Yesterday we received the results of Amy’s blood test results for Coeliacs. It was negative for the antibodies commonly found in people with Coeliacs when they’re eating gluten.
However.
Amy showed all the classic symptoms of a child with Coeliacs when we put her back on gluten. Tummy upsets and pain, bloating, rapid and insane mood swings, and finally, the big one, drastic weight loss.
My little girl? She weighed 1kg less than 8 weeks ago when she was weighed in the Paeds office. This is after a month back on a gluten free diet when she gained back some of what she lost. I suspect she probably lost 2.5kg (5+lbs) over the 3 weeks she was eating gluten. She looked like we hadn’t fed her. I could see every single rib and every single vertebrae. Poor little girl.
Add in the complete loss of impulse control, a severe regression into the realm of not toilet trained at all and the very sad little girl we had, well, we’ll just say that the Paeds are happy to diagnose Coeliacs even though the blood test was negative.
Apparently they’re only 70% accurate anyway. Plus, Amy only spent 3 weeks on gluten when they would have been happier to have her eating it for 6 weeks.
[Side note: 3 weeks of gluten nearly killed us. I’d hate to think of 6 weeks like that.]
At this point in time, they’re not happy to schedule an endoscopy for a definitive answer. The Paediatrician felt that it would be unfair to put Amy [and Nathan and I! we were going to refuse the testing until she was older anyway] through any more gluten, plus, he felt that she really didn’t have the weight to lose if we put her back on gluten. She’s only 5th percentile for weight, despite being 75th percentile for height.
Yeah, you try finding pants to fit her. Sigh.
So the diagnosis is Coeliacs. A life long auto-immune disease that can possibly make her very ill.
Looking on the bright side, Coeliacs is so manageable with a gluten free diet. Don’t feed her gluten and she won’t get sick. Easy!
You might enjoy this website for some recipe ideas: http://justnotdinner.com/
Also, I’m glad they didn’t make you keep Amy on gluten for six weeks. How terrible for her even with the three week trial!
Hugs. Its good and bad all at once.
((Hugs)) Living gluten-free won’t always be easy, but, at least you know.
At least it’s something that can be managed. I am sure you are glad to see her gaining weight back, and I imagine you feel much less stressed in general.
Well, I am very glad you finally have an official answer so you can get back to the business of taking care of her exactly as you thought you should have been! Here’s to easier days ahead with the girlie!
I’m so glad you got a diagnosis, all I can say is thankfully there is so much awareness now about Coeliacs and even Coles has a good range of gluten free. I used to have a client that was not only Coeliac but also Lactose intolerant, allergic to nuts and also Nightshade vegetables (tomatoes, capsicum, potatoes, mushrooms), every restaurant or caterer I ever booked I had to email a list of what he could or couldn’t eat! Surprisingly he was always well catered for and every restaurant was well versed in catering for Coeliacs.
So big hugs xxx
Thank goodness that the doc has taken the sensible approach rather than relying on what the bloods say. It’s pretty clear that Amy needs to steer clear of the gluten. I’m glad things will be only heading in the right direction from now on.
Isn’t it amazing how the tests can be “wrong” as it were. Glad you have a sensible Paed, but that you’re also a sensible Mum. I guess no-one knows their child as well as a mother and I think you did a good job of diagnosing it in the first place. Good luck and happy days with a happier little girls! 🙂 xx
Fair enough. Keep up the good work! 🙂
Glad to hear you have such a sensible paediatrician. Here’s to a happy little gluten-free girl! Not to mention her relieved parents 😉
Did make me laugh about the weight percentile though as my boys always lagged woefully behind on that scale. Still do. Both are around the 6ft mark and neither weighs as much as 10 and a half stone! In fact the elder usually hovers just on 10 stone.
oh dear, kind of mixed news, isn’t it? Still, I usually think the devil you know is better than the one you don’t. (I dont mean Amy LOL)
At least with the right info and diagnosis you can start to help her instead of constantly battling the system for answers.
And how much happier is she going to be with that poison out of her poor little body!
Sorry to hear your answer wasn’t definitive. At least you know going gluten-free solves the issues.
Hi – My son’s immunologist ordered a blood test for the gene that causes coeliac as an alternative to going on a gluten diet – basically if he has the gene, they’ll call it coeliac, if not, they’ll call it severe gluten intolerance. (Of course, he won’t go near a needle, but thats another issue. Sigh.)
Just a thought if you wanted to pursue something definitive. Personally I don’t know that it makes much difference, except that an intolerance can be grown out of and coeliac can’t.
WOW.. I’m so sorry. Or not sorry, now that you know what to do. If you have a sewing machine, elastic pants should be very easy to sew (you get to decide how long the elastic is). Better still, hope she gains weight soon!!
That sucks hon, but I think you already knew. Do any of the shops near you sell kids clothes with the adjustable elastic waist (like maternity clothes)? The Gap and The Children’s Place have them here, and I found they worked really well for Bad when he was smaller. He was 75th for height and 5th for weight for a while too.
Hugs.
I guess at least now it’s in her medical records? *hugs*
Thankfully there are so many gluten free things out there these days that it is so much easier to do then it was 10 years ago.
Oh, sweetie! Glad you have a handle on this though. You are an awesome Mama. By the way, my eldest niece has Celiac and has been living a happy, healthy, active, busy life…gluten-free. She just turned 14 and has been living gluten-free for more than half her life. She’s very careful and reads labels…and has the healthiest diet of anyone I know. I have learned to cook gluten-free for her as well. It really isn’t as hard as I thought it would be. If you want some gluten-free recipes, I can send you some 🙂 XOXO
I’m so glad you got a diagnosis, and you’re such a creative cook I’m sure you’ll find great ways to manage it.
Coeliacs is EVERYWHERE right now. I hope that soon, food manufacturers will take note and stop loading everything with gluten and casein fillers.
I guess it’ll be smooth sailing now until Amy goes to school and the teachers forget and give her snacks with gluten?
As terrible as it is, I have to believe that getting a diagnosis (finally) has to be a huge relief. Knowing what it is and how to manage it will go a long way in helping your daughter.
Well, I’m glad for you that you know. And it’s not an epic tragedy, Coeliacs – bloody annoying, yes, but as someone living reasonably comfortably with it now, it’s probably one of the least dreadful of the genetic illnesses you can get in the Great Gene Mutation Lottery that is life.
I’ll send you some of my recipes for good kid-friendly gf food – what sort of food does Amy like? Also, you might get something out of Shauna James Ahern’s Gluten-Free Girl – although a lot of her recipes are adult-focused, some are good family feeds, and they all look mouthwatering: http://glutenfreegirl.blogspot.com/
If you ever need to vent, you know where I am …
I just came across your blog and have only read this post, but I just had to comment. I’m glad you recieved a diagnosis – it sounds like you have a good MD. A good friend of mine whose daughter had the same symptoms as yours had similar testing results, but the MD wouldn’t diagnose and wouldn’t order further tests. All the best to you and your family.
I have coaliacs, as do my 3 girls. It’s not the disease that causes the problems, it’s the damn gluten! lol
How awful to have to put yourselves through that. I hope your little one is feeling much better and you are all back in happy gluten free land.
I wondered if this might be the case as I’m absolutely convinced there’s something to do with the EDS causing these kinds of issues. Funnily enough my doctors came to the exact same conclusion about biopsy, it’s simply not worth the risk to prove something known to be a problem anyway.
Whatever the tests say I’m so glad you found out this early in Amy’s life that gluten is an issue…although it’s a bit of a pain it’s a far healthier diet anyway…we just don’t need all that dough!
Thanks for the nomination btw Von, thinking of you all, BG Xx
checkin in,,, hang in there and at least you now AGAIN know what is up.
Hugs sweetie. At least there are a shit load of good things that are gluten free now!
Oh and watch for dairy. It is common to react to dairy as well.
Welcome to the world of reading labels again!
I only just read this.
Even though its going to be a pain in the a**, I’ve lived with IBS and just avoided a lot of dairy and you get used to it very quickly.
Still sucks though.
At least it’s manageable! It’s hell reading labels, be glad it’s only food though and not toiletries like Bradley’s allergy
hugs..
a bit of good and bad i guess..
good.. at least some certainty and a sense of “control” that you can manage it.
blessings and prayers from montana
gp
Hope she’ll get better. Think positive about life…
Well, it’s good to have an answer. Now you can move forward.
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