It took 22 gut-wrenching years until I was finally diagnosed with coeliac disease. And knowing any children I would have had a one in 10 chance of being coeliac too, I was on high alert with my baby girl. I didn’t want Megan to have to endure years of horror and being told it was “just IBS”.
So I was very sensitive to how she was responding when we started weaning her at 6 months old. I repeatedly asked at nursery if her poos were normal, as they seemed pretty damn strange to me. They said they did not have any concerns. They should have – and we later changed nurseries.
Luckily, Megan also went to a childminder one day a week and she raised the subject – the fact Megan would sometimes struggle to do a number two and other times had seven loose poos in a day. She sent her home with concerns about an infection several times, until realising this was just normal for Megan.
My gut feeling was that she had coeliac disease. But it’s hard being a first-time mum and knowing what is “normal” for a baby. Still, in a way, I was dreading the diagnosis.
When we started toilet training Megan when she was around two, it was even more obvious that she was having serious problems. She would take ages to go, scream her pretty little head off and go bright red in the process. Her poo was like rabbit droppings and often streaked with blood and mucous. Poor little mite. It was so distressing for her – and for us, her parents, to witness. Other times, it was so loose that she couldn’t make it to the toilet in time. I knew toilet training was going to be tough – but not this tough.
I was initially told by my GP that Megan needed to be two to have the blood tests needed to check for coeliac disease, although I have since discovered she could have had them earlier. There seems to be some debate on the subject among different surgeries.
As soon as Megan hit two, I took her to the GP and requested the blood tests. Given the family history, they gave us a form to take to the hospital to get one. (She was so young that they do not do them at the doctor’s surgery.) They prescribe some cream to numb their arms before you have the test and there are trained phlebotomists who are used to dealing with taking blood from little ones. I was a little worried on the day and Granny, who’d come along for moral support, was petrified. But Megan just sat there, watched the whole thing and didn’t bat an eyelid. Phew!
Now we had to wait. When the surgery called me a week later and asked me to make an appointment to go in, I already knew what was coming. When the doctor told me her blood tests came back positive, I managed to contain myself until I got out of the surgery, then cried all the way home. And for a good while afterwards.
So many thoughts were running through my mind. Her not being able to join her friends stuffing their faces with fun food at children’s birthday parties. Growing up without takeaways. Not having a pint of beer as a student! And the constant threat of her being made ill by people who are not aware of coeliac disease, cross-contamination and the like.
I felt partly to blame but I didn’t even know I had coeliac disease when she was born – my diagnosis had come shortly afterwards. But the GP could not tell me she definitely had coeliac disease (although she told me the chances were very high) – that needed to be done by a gastroenterologist at hospital. She also said Megan may need an endoscopy.
I was really worried about this as she was so little – just 26 months old. I found the procedure (a camera going down your throat and into your stomach and small bowel) traumatic and did not want her to have to go through this, especially as they need a general anaesthetic for the procedure when they are so young.
I did a lot of reading on good old Coeliac UK’s website and it stated that children do not need to have an endoscopy to confirm the diagnosis, which gave me hope.
There are very few patients who http://appalachianmagazine.com/2017/04/11/back-when-mamaws-would-sweep-their-yards/ on line cialis refuse to go for Lovegra while facing sexual dysfunction. cialis online mastercard http://appalachianmagazine.com/2017/02/21/dea-announces-360-strategy-aimed-at-fighting-the-cycle-of-drug-trafficking-and-violence-in-w-va/ Erection problems (ED) signify that you should not receive sildenafil. They help fight viral viagra pfizer 25mg infection and regulate the body’s immune system. The owner of the dog might levitra mastercard face criminal charges if the dog had shown previous vicious and dangerous behavior, and might be found liable for the victim’s losses in a civil lawsuit. I was supposed to wait three months to see the consultant and continue to give her gluten but it was breaking my heart feeding her stuff that I knew was making her ill. I ended up ringing the consultant’s secretary and telling her how distressing it was. She said: “Can you make it down in an hour?”, so we headed straight to the infirmary.
The consultant told us they try to avoid an endoscopy with young children and said all of her test results (three in total) were off the scale. He said in the future, if we wanted to check if there was any damage to her bowel, we could do one then.
The consultant tried to look at Megan’s bottom but she wouldn’t let him. She was now able to tell us that she had a “sore tummy” and “my bottom hurts”. She had already got a little pile from all the trauma of her potty visits, bless her cotton socks.
We cut out gluten from her diet immediately. I thought it was going to be an absolutely awful process but each time we gave her something new, or told her she couldn’t have gluten, she accepted it immediately. We explained that gluten made her tummy and bottom sore and that she needed special food like Mummy and Aunty Kay (her Godmother is coeliac too – what are the chances?!).
I can honestly say that in the past year, she has cried four times about missing out on “normal” food. The worst was when she had a pizza taken away from her while she was eating it as the yeast had wheat flour in. Who wouldn’t get upset by that?
It took about two weeks for Megan to be noticeably different. Straight away, though, there were no more poo accidents as she could make it to the toilet in time. She stopped complaining of a sore tummy and bottom after a few days and actually started saying “My tummy is better” and “I don’t have a sore bottom anymore”. She now rarely gets constipated and only occasionally has diarrhoea. She is bound to get contaminated with her little friends so there are times where there is the occasional blip – but thankfully that is rare.
I now also realise how little energy she had before going gluten free, often lying down on the sofa for a good part of the day. Pretty much immediately on the new diet she dropped her nap (a year before her little friends) and had loads more energy. She runs around all day, every day now. Her tummy is also much flatter – so what I mistook to be a normal toddler belly was in fact bloating.
It was handy that I had already started working on Safer Eating when Megan was diagnosed – it meant I could take in my gluten advice sheets to nursery and tips on preventing cross-contamination.
I decided to take food into nursery, e.g. gluten-free Yorkshire puddings, sausages, bread, pizza bases, so she could eat fairly similarly to the other kids and wouldn’t feel like the odd one out.
I was surprised at how quickly Megan adapted – within weeks she was telling people when she couldn’t eat something. She is quite happy to have her own special food, in fact I think some of the children at nursery are jealous of what she has.
Now, 11 months on from her diagnosis, my mini coeliac is as clued up as me. She tells people off when they have gluten on their hands, goes to the sink to wash off the Play Doh (it contains wheat too!), role-plays checking labels and knows exactly what foods contain gluten. She was a little confused at nursery when they said bread and pasta were good for you, though!
Luckily, there are so many foods out there now (thank you, free-from manufacturers). I can prepare pretty much whatever Megan wants at home. She will grow up in the Safer Eating world, too, with more and more people being aware of coeliac disease and gluten.
She’s definitely in the right house for us to deal with it.
The big question now is, will my new baby, Megan’s little sister, be coeliac too? Watch this space.