Our daughter lost almost 20% of her total weight before being diagnosed with Coeliac Disease
Lydia O'Gorman (TinyTumMum)
Last April our daughter Cara turned one year old. At the one-year mark so much was happening. I was back to work after maternity leave, Cara was starting creche, she was passed the weaning stage, we were getting a handle on her solids / nutrition and we were starting to see her take her first steps. Coming into that summer I was full of hope, we were finally getting out of the baby haze and into the normal life of parents of two little ones. But something started to go wrong at the beginning of that summer. Hindsight is a wonderful thing, when I look back now, I can pinpoint the time that things began to deteriorate, but in the moment and in the busyness it was hard to see how bad things were going until we had hit rock bottom.
Cara started to intermittently vomit and have diarrhoea. As I mentioned, she had recently started creche so we originally wondered if she had picked up a gastro bug. She had quite bad reflux as a baby and I wondered if she just had a ‘weak stomach’. As time went on, more food would begin to drop off the menu for Cara. We noticed her losing weight, but put it down to her being more active and all this walking that she was starting to do. Her form was off, she started to become desperately unhappy in creche. This was so difficult to handle, we thought perhaps she was just having some settling-in problems, we tried to work with the creche to put things in place to make her happier but soon we were just dealing with a desperately unhappy and unwell child that we did not recognise. She had spent the first 12+ months of her life so happy.
We visited the GP about the vomiting and were advised to wait it out, perhaps it could be reflux settling down. When we returned for follow up we were advised to go dairy free as Cara was suspected to have a Cows Milk Protein Allergy (CMPA). We started her on oat milk and that is when it all went wrong. It seems so obvious now she has been diagnosed, but drinking Oat Milk multiple times a day made her so sick. She had vomiting and diarrhoea multiple times a day. She became so weak and screamed constantly. We went to the GP again who referred us to A&E, as she was getting dehydrated. The team there deduced that she had a gastro bug, we knew it wasn’t gastro but were given no choice but to be sent away to wait it out. 4 days later, Cara was still vomiting, so we went back to the GP. I could see panic in the GP’s eyes. He had seen the deterioration in Cara, at this stage she had lost almost 2kg which was almost 20% of her total body weight. He advised us to go to another hospital and told us to be firm and make sure she was admitted for testing, there was something seriously wrong. We were already in a state of worry but this really scared us, we thought the worst, we thought that there was a serious medical illness at play. I remember going to A&E that day, and the consultant there asking me if she had a coeliac screening done? She thought she had coeliac disease. I barked back at her “Cara is desperately sick! This isn’t coeliac disease!”
She calmly assured me “Coeliac disease can make you this sick!”
I knew so little about coeliac disease at that point in my life. I had no exposure to it.
Cara was admitted to hospital and we awaited the coeliac screen. They told us to start back on dairy again, that it didn’t look like CMPA. As her vomiting subsided Cara became well enough to go home on a number of food replacement juices and shakes to make her gain some weight. And a couple of days later I got the call from our wonderful Registrar Conor, “Cara has coeliac disease!”
I ask myself now, how did I feel? I felt sad that Cara had coeliac disease but overall I was just so relieved that she did not have a serious medical illness that was being discussed while we were admitted. We could manage coeliac disease, she was going to be ok.
Cara has made such an incredible improvement since we have eliminated gluten from her diet. Her symptoms began to go away one-by-one and she became the bright and happy little lady we knew she had always been.
When your child is first diagnosed with this disease it can be completely overwhelming. Dealing with the immediate diet changes, fear that she will not accept the alternatives.
One big thing that came up for me was the worry about her in terms of social inclusion. I worried about her at creche, at birthday parties, later in life, going to the cinema with her friends. I also beat myself up about feeling like this knowing that there were far greater problems in this world. But they were all valid feelings. and now as we get to grips with the diet and Cara’s health, this is the remaining thing that is left to worry about for the future.
Before Cara’s diagnosis I had no knowledge of coeliac disease. I am quite a laid back parent and don’t like to over analyse and I did not understand that coeliac disease was an autoimmune condition. I thought, like many, that if you had coeliac disease you would feel a bit sick if you ate pasta or bread. I did not know how sick it could make you, I did not even begin to imagine that even a small amount of gluten could do lasting damage and cause weeks worth of illness, and I certainly did not know that even the smallest trace from contamination of surfaces and utensils was enough to make a coeliac sick. I ask myself daily, what would have been the best way to educate someone like me, who had no knowledge of the disease, and I think more exposure in media and more representation. I think up until recently the gluten free options in restaurants and cafes have been limited and as a result I think a lot of coeliacs have chosen just not to bother asking about gluten free options and contamination risks. But we need to ask these questions, because for many in the hospitality industry, they do not see it as a problem because they don’t see the demand. It’s a vicious circle. The onus is on the person with coeliac disease but in reality, the hospitality industry has a lot of work to do to support this population.
It takes up to 14 years or more for people to be diagnosed with coeliac disease. This is because it is not really known how common coeliac disease – with some healthcare professionals thinking it is 1 in 10,000 instead of nearly 1 in 50. It is important for doctors to think about coeliac disease as a possibility much sooner, no matter the age of the patient.
Many times after Cara’s diagnosis I have wondered why she did not have the coeliac screen sooner, we had many GP, and A&E trips before her admission and testing. We were advised to go dairy free before coeliac disease was even considered? I don’t know why this is? Is it that medical professionals are not aware of the actual prevalence? Is it that it is rare to see a young child diagnosed so early? I would urge any parent with similar symptoms in their little one, to push for a coeliac screen. And likewise I would like to highlight this as an issue to the healthcare community. Coeliac disease in infants is very much possible. Since Cara’s diagnosis, I set up Instagram and TikTok pages (@tinytum.mum). During my research of Coeliac disease I could not find much content regarding infants with the disease so I thought it was important to highlight it and the struggles after your child is diagnosed. Since starting the page, I have connected with so many parents of children with the autoimmune condition as well as other Coeliacs. It has been a lifeline. I am learning so much, and hopefully teaching something to others along the way.
