and so it goes

August 24, 2015

family life

Well, our middle boy who has Coeliac Disease has taken us on quite a journey.

A few weeks into his new diet, I put out some syrup for the other boys to have with their pancakes. I wasn’t paying attention, and neither was my middle boy. I heard an “uh oh”. He had poured the syrup over his pancakes and eaten them. Then he read the label which said “contains wheat”. Within an hour he had gone grey, and had dark circles under his eyes. He was violently ill for a week.

He has missed a lot of school since his diagnosis. A microscopic amount of gluten will wipe him out for three days.

I have become paranoid about crumbs. I have accidentally poisoned him by using non-stick cookware that has been used to cook foods containing gluten – sometimes washing them doesn’t remove the gluten. He cannot have any foods where there is any risk that it contains gluten. Anything that says “may contain gluten” or “has been processed with products containing gluten” is automatically excluded. His food technology teacher poisoned him in his first cooking lesson at school, because she used cocoa powder containing wheat.

Being a sociable fella, he gets invited to a lot of birthday parties. I pack all of his food. One lovely Mum made her son a gluten-free birthday cake so my boy could have some too. She showed me the cake and how she had decorated it with melted chocolate and berries on top. On the way home from dropping my boy off, I went into a panic. The chocolate! Some chocolate contains wheat. I rang the Mum, and apologised for sounding like a freaked out mother and for freaking her out, but what was in the chocolate. She retrieved the wrapper from the garbage bin – it had a “may contain” statement on it.

I have been very angry with this disease. To see my child so desperately ill is heartbreaking. I have been going through a process of grief and loss. A lot of emotions. I think that I have been going through this process for him, as he has remained positive throughout. IHe hates the disease too, but after each bout of illness he bounces back. I have overcompensated at times, buying much and many gluten free foods to somehow try to make up for the misery that is this disease.

Not to be outdone, the youngest boy started to get sick. He was sick for 10 days straight. The doctor thought it was just a virus. On the tenth day, I removed gluten from his diet. He started getting better that day and was completely well within two days. After a few days of being well, I reintroduced gluten to his diet, and he got sick again. His blood test was negative for coeliac disease.

The doctor thought my little experiment was just a coincidence. She advised that he go on a gluten challenge. He had to eat a minimum of two slices of bread per day for 6 weeks.  At the three week mark, he started to get sick again. At the four week mark he pleaded with me not to give him any more gluten. Even though he doesn’t like gluten free bread, he said “Mum, even if I beg you to give me gluten bread, never give it to me”.

He has been on the gluten-free diet for about six weeks, and he has been really well. Unfortunately, he will probably never be properly diagnosed.

A nice surprise for us, is that many of the challenges we were having with his behaviour have disappeared on a gluten-free diet. He is now cheerful, co-operative, calm, much more resilient, and has better focus. He is a completely different kid. But now he talks non-stop because he is so joyful! These effects have also flowed through to school. Where he used to struggle writing one sentence, he is now writing a whole page and doing it without complaint.

So, I took to the internet. There were two studies in Germany in 2006 and 2011 which took a sample of children diagnosed with ADHD and tested them for coeliac disease. Fifteen per cent of the children had undiagnosed coeliac disease. Interestingly, when their coeliac disease was treated, their ADHD went away.

Now we have two kids eating gluten-free and costing us a fortune. But when they are well, they are very well, and it is great to see them smiling. Prior to the diagnosis I had no idea of the far-reaching effects of gluten – physically, mentally, and emotionally. The eldest boy is (secretly) doing a happy dance because he tested negative and has no symptoms.

Unfortunately some people don’t understand the seriousness of this disease. They think it’s a lifestyle choice. My in-laws suggested recently that we give my middle boy small amounts of gluten every day so he builds up his immunity. I don’t know how many times I’ve told them that coeliac disease is a chronic disease. The  long-term risk of untreated coeliac disease is diabetes, bowel cancer, osteoporosis, thyroid problems, and other autoimmune diseases. I swear that sometimes people think that I have caused his illness, or I’m making it up. When I stared at them blankly, I think they thought I was a dummy for not having thought of it myself. I don’t know why the doctors and professors didn’t come up with it either.

This is our life now. I say ‘our’ because it does affect all of us. It does require teamwork and lots of communication, and revision of how and why we do things. I keep telling myself, “this is the new normal”.

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About hakea

groupworker, parent educator, therapist, mother of three boys.

View all posts by hakea

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One Comment on “and so it goes”

  1. michaelwatsonvt Says:

    We get it. So frustrating that many people do not understand how difficult this all is. You are being marvelous in the face of so much adversity. I hope things can now calm down for all of you.

    Reply

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