Sunday, 24 March 2013

How do you know if she's had some gluten?

Sometimes people have not understood the implications of eating gluten for Alexandra. They think being gluten-free is a lifestyle choice, or that a little bit of gluten won't matter too much. We've had waiting staff in restaurants acting like we've asked the earth when we've questioned them about the ingredients and cooking methods used.
There is a simple reason as to why we are so 'fussy'.
When Alex consumes even a small amount of gluten she starts to vomit. She throws up until everything in her stomach has been ejected and then she continues to retch. She brings up bile. If she has a drink of water to clear the taste she throws this up. Alex's body doubles over and heaves with the convulsions that are gripping her stomach. It lasts for hours and she becomes exhausted, but whenever she starts to drift off to sleep another wave of spasms start and she wakes crying and gagging and spewing.
There is nothing at all that I can do except hold her and try to calm her down, curse whatever situation has caused the reaction and pray each time that she starts to snooze that this is the end of the episode. When she wakes after finally getting some rest she is right as rain again and all we have to do is wash the sick out of her hair and pile all of the towels and blankets we have used to try to protect the surroundings (her aim into a basin isn't the best!) into the washing machine.
I know it could be worse- it's not a potentially fatal reaction like a peanut allergy, but it does have long term implications. Coeliac disease is not an allergy, it's an auto-immune disease that affects the lining of the small intestine and prevents it from absorbing food. If a coeliac does not follow a gluten free diet, not only do they experience symptoms in the short term (diarrhoea and vomiting are common)  it can also lead to osteoporosis, anaemia, infertility and bowel cancer (
However it is because I can't bear to see Alex in such pain and because I hate feeling helpless that I continue to be so awkward in restaurants, at parties, when visiting.

Will she grow out of it?
We get asked this alot too. In fact, I don't know where she got the idea but Alex told her daddy recently 'I'll be able to eat it when I'm older' in relation to some cake that she wasn't allowed to have. She was quite distraught (for about 2 minutes!) when we told her that she would always have a special tummy and have to eat gluten-free food.
Her reaction should hopefully get less extreme as she gets older. Even in the few years since she was diagnosed the 'waiting time' between consuming gluten and getting sick has increased. (Although on the downside this can make it harder to work out where the gluten accident happened!) However, it isn't something she'll grow out of and Alex will always have to watch what she eats.

Has my Mummy said I can have it?
A friend pointed out recently that if people didn't know about Alexandra's condition they would think I was a very strict parent. This is because she asks about every morsel that passes her lips when we're out and has perfected a forlorn look when I tell her she can't have a cake or a biscuit. On the plus side it means that, although we will always be on the look out for gluten lurking on the buffet table, Alex is starting to learn how to manage her own condition now.
As soon as she started learning to talk we encouraged Alex to start asking 'has it got gluten in it' when ever we ate out. She had no concept of what gluten was, I'm not sure she understands what it is now, but it meant that she didn't just take whatever food she could see and raised some questions for those around her.
We are lucky that all of our friends and family are on board and are as vigilant as we are about what Alex eats, sometimes stopping her from having something that Alex knows she can have until they've checked with us first- always better to be safe than sorry.
Even with all this protection though, we sometimes have a wake up call. We had an incident a while back when we went to a friend's party. Our friends had catered specifically for Alexandra and we knew most people at the party, so were happy to let her wander- confident that we had taught her to ask before she ate anything. Half way through the event my friend came running towards me with a tearful Alex in one hand and a chocolate brownie in the other. He had seen her eating what he thought was an off limits snack and had swooped in to prevent her from eating more. Alex was very indignant and insistent that she was allowed to eat the cake as she had asked. As it turns out, she had asked an adult if it was ok for her to have the cake and that person had said of course she could (after all it was a party!), unfortunately, they weren't aware of her condition...... Yep, more cleaning up and a reflection on what we could have done differently. We can't watch Alex every minute of the day, and she needs a bit of independence when we're in a safe place, but we want to do every thing we can to protect her from a gluten reaction.  Luckily, Coeliac UK provided a solution. They do wrist bands for children which highlight the fact the they're coeliacs (find them here: ) . Now Alex wears her wrist band for every party or social occasion where there may be people who don't know her background, and, so far, we haven't had a repeat.

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