Just like all Celiacs are different, so are everyones reactions. There are 200-300 (depending where you read!) documented symptoms relating to Celiac. Very often we talk about what happens if a Celiac eats gluten, but what about contamination, not really so much from eating, but from the environment or contamination somehow in the kitchen?
Yesterday I picked up a grumpy child from school. She told me her tummy had hurt during the day. Knowing what this means I was instantly ‘on my guard’. When she’s been contaminated we walk on eggshells…. We got home, there was some wind. Hey, this is a gluten free blog discussing celiac, so Im just going to say it, there was farting. I call the farts gluten farts. See, there is normal farting and there is contamination farting. The contamination one is sometimes deadly. You smell it in the car and know you got to get home QUICK, because soon the pain and crying could start. OR, like yesterday, its not so much the smell, but the amount of actual air! My tiny 4 and a half year old can do farts that last like 5 seconds! Then she laughs, and blames her brother, or daddy, or the dogs. Then she does another, and another. I guess the bloating has to come out some way. When you are 4 and a half, long loud farts are pretty cool. Not so much when you are a teen I guess!
Then there is the reason we walk on eggshells. Her mood. The smallest thing can make her angry or upset. From angry, we have a very very thin line, if crossed we have a tantrum. This is not a normal tantrum though, this is a gluten tantrum, and in a gluten tantrum no telling off, pleading, time outing, or reasoning will make any. difference. whatsoever. There is a reaction in her brain, its something she can not control. You just have to reel in all those feelings that you yourself feel, bite your tongue and try to be as nice as you possibly can, preferably before the line is crossed and the tantrum comes. You can discipline bad behaviour, but you cant discipline a reaction in the brain! Im not even sure of all the ins and outs of what happens in the brain, but I asked some of my adult Celiac friends who also suffer emotionally when contaminated. Linsey says she feels so emotional she cant help but cry. Once she said she felt so down all she wanted to do was hurl herself out of a window. Mel the same, she called me in tears one day and said, ‘if this is how A feels, then please go easy on her, because I cant stop the tears’! Because how, if an adult feels like that, can we expect a 4 year old to understand whats going on and try to ‘be nicer’? Remember, we are talking about contamination here, not eating something with gluten ‘on purpose’, if A or Linsey or Mel ate something with gluten in it the reaction would be far far worse.
This morning the mood continued. She didn’t want to put her jacket on, she wanted help, then there were endless tears, endless. I know my girl, and most of the time I know which is gluten behaviour and which is not, but its hard to parent a child like A when she’s been contaminated. Its also hard to try to explain to the sibling why sometimes the celiac kid may not get a time out when at other times she would. Sometimes I get it wrong, sometimes I think she’s just being a stubborn 4 year old when in fact she is having a reaction. All you can do is try your best, and dish out extra cuddles as often as possible.
So what happened yesterday? Why was she unwell? She eats only food from home, her table is wiped down by adults before she sits. Who knows, there could have been a crumb somewhere, maybe she held hands with a gluten eating kid that hadn’t washed properly, maybe she stuck her fingers in her mouth. Maybe it was the yogurt that she had eaten the night before, because although usually A’s reactions start within 30 minutes or so, they don’t always. These things happen, they will happen from time to time, all we can do is try as hard as we can to prevent it. There is no blame here. I mentioned it to the teacher this morning, but that was that. No matter how hard you try, sometimes it just happens anyway.
So the next time you see me with my hand wipes cleaning the shopping trolley handle or the table in a cafe or my child’s hands, please, spare me the eye roll and mind your own business, this is what we do, to try our best to keep our girl healthy. And no, a little bit of exposure will NOT make her stronger.
Just a small add here, please remember, that even for a celiac who doesn’t react as strongly as A does, there could still be damage on the inside after being exposed, so when we prepare foods for a Celiac there is no ‘how sensitive are you?’ coming in to the equation. We need to be 100% strict no matter what.
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