One mum’s worry: Will my second child have coeliac disease too?

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 I had a gorgeous baby girl, Amalie, in March. But on top of all the usual new parent stresses (no sleep, never-ending nappy changes, attempting to get out of the front door), I had the added worry of coeliac disease.

I was very nervous about introducing gluten into Amalie’s diet as we have a strong family history of coeliac disease – both myself and my eldest daughter, Megan, have it. She was two when she was diagnosed. Unlucky for her, children of coeliacs have a one in 10 chance of having it.

I found it hard to find specifics on when to introduce gluten in the weaning process. I was also very aware that Amalie had never had any gluten as I was gluten free when I was pregnant and when I was breastfeeding her.

I scoured the internet and found information from Coeliac UK stating I should wean her as normal and that she should be given gluten for more than one meal a day for six weeks or more before they could test for coeliac disease (via a blood test).

I started weaning Amalie early as she was so interested in food she was literally pinching food off my plate. She was just under five months and could already feed herself. A little food machine.

I chatted to people in coeliac groups on Facebook and found a few parents who had been in the same situation. After much thought, I decided to introduce the other main allergens first (milk, egg, fish, nut, soya) then gluten, so I would know if it was indeed gluten causing a problem.

She weaned much better than Megan did and had normal poos (I never knew they existed after Megan, bless her). Then we started to give her gluten. Immediately, she became clingy and upset – she is normally the smiliest baby ever.

She was also really difficult to settle. She vomited during some of her meals containing gluten. She started to cry out in her sleep. She also started to have mucus in her poo and diarrhoea.

I thought, “Well, maybe it could be because of her jabs or teething or just a general response to weaning.” But coeliac disease was always in the front of my mind.

After I started giving her gluten, she seemed to have griping stomach pains (which she had not had before) and vomited most days. She used to posset occasionally, but never full-blown vomiting.

If the last meal of the day contained gluten, she vomited in her sleep every time. She had started to sleep for a decent amount for months before but three days after I introduced gluten, she began to wake in the night – and it got worse and worse.

She would writhe around in pain during mealtimes, screaming and arching her back. After two weeks, the vomiting and diarrhoea was severe and she was getting a very sore bottom.

She was having screaming fits, which seemed to be due to pain. After less than three weeks on gluten, she had bags under her eyes, looked unwell and just wasn’t herself. The food machine had turned into a broken machine that wouldn’t eat anything or drink her milk.

I felt terrible feeding her things that could be making her ill. It seemed barbaric and made me cry too.

I contacted the dietitians that we consult for Safer Eating and they advised that a blood test could be done earlier than six weeks if the baby was becoming poorly. They also advised to aim for two meals a day with gluten in. I therefore started doing breakfast and lunch so she didn’t vomit during the night.

I rang the gastro department at the hospital to find out how early I could get Amalie tested. The secretary called me back to say if there was gluten in her system and she was showing symptoms, then she could get tested.

So off I went to the GP and asked for the blood test. The GP agreed we should stop gluten immediately after the test as she was reacting so badly. She also referred me to gastroenterology and we are still waiting to hear about an appointment.

I took Amalie for the blood test at the hospital (where they do it for small children) after numbing her arm with some cream. Unfortunately I hadn’t numbed it in the right place, but she is a tough little cookie and was OK.

I didn’t hear anything for a good week so I called the GP surgery and her tests had, surprisingly, come back negative.

So now 2 months later – we play the waiting game. Amalie went gluten free straight after the test and on the same day she started to be more herself. Within a week she was sleeping better and had normal poos again. The diarrhoea and vomiting stopped almost immediately.

My gut feeling is she definitely does have coeliac disease but that she just didn’t have enough gluten in her system. Hopefully, though, I am wrong. Who knows?

Watch this space…

By Karen Woodford, coeliac mum of possibly 2 mini-coeliacs

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    Blucoo77

    My husband is coeliac and my son has had difficulties for some time with soft 💩 and also some leakage of poo. He has been tested for coeliac twice now and has come back as negative. He is now almost 10 and has gone gluten free after trying it for a few weeks in the holidays and feeling much better. I do think he will develop coeliac disease in the future. I read an article (somewhere!) that a person may get a negative test result prior to their bodies producing the antibodies. I wonder if they did a endoscope (not that I’d want my son to have it) if the result would be different

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    Karen

    Oh bless him. With the strong family history and symptoms, do you think it is worth asking for a referral to a gastroenterologist? I had a negative test before I had a positive one and the consultant said that I must have been in the 3% where the test does not work. Had your son had gluten for at least 6 weeks (about 3 meals a day with it in) when he had the tests? Good luck. Glad he is feeling better for now. Karen x

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