as “strongly positive” for Coeliac Disease and I was told that his consultant would be in touch.
Although I was gutted that this meant that he did have the condition, I was far more positive due to having a few weeks to come to terms with the possibility. I had ordered personalised stickers from Ebay, some with a thumbs up and some with a monster’s face on. When I got home from work, I told Fin that we had found out that Gary Gluten had found his way into his stomach and that we would need to check all the foods in the cupboard and stick the monster faces on everything that he was hiding in and put thumbs up on all the foods where he wasn’t.
This formed part of a game for him which he enjoyed and we spent a good few hours going through all the cupboards. I then took him to Asda to pick some treats from the Free From aisle and I remember there was nothing like the variation you see today. The only things remotely “treat like” was some dairy free fudge (being rather naive at this point, I didn’t realise normal fudge was gluten free) and some crumpets. We bought these and headed home, with a view to being gluten free from that day on.
The next day, I was contacted by his consultant who told me that whilst his results were enough to be fairly certain of a Coeliac diagnosis, they wanted to be extra sure and were referring him to a Dr Ieuan Davies at the UWH Cardiff to have a duodenal biopsy taken. This procedure would require a general anaesthetic. I lost it at this point and demanded to know why the 3 positive results weren’t enough. I was told that this was the standard practice for our health board and to ring the consultant’s secretary in a few days to find out how long the waiting list was. In the meantime, I was to carry on feeding him gluten as normal.
I felt sick. They expected me to deliberately feed my child something that I knew was harming him. Something that was harming his intestines so badly that the level of anti-bodies in his system were more than twenty times what they should be.
I had two choices.
- Do what they said and wait for the appointment or
- Remove gluten from his diet and risk never having a formal diagnosis.
As much as I wanted to go with option 2, I knew that Coeliac disease could cause other long term issues and that children were supposed to be monitored annually after diagnosis, to ensure the levels of antibodies had dropped. If Fin didn’t receive a formal diagnosis by a clinician, he would never receive the follow up care he needed and so that was no longer an option.
So, I decided to go with Option 3. Feed him 2 pieces of normal bread per day, make the rest of his diet gluten free and do everything in my power to get him diagnosed without a biopsy.
I spent hours googling the various methods of diagnosis across different health boards and came across the BSPGHAN guidelines and in particular, the following guidance.
If tTG raised—and greater than 10×upper limit of normal for assay:
Take further blood sample to check IgA-EMA and determine HLA-DQ2/HLA-DQ8 typing. If EMA+ and patient either DQ2 or DQ8, the diagnosis is confirmed without the need for a duodenal biopsy. If EMA antibody testing is not locally available, a second strongly positive tTG antibody may be substituted and serum saved for later EMA testing.
Knowing that Fin had two tTG tests which were 20 times the upper limit and a positive IgA EMA test, this was all I needed to know and I decided then and there that there was NO WAY I was allowing the biopsy.
All I had to do now, was to get a health professional to agree with me.
I left it three days and rang Ieaun Davies’ secretary. Her phone rang and rang and so I managed to obtain another number for a pool of secretaries who informed me she was on sick leave. She promised to try and find out whether they had received the letter and get back to me. She didn’t.
So I rang her over and over again, until there came a time where I feared she may take out an injunction against me! Eventually, I managed to speak to the secretary who had returned from sick and she promised to review the letter, speak to the consultant and get back to me. It took another few phone calls but eventually she called me back and said they had reviewed the results and whilst they were strongly indicative of Coeliac Disease, it was still hospital policy to perform the biopsy and so they had put him on the waiting list which was approximately six months.
Six months!! Six months of deliberately poisoning my child with something I knew was harming him. There was just no way I was prepared to do it.
I joined a support group and found lots of families who had received a diagnosis without a biopsy which just fuelled my belief that it was totally unnecessary.
I then looked into seeking the advice of a private consultant and contacted the Spire Hospital in Cardiff who made me an appointment with Dr Huw Jenkins, Child Health Consultant for a week later.
The day came, the 17th of June 2014, and I turned up to the appointment with Fin armed with all his test results and the research that I had done, ready for a fight.
He asked me all about his medical history and explained that Coeliac and Type 1 Diabetes went hand in hand. He also told me that he had assisted in drawing up the BSPGHAN guidelines and was very familiar with the recommendations.
He then took one look at both sets of tTG results and the positive EMA and said “There is absolutely no doubt in my mind that this child has Coeliac Disease. He has had all the tests that he needs to confirm it and there is absolutely no need for a biopsy. I will write to his consultant today to confirm my diagnosis and he can go gluten free immediately.”
And I wanted to jump across the desk and hug him!
It was a strange feeling to have my fears confirmed and feel grateful, but this boy of mine had been through enough. He was already getting poked and prodded with needles 8 times a day due to his Type 1 Diabetes and so there was no way that I was putting him through a totally unnecessary procedure, especially one that came with risks of it’s own.
I must have thanked Dr Jenkins at least 20 times and as we walked out of the room and I explained to Fin that the doctor had confirmed that he wouldn’t be able to have any foods with “good ole Gary” in, he looked at me and said “OK Mammy, let’s go shopping!”
And shop we did. There was a Waitrose directly across the road where I let him loose with a basket and his own scanner and he chose anything and everything that he wanted.
And we haven’t really looked back since. Coeliac has become part of our lives as much as Diabetes has. It’s just part of who Fin is and he totally accepts that. He never complains and is convinced that he is a better rugby player because of his gluten free lifestyle!
He has had his bloods done every year since and each of the 4 annual tTG results have been between 3.3 and 3.8 which are classed as negative so we know there is no gluten at all making it’s way into his diet, through cross contamination or otherwise.
Here he is, each year since his diagnosis. Looking healthy and always smiling!
If your child is being investigated for Coeliac and has two tTG results of over 100 (ten times above normal), please know your rights and request the genetic type test for HLA-DQ2/HLA-DQ8 along with an IgA EMA screening. If all of those are positive, then a duodenal biopsy should not be necessary.
Beth
xx
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