In the little over two weeks that Amy has had to eat gluten the change in my grand daughter’s behaviour has been quite extreme.
We went to visit yesterday and found Vonnie and Nathan cleaning up poo in Amy’s bedroom. Amy had pooed on the carpet and then played in it.There was shit everywhere, on the floor, on the toys, up the wall and all over Amy herself.
After Amy had been cleaned up and allowed out of time-out up she came to snuggle on my lap and we had a bit of a talk about how dogs poo on the ground and people poo in the toilet but I am not sure it sunk in at all. As Amy wasn’t really there and had difficulty making eye contact with me. *sigh*
Later when we were reading a book together and talking about the pictures in the book, it was also glaringly obvious that Amy’s speech patterns have regressed as well. Half of her sentences were a nonsensical babble.
If I didn’t know that gluten was causing these issues I would be inclined to think that Amy was destined for a life on ADHD medication and/or a classification of being on the Autistic spectrum.
I know that last sentence is a huge call BUT I cannot stress enough how drastically different Amy is. She is all over the shop the poor little darling.
Amy has lost her ability to concentrate for longer than a few seconds. She has a rash on her face and her back. Her speech has regressed. She doesn’t listen and wont make eye contact.She has stopped using the toilet. Her sleep pattens have changed and the tantrums and meltdowns are back with a vengeance.
As I left Veronica yesterday I hugged my daughter and we both said the same thing, “Six more days.” Six more days to go and then the evil gluten can be eliminated from Amy’s diet again and we will have our little girl back. I am looking forward to hearing some happiness in my daughter’s voice again as well, because I am sure that Veronica is only just hanging on by her fingernails.
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So awful – is this the reintrduction so she can be officially ‘diagnosed’?
Hang in there – once the piece of paper is in you hands you can go about fixing the cause of the problem – hugs!
@ Tinkingbell, it takes three weeks for the gluten to damage her small intestine enough so that coeliacs can be diagnosed with a blood test. And the reason that Vonnie is putting Amy and herself through this nightmare is that untreated coeliacs can cause cancer.
6 more days, only 6 more days…
So crazy! They need a better blood test, then!!
I know here in Victoria the Coeliac Society won’t let people become members until they have a written diagnosis from their doctor as proof.
It’s sad and crazy that parents have to do this to enable the test !
Poor Amy. Veronica & Nathan too.
Six more days, Kim.
Oh my god, sometimes doctors still live in the middle ages, don’t they? Horribly horrible!!
Sending many hugs and prayers.
Only six days, whew. What a nightmare this must be for Amy, who really doesn’t understand why she has to feel like this. It’s hard on all of you adults too, but at least you know why. It will be so great after it’s over to have the “real” Amy back.
It’s crazy. I never would have thought of eliminating gluten.
Its a shame they can’t come up with a faster test. Its barbaric actually! All just to tell you what you have already figured out. I can only imagine how frustrating this must be. I am sending calming energy your way and for V and Amy.
Thinking of you all, BG Xx
Damn, that sounds awful. Six more days. Not much time but forever and a day as well.
Good luck and love to all of you over there.
Nearly there. Poor Amy it must be confusing for her. Distressing and stressful for all concerned. My thoughts are very much with you all.
Hope this week goes really quickly for everyone’s sake, at least then Amy can go gluten free again without waiting for the diagnosis.
Six more days… six more days!!
I’m sending all my energy to V & the family.
Feeling for all of you.
Knowing it is a hard thing to go through an even harder thing to diagnose.
Hoping Amy and V feel better soon.
It’s not easy during the testing stages for food intolerances and allergies. Nearly over though, nearly over.
ouch!
I’m continually astonished at the effects gluten have on the human body. What you describe about Amy’s behavior make me wonder if this isn’t my little guy’s problem as well.
Augh, gluten can be such poison! I have Celiac Disease too (we Americans spell it so much less elegantly) and the havoc it wreaks on mah delicate flower of a digestive system is NO fun. I’m closing in on a year since my diagnosis and the change in my health since eliminating it has been AWESOME. I am pulling for you and your family. It will be so much better when she gets the positive diagnosis. And, there are more and more places around that sell GF food that actually tastes good.
so glad Amy is off the gluten now..
i have been reading your blog Kimme..
just been busy..
will try and comment more often..
thinking of ya.. 🙂
That is awful that they are putting her through this. Why aren’t they just doing the simple antibody blood tests for coeliac disease? Don’t they have these blood tests available over there?
Right this is it!!! I am now really annoyed. It could well be a huge problem matt.
Take a look at the Coeliac society Feb 2010 Shopping List of endorsed products located on this page http://www.coeliac.org.au/endorse.html
Here is the link if u cant find it!!
http://www.coeliacsociety.com.au/downloads/Endorse%20-%20Shopping%20List%20Feb%202010.pdf
on one of the latter pages it says this:
Takeaways:
Dominos
They are not just endorsing the gluten free bases, but rather their so called “gluten free” pizzas that MAY CONTAIN TRACES OF GLUTEN!
This is really frustrating! I thought the coeliac society was better than to be sucked in like that. There are certainly other businesses around that use ENDORSED gluten free bases that I would expect do a better job than Dominos at preventing cross contamination. So I cant even rely on THEM! This is REALLY frustrating! :-/
Veronica, your initial comment about how the coeliac society’s research was flawed does hold some great truth! I AM SICK OF THIS SO CALLED “SUPPORT GROUP” twisting things just to make people happy. ESPECIALLY when they say the don’t endorse restaurants on the aforementioned webpage!
How can I trust the Coeliac Society in other matters then? let me know?
I don’t know what I’ll do. some help?
i myself am not a supporter of the coeliac society of Australia – the reason is because of too many twists and flaws. their recommendation of wheat-derived glucose syrup, etc. (which DOES in fact have trace amounts of gluten in it) being gluten-free is totally different to what is concluded on the Codex Australia site [which states that Wheat derived glucose and caramel colouring are UNLIKELY to have an effect on the individual]. I react to wheat glucose syrup, corn syrup and glucose from other sources is fine.
On another note, the Coeliac Society clearly states on their ingredient listing booklet that they are NOT responsible for how the guide is used or misused in determining which products are gluten free.
@Kelly, the business with the coeliac society allowing traces of gluten to be labelled as GLUTEN FREE has not occurred yet. There is only talk of it. Basically the idea is to allow products which test four times greater than 5ppm (Parts Per Million) gluten to be labeled “GLUTEN FREE” (provided that it is below 20ppm – where food products today have to declare a gluten containing grain at this level and are currently classified as “NOT gluten free”). This is because aus has the strictest labelling regulations atm and it is limiting what can come in from overseas that is labelled gluten free at 20ppm as this is the standard for gluten free products in most places outside AUS and NZ. this is my third reason for not supporting the coeliac society. there is no knowledge of what side effects there could be at this level.
My fourth reason for not supporting the coeliac society is due to the fact that the damn coeliac society (esp. victoria) makes you get tested for CD before you can subscribe to them. HOW RIDICULOUS. getting tested for CD means that you have to re-introduce gluten for a month or something… This could be fatal for someone extremely sensitive!! Who does the coeliac society think they are!!!!
Finally (i guess you’re having enough of my rant now), the Coeliac Society is a financial burden in itself for individuals following a gluten free diet. IM SERIOUS!!! I would have wasted hundreds of dollars now had I subscribed after going gluten free. From what I hear their Coles discount cards are a complete Rip-OFF!
THE COELIAC SOCIETY OF AUSTRALIA, in my opinion, IS A COMPLETE JOKE *snort, snort*
tell me what you think!!