Sunday, 10 March 2013

Getting the Coeliac diagnosis: I'm in A & E, they need to admit her...

....Not what you want to hear first thing on a Monday morning when you're in a meeting a hundred miles from home!

Initial symptoms:
My 16 month old daughter Alexandra had been becoming increasingly unwell over the past months, we just didn't realise how unwell. She had been cranky, fussy with her food, more tired than usual, however, we had a litany of excuses. She was teething, we'd been on holiday and she was out of her routine, she'd changed rooms at nursery and was getting used to new people. When nursery told me she was staying away from other children and was fussy about contact with adults, I was secretly praying I wasn't going to have an awkward, socially inept child. When I spent a whole night walking the floors trying to comfort her I told myself I was going to have to get stricter with the controlled crying technique- I was obviously not doing a good enough job. It was only when one of our lovely nursery workers pointed out that she had in fact stopped mobilising (she had been cruising) that I realised there was something wrong.

Apparently other children with coeliac's might experience diarrhoea, constipation or vomiting along with weight loss. Indigestion and abdominal pain might also be present. Unfortunately Alex was too young to tell us what was wrong. A full description of symptoms can be found on the NHS website here:

At the doctor's:
I immediately booked a GP appointment only to be told (after a very cursory exam) that 'it's probably a virus'. ( I have since made a complaint about the trainee GP, who palpated my daughter's stomach while she was still in my arms rather than lying on a bed as she didn't want to disturb her, but that's another story).
I booked another GP appointment for a week following that as I wasn't happy with the response but in the mean time had to go to London for the weekend for a work function, leaving Alexandra in the very capable hands of my hubby. During the weekend I had a number of increasingly concerned calls telling me that Alex was very lethargic, had diarrhoea, wasn't drinking. I got my hubby to call NHS direct who said to bring Alex to her GP on Monday morning- important but not too urgent. The next call was on Monday morning from the QMC hospital in Nottingham- Alex was being admitted via A & E, they weren't sure what was wrong and needed to do tests.

A week in the hospital:
When I got to the hospital after the most horrendous train journey of my life I looked at Alexandra with fresh eyes. She was listless, gaunt, with hollowed eyes, had a massive bloated stomach and her ribs and shoulder blades were visible through her skin. She looked like one of the Ethiopian  babies I remembered in charity campaigns from my childhood. In effect, she was starving. Her stomach was no longer able to digest the food she was consuming and she was malnourished. How could we not have noticed that she was fading away?
From the beginning coeliac disease was the differential diagnosis of choice, however my mind was preparing for all of the worse alternatives (leukaemia or cancer being the one that my imagination was honing in on). With coeliac's, you need to remain on a diet that includes gluten in order for the tests to be accurate. The main test used for diagnosis is a simple blood test which checks for a certain type of antibody which is present in people with coeliac's when they have been ingesting gluten. However, we were told that the test can sometimes be negative, when the person does in fact have coeliac's, and additionally, it could be a few weeks until the results are returned, therefore the doctors wanted to perform a biopsy.  This is where a tissue sample is taken from the lining of  intestine to look for signs of the disease. For adults this is done by endoscopy under a local anaesthetic.  Because Alex was so little, they needed to give her a general anaesthetic. After a night of no food or drink (and therefore no sleep), we eventually brought her down to theatre. Although I knew it was a routine procedure, my heart was breaking seeing Alex's little body lying in my arms and feeling her go limp as the anaesthetic was administered. However, the results were back in about 24 hours, and ironically,the blood test results came back a day later, both were positive for coeliacs.

Well, relief was the main feeling (it could be so much worse, we can handle this), followed by, confusion (what the hell has got gluten in it and what hasn't?). A brief visit by a dietician at Alex's bedside didn't help much (there were no paediatric dieticians available, so this lady was sent as she had been diagnosed with the disease herself- she was nice but a bit ditsy and vague to say the least- our experience with dieticians since has been much more positive).  Finally, after a week in hospital, the end of the beginning was over and our journey of living with a gluten-free kid had begun.

Alexandra is now nearly 4. We've learnt, often through trial and error, how to manage her diagnosis in various situations. We're still learning, and still have 'gluten mistakes', but it is alot more manageable than I'd initially feared.

I know through  Coeliac UK ( that there are alot more parents out there who are being introduced to life with a gluten-free kid, so I thought I would start a blog to share some of the experiences, trials and tribulations that we have had.

I am an expert-by-experience rather than a medical expert, so please refer to other websites, or a health professional for any medical information. Please feel free to comment, ask questions or share your own experiences with me though.



  1. Hi Jen,
    Thank you for taking the time to write your blog it has really touched me. My son, Charlie is funnily enough also 16 months and only last week we finally received the diagnosis of coeliacs. He has been been in and out of hospital all month and I have watched my bright baby disappear into a frail, scared, tearful and larthargic little boy. I'm also 8 months pregnant and have had the same conversations with the consultant about our second child's likelihood of having ceoliacs - and received the same patronising 'stop over worrying' answer! For us it is all very new and I feel completely overwhelmed by the road ahead. Charlie has been gluton free for a week now, but is still suffering with a distended tummy, lethargy and vomiting and diarrhoea daily I am told this will take a few weeks to see an improvement, but I wondered what your experience was in how long it took for Alex to get better? Thank you again and best wishes to you and your family. Emily x

    1. Hi Emily,
      I'm sorry you've had such a tough time recently and I hope Charlie starts to pick up soon. Once we started Alex on a G-F diet she seemed brighter within a couple of days. Her stomach took a good few months to go down to normal (I remember because her belly button had popped out and we thought she had an 'outie', when in fact it's an 'inie'!)Her energy started to increase within a week or two, and she was walking and running around (and into everything) within about 2 months- I guess it takes time for the muscles to rebuild and strengthen. We didn't have much diarrhoea before she was diagnosed, and once she went gluten-free, she only vomited if she actually had some gluten (initially,unfortunately, that was fairly often, as we worked out what to look for and where gluten might be 'hidden'!)
      I wouldn't hesitate to keep going back to the consultant if the vomiting and diarrhoea doesn't stop soon though. I know of another child who was also lactose intolerant and that continued to make them sick when the gluten was cut out.
      I know initially it does seem overwhelming, and you spend ages look at the backs of packets and checking ingredients, but you get used to it surprisingly quickly.
      It must be so much more difficult trying to look after a sick child with a big bump and all that goes with it, you have my admiration and empathy!
      I hope all goes well with Charlie's recovery and baby number 2. Please stay in touch if there is anything else you think would be helpful.
      Best wishes,

  2. Thank you, your comments have been of great comfort. We have now seen the dietician who was fab and very helpful and although Charlie is no better physically we have a more realistic expectation and understanding of his recovery and he is gradually starting to eat again albeit small amounts. What I really needed to hear is that his body will recover and he will get better even if it's going to take time. He managed a full day at nursery yesterday which is a big achievement and a welcome break for me! Thank you for accepting my friend request on FB I will watch out for your blog and let you know of Charlie's progress and the news of our new arrival! I am hoping to join a local parents support group in Surrey when life has settled a little. Best wishes, Emily x