Coeliac disease? Gluten?
So we've found out that our little girl has Coeliac Disease and now we need to figure out what that actually is and what we need to do about it.
Our starting point was to join Coeliac UK which is a fantastic charity which supports people with Coeliac disease and is constantly campaigning and researching. We were able to find out a lot of information from them and of course we did our own research and began to understand what we were dealing with.
What is Coeliac disease?
If you have Coeliac disease, it means that your immune system reacts to gluten (found in many foods), mistaking it is a threat to the body and tries to attack it. In doing do, your own immune system damages the lining of the small intestine which means you are no longer able to properly absorb vital nutrients from your food.
Coeliac Disease is an autoimmune disease, it isn't a food allergy or intolerance, so you can not be weaned back onto gluten. If you are diagnosed with Coeliac disease, you must follow a gluten free diet for life.
What is gluten?
Gluten is a protein found in wheat, barley and rye. In baking, it affects the elasticity of dough and largely contributes to the successful texture of products like filo pastry.
There are a number of naturally gluten free grains, for example, rice, quinoa, corn. Oats are often contaminated with gluten during processing and some Coeliacs can't eat Oats.
Symptoms
There are a number of symptoms of Coeliac disease, many of which are digestive related. People with Coeliac disease are often misdiagnosed as having irritable bowel syndrome.
Some of the common symptoms include:
- bloating
- diarrhea
- nausea
- constipation
- tiredness
- mouth ulcers
- hair loss
- anemia.
In children, some of the classic symptoms are:
- "failure to thrive" i.e. not growing in line with their previous growth rates (in our case, our daughter dropped from the 75% line to 25% line in her little red book and I also noticed that her feet didn't grow);
- abdominal distension (as I mentioned in one of my earlier blogs, I could never understand why our daughter always had a "tummy" - she didn't eat processed food, she was the first child so she didn't have a big brother/sister sharing cheeky treats with her :), she didn't eat junk food etc etc and yet her poor tummy was always swollen; it has taken a little while but she has gone completely back to her normal shape now);
- lethargy;
- change of mood and emotional distress.
As a Coeliac, you can also experience Dermatitus Herpetiformis which is the skin manifestation of Coeliac disease. It shows itself as red raised patches often with blisters. Our daughter had this and it was misdiagnosed as various different skin irritations etc. No combination of creams ever got rid of it, it was only when we cut gluten from her diet that her skin returned to normal.
And now...
Looking back it seems so obvious but as they say, hind sight is a wonderful thing! Awareness of the disease is rising but it is still missed in a huge number of cases. According to Coeliac UK, the average time it takes to be diagnosed is 13 years and it is estimated that only 24% of people who have the condition have been diagnosed. If you are reading this now and think that maybe you or a little one could be suffering from Coeliac disease please go to your GP and ask to be tested. I was amazed at how quickly our daughter transformed once we removed gluten from her diet so the quicker you find out, he quicker you will feel sooooo much better.
