Does My Child Have Coeliac Disease?

coeliac disease

I am sharing this post to highlight some of the symptoms of coeliac disease in children.

After my four year old son was diagnosed, I joined some Facebook groups for coeliac disease. These groups have offered me a great deal of support, however, I have noticed that some people are asking about symptoms in a children.

Please note, I am not a medical professional, I am just a mum. If you suspect your child has coeliac disease, please talk to your doctor.

Harrison has always been a small child, he was 6lb.5 when born and he remained on the 9th percentile. He was a healthy baby, however, after looking over his red book (personal child health record) I have noticed the health visitor has made comments on his weight loss after periods of ill health. She also mentions his dry skin.

The weight loss due to his upset tummy starts around the time I started to wean him, also, around this time, he starts to develop an eczema type rash. The health visitor notes that she has advised Harrison needs some hydrocortisone cream. She also notes that the rash is on his face as well as his body.

To be honest, I didn’t think anything of this and I continued to wean. As the months went by I did start to worry, why was my baby so little! The doctors and health visitors would reassure me by saying he was healthy. They would often say that because I am a small women, I have had a small baby!

I put the thought to the back of my mind. Everything was normal and I shouldn’t worry.

When Harrison was two years old we spent a lot of time at playgroups, he would often get an upset tummy but I thought that he was just picking up germs. He was still wearing 12 month old baby clothing. Something was not right! His older brother was a big kid, why was he so little?

At three years old, Harrison began to get really tired. He would fall asleep after doing simple things. He was always hungry and constantly eating. Friends and family would mention his appetite to me, where did he put all the food he ate!? He was still in 2 year old clothing.

coeliac disease

I mentioned his weight to the health visitor again. I said I was concerned he was not growing and that he had loose stools. Nothing was done.

At four years old, Harrison was extremely tired. Going to nursery was difficult for him. I noticed that his arms and legs were getting very thin, his ribs were protruding and he started to get dark circles under his eyes. His tummy would often bloat and he had quite a bit of flatulence. I went to the GP to be told he had irritable bowl syndrome.

coeliac disease

He was back and fourth the toilet a lot, and sometimes he would soil himself as he couldn’t make it in time. Something had to be done, he was clearly not well. I decided to monitor his stools (don’t you just love being a mum!) I started a food diary as my first suspicion was that he had an allergy to something.

I started by excluding dairy from his diet. I did this for two weeks. I would make a note of what he had eaten and what his stools looked like. Although he showed no improvement after two weeks, the stool monitoring was highlighting something was not right.

I know it sounds disgusting but if you think your child has coeliac disease, you need to know. Harrisons stools were very pale and loose, I noticed that some days the stools contained undigested food. He did have constipation on and off but he mostly had loose stools, and he would go to toilet up to 4 times a day. He always seemed to have an upset tummy.

The final straw for me was when we went on holiday (March 2019) Harrison spent majority of the holiday on the toilet, whatever was wrong with him, was affecting his life! I phoned the doctors as soon as we got home.

The doctor again tried to say it was IBS. I demanded he be referred to paediatrics. The doctor wanted to check his stools. If something was wrong it should show up in the test. I agreed to the test.

A week later the doctors surgery phoned me and asked me to come in. Harrison showed raised calprotectin levels – Calprotectin is a protein biomarker that is present in the faeces when intestinal inflammation occurs. The Doctor referred us to paediatrics. A week later I received a phone call from the paediatrician, he wanted to see Harrison the following day. He said he wanted to run some blood tests.

I started to panic, why did he want to see Harrison urgently!? My thoughts started to run away, I was thinking the worse. I will admit, I lost a fair amount of sleep with worry.

The blood test was nowhere near as bad as I’d thought it would be. At the children’s hospital, Harrison had a gel applied to numb his skin roughly 45 minutes before the blood test. The gel worked wonders and he didn’t even flinch!

coeliac disease

About a week later we had the news we had been expecting. The blood test confirmed that Harrison had coeliac disease. Another test was run shortly after and this also confirmed it. I was also informed that Harrison has anaemia and he is now taking iron three times a day.

We are now a month into a gluten free diet, and to be honest, he is still really unwell. I have been made aware that it could take a few months before we will see any changes, so I am hopeful.

Update to follow.

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