Coeliac Disease, One Year On – What I have learnt

coeilac disase

Around this time last year, my youngest son was diagnosed with coeliac disease. In the year before diagnosis, my son was experiencing rapid weight loss, fatigue, frequent toilet trips and sickness. I didn’t know what was going on, I was scared of the unknown and begged the doctors to do tests.

The Doctors started off by testing for anemia and did a few stool samples. I was advised to keep a food diary as they suspected a milk allergy. I knew deep down this wasn’t the case. The way he had gone from an energetic child to having no energy to walk up the stairs was not as simple as a food allergy.

After weeks of asking, the doctor finally listened to me and tested for coeliac disease.

The antibodies test came back and it was shockingly high. He was diagnosed coeliac by the GP and then we were referred to a specialist pediatric consultant. To diagnose coeliac disease you usually need an endoscopy, however, as Harrison was only 4 years old, the consultant ran a genetic blood test which also came back positive. No endoscopy was needed.

coeliac disease

Once we had the diagnosis we could start to adapt our life to suit Harrison’s needs. As he was anemic, he was put on some liquid iron and we were also referred to a dietician.

The dietician was amazing, he helped us set up a prescription for some of Harrison’s staple foods – bread, pasta and crackers. The prescriptions are free in Wales and it really helps us.

What I have learnt about coeliac disease

 

Sign up to Coeliac UK

Coeliac UK is an independent charity for people living gluten free. They fund critical research into coeliac disease and fight for better availability of gluten free food. I would be lost without the support I have had from Coeliac UK and it only costs around £2 a month. https://www.coeliac.org.uk/home/

 

Gluten free food can be expensive

Firstly, gluten free food can be expensive! My weekly shopping costs went up around £40 at the beginning.

Some price differences:

Chicken nuggets – £3 for 30
Gluten free chicken nuggets £3 for 18

Cheese pizza – £1.50
Gluten free cheese pizza – £3

Biscuits – 38p
Gluten free biscuits – £1.20

Bread – £1
Gluten free bread – £2.80 (half loaf)

Angel slices £1 (8 pack)
Gluten free angel slices – £2.80 (4 pack)

I was shocked at the prices and a bit angry as Harrison has no other choice than to eat gluten free.

Gluten free foods & labels

One of the best things I learnt was to read food labels – There are so many foods that are naturally gluten free.

  • Rice
  • Rice noodles (check label)
  • Fruits
  • Vegetables
  • Meat & poultry
  • Dairy
  • Beans, legumes, and nuts

 

I check the labels on everything I buy. If it has a ‘may contain gluten’ I do not take the risk.

Make your own gluten free breadcrumbs

You don’t need to buy expensive breaded poultry, making it yourself is very simple.

  • Remove the crusts from the bread and chop it into chunks.
  • Using your fingers break the chunks into crumbs or put the bread into a food processor or blender and pulse until an even crumb size is reached.
  • Use crumbs immediately or put them into a re-sealable bag and store in the fridge for a month or the freezer for up to three months. Bring stored breadcrumbs back to room temperature before using.

 

Cross contamination

I didn’t even know this existed when Harrison was first diagnosed. Cross contamination can happen very easily and it only takes a crumb to make Harrison unwell.

We have to be so careful because when someone with coeliac disease eats something with gluten, their body overreacts to the protein and damages their villi, small finger-like projections found along the wall of their small intestine. When the villi are injured, the small intestine can’t properly absorb nutrients from food.

Things I have done to limit cross contamination –

  • Donated our toaster to a charity
  • Bought new oven trays, tins and utensils
  • Keep gluten free food products in separate cupboard
  • Keep frozen gluten free in separate freezer compartment.
  • Separate biscuit tins, cereal and pasta

 

Cross contamination can even occur if someone were to eat gluten containing crisps and then put their hand into a gluten free biscuit tin. This does not apply to Harrison yet, but you can get ‘gluten’d’ if you kiss someone who has drunk something containing gluten, i.e a beer.

What a flare looks like

After a few months of a gluten free diet and iron supplements, Harrison began to put on weight and his energy increased. He was no longer running back and fourth the toilet and he seemed a lot happier in himself.

Then one day we had gone out for a meal and on leaving the restaurant he started to have pain in his tummy, he developed a temperature and began to be sick.  He had accidentally consumed gluten.

Symptoms:

  • Tummy bloating & pain
  • Sickness
  • Feeling hot
  • Feeling tired & sleeping more
  • Diarrhea

 

Flares can last from a few hours to a few days. Harrison usually flares for about 2 days. It is a pain when it happens as he can’t go to school and he looks so weak. A flare can also undo a lot of the hard work we do to keep him gluten free.

So there you have it, a few things I have learnt since we went gluten free.

For more information on coeliac disease please visit – https://www.coeliac.org.uk/home/

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