Eat it and weep...
This evening we ordered pizza for dinner. Well, Adam ordered it (or, at least, he tried to order it online with my help, but it didn’t work, so I had to phone the order through instead, but it’s the principle of the thing) and he, Ruth and John ate it. But this is probably the last time that Adam will do such a thing.
Last week I took both Adam and Ruth to the hospital to be tested for Coeliac Disease. I’d finally had enough of being fobbed off with being made to feel like a fussy mother whenever I queried why a boy with a good diet and good dental hygiene needs to have 3 extractions and a filling by the age of 6 1/2. So at the end of the Easter holidays I took the pair of them to the GP – I did rather overdo it – “I’m Coeliac, my mother is Coeliac, my father’s brother and sister are both Coeliac, my cousin is Coeliac, another cousin’s son is Coeliac – we have a very strong family history, I’m concerned about Adam and I would like them both tested.” To the GP’s credit he called his secretary straight in and got me to dictate the family history and referred the pair of them to the paediatric gastroenterologist at the local hospital. When we got there last week she was great – she was the first official medical person to agree with me that Adam’s teeth could indeed be linked to being Coeliac, and agreed to test both of them. The blood tests (full blood count, test for active Coeliac Disease and genetic test to see if they carry the appropriate gene) were performed brilliantly – Adam is not a fan of needles, but with one person to ‘do the needle’, one person to hold his arm still, one person to entertain him, me to provide a lap to sit on, and yet another person to entertain Ruth in the waiting room, it all went very smoothly (as it did when Adam and Ruth swapped places).
So, the results. The consultant phoned me this morning. Her opening gambit was that I am “very astute” – Adam is indeed Coeliac and Ruth’s results were normal. I don’t know Ruth’s figures, but on a test where ‘normal’ means 0-6, Adam scored about 87. And it’s not a test that gives false positives. The “gold standard” for Coeliac diagnosis is a biopsy (swallowing a tube so they can have a look and take samples), so he still needs to have that done, and until they do that (which will be under sedation – it’ll be the ‘good drugs’ 
) he needs to keep eating plenty of gluten.
I’ve explained it to him, and he’s fine. A bit sad, which I’m quite glad about – it means that he’s taking it on board, but also quite excited to think that he’s going to be like me – no more “Mummy’s treats” – I’m going to have to start sharing! Ruth is more upset about it – I think a combination of being a bit jealous that he gets to share something with me, and genuinely sad for him that he’s no longer going to be able to share food with her. I’m hoping that her genetic test comes back negative, as if it does we can relax about making sure that her ‘gluten load’ stays high. If the test comes back positive she will still be at risk of developing it later, in which case I would rather she were eating a normal quantity of gluten so that any symptoms aren’t being masked – a small quantity of gluten could be enough to do damage without showing up properly in tests.
And me? – I’m a bit shocked. I thought I’d be fine about it – after all, I’ve been eating gluten-free for over 25 years – it’s not as though I need to reorganise everything. But it’s a very different matter dealing with it for myself and dealing with it for a 6 year old. Fortunately I know that there is a member of staff at his school (one of the loveliest nursery assistants you could ever meet) whose son is also Coeliac, so I know that there is someone there who can act as an advocate for him. And he takes a packed lunch anyway, so we don’t need to try to train the kitchen staff. Mainly though, I know that it’s fine – being a diagnosed Coeliac on a strict gluten-free diet means being able to live a full and active life. BUT it is a total pain in the backside. Eating out, or going on holiday requires a whole lot more planning. And it is tedious having to explain it all again, and again, and again, and yet again. And I hate that my baby boy is condemned to a lifetime of it. I know, I know – it could be so much worse, and that we are incredibly lucky to have so much understanding of it and support within the family, but if I was given a free choice I would choose that he not have it.
ten comments:
sorry hear about Adam’s diagnosis, my best friend has coeliacs I know what a pain it can be when eating out. I wasn’t aware it cause teeth problems – interesting.Well done on getting your GP to listen, all to often they think they know about our/our children’s bodies than we do, but we live them 24/7 so we know when something isn’t quite right even if according them all is fine.
Good luck with the genetic results – let’s hope Ruth is in the clear.
lyndsey-jane () (link) - 08 May '08 - 22:33
I’m so sorry to hear that. But I’m also thinking how good it is for him to have a mother who knows and understands every aspect of life with a chronic disease.Marie () (link) - 09 May '08 - 00:10
I’m sorry to hear about his diagnosis, but good for you for persisting! And you know what? In Toronto, there’s a place where you can call up and get a gf pizza delivered. So, the times, they are a-changin’.Chris () (link) - 09 May '08 - 03:55
I’m sorry! I have a very good friend who has that same issue and she loves to cook and goes to the health food store to get flower that doesnt have that so she can make things special. Honeslty they put so MUCH CRAP in stuff these days you are all probably doing yourselves a favor in the long run (is that niave?? lol). Really, so much fake stuff in everything these days. My sister found out recently her son is allergic to nearly almost all foods. Again, I think its from all the crap in everything!Happy mothers day, you are a WONDERFUL mother :)
pixie () (link) - 09 May '08 - 04:40
Rotten, but at least you can deal with it and he’ll grow up knowing his condition and able to deal with it too. Had a close encounter myself with Conall, hayfever, a persistent cough and my asthma this week. Came away with antibiotics for infected sinuses, caused by the congestion, caused by the hayfever! What a relief, (for everyone no doubt!), but I suddenly realised how much I secretly dread passing it on to them, it is such a pain in the neck at times. You’re a good mum, being so persistent too!Louise () (link) - 09 May '08 - 16:58
Ouch, I’m sort of feeling glad and sorry for you at the same time – at least you know now, rather than being messed around by doctors etc – memories of someone I knew having to do the whole biopsy thing in the middle of her PhD…Daisy () (link) - 09 May '08 - 20:46
Big hugs for all of you; and I don’t think that you “overdid it”...you told it like it is, which can be crucial where health is concerned.rosie () (link) - 10 May '08 - 22:25
Big Hugs, Anne…...Sorry to hear about your little fella, but its also good he can now start to get into the habit/taking responsibility early in his life….even if its only little things….
More big Hugs :)
Love
Sarah xXx
Sarah () (link) - 13 May '08 - 02:14
Well done you for sticking with your gut instinct. Sorry that the news wasn’t exactly what you wanted to hear, but he is very lucky that you fought his corner and will be able to guide him through.alison () (link) - 15 May '08 - 08:37
Sending big hugs to you all – good that your persistence has paid off, and you have a diagnosis, but I’m sorry that the diagnosis is not the one you would all have wished for.((((you))) and (((Adam))) Cxx
Carolyn () (link) - 17 May '08 - 23:54
