Dear Internet. What a lot I’ve got to share with you.

by Veronica on August 31, 2009

in Ehlers Danlos Syndrome, Food-Issues

Dear Internet:

Well now.

A week ago, I was going slowly insane. Amy didn’t listen to a word I said, I was yelling more than any person should have to and I think my head was about this close >< to exploding. Amy was having multiple tantrums an hour, being told no was a TRAGEDY of the HIGHEST ORDER and I was constantly running two steps behind, just trying to stop her hurting herself or destroying things.

It was bad is what I’m saying.

Then I read this post on Mommy is Moody and little things started to add up. Reading about Zoeyjane’s daughter’s food intolerances and her behaviour after she’d accidentally ingested some wheat was like a light going off in my head.

So I quietly eliminated the gluten from her diet one night. I didn’t say anything, I just checked labels and watched her. She was okay. Not fantastic, but okay. I watched her all morning the next day and then let her have noodles for lunch. (Wheat noodles)

The down slide in her behaviour was enormous. Within an hour she was tantruming. She screamed, she hit, she bit. It was awful.

It was enough to convince me.

That night, Nathan and I sat down and discussed things. We talked and talked and decided that as a trial, Amy is going to be gluten free.

Three days later, the difference in her is astounding. Let me say that again, the difference is ASTOUNDING. She hasn’t had a tantrum in three days. No screaming. No throwing herself to the ground screaming like the world is ending. No biting (herself, not me). No hitting. No hurting herself in order to scream louder. Nothing. She’s been lovely.

Before, Amy used to be a little manic. She’d bounce from one activity to the next, never stopping longer than a minute, never able to sit still. She wouldn’t allow you to correct her on anything and if you tried to teach her anything (counting, colours etc) she’d scream at you to SHUSH! until you stopped. She learned things at her own pace DAMMIT and don’t you DARE try and talk to her about anything she didn’t want to listen to.

We own a bookshelf full of children’s books. None of which she’d let me read. After 2 pages, she’d get bored, snatch the book and throw it away. Eventually we stopped trying.

However.

Three days into a gluten free diet and guess what we did yesterday? We sang the alphabet. Together. I read five different books to her. We counted. We talked. She ran up and threw her arms around me, just because she wanted a cuddle. Without screaming. She is happy.

She’s a completely different child.

Before, I don’t think anyone except Nathan and I knew just how bad she was. She’s always been well behaved for her grandparents, even if she was a little manic. Nathan and I spent a lot of time just looking at each other, trying to make it through another day.

Now? We don’t need to do that.

Sure, we have the regular toddler issues of boredom or having to share her toys, but she’s not in constant meltdown.

It’s really fucking nice.

Oh and LOOK. I’ve just discovered that people with Ehlers Danlos Syndrome tend to have food allergies/intolerances. Now really, are we surprised?

Because somehow, with all else that it causes, I’m not.

Ree August 31, 2009 at 10:30 am

I’ve discovered that people with Auto-Immune disorders tend to a) inherit it from someplace and b) pass it along. My mom can’t eat gluten – I have no hair. I’m waiting to see what darling Shortman has gotten…although so far it seems that it’s only a small patch of psoriasis on his neck.

Tanya August 31, 2009 at 11:52 am

That’s FANTASTIC.

Emily started crying, screaming when we ate, not sleeping, sucking her hands, feeding every 2 hours, then we tried her on watered down baby food twice a day and since then she has been content and happy.

Tanya August 31, 2009 at 11:53 am

It makes a lot of difference with a happy child 🙂

Cri August 31, 2009 at 12:22 pm

WONDERFUL! Isn’t it amazing/incredibly infuriating, how simply changing a child’s diet (which, isn’t really very simple, sometimes) does so much for their behaviour among other things? Why aren’t pediatricians and the like telling this to all new parents with small children I wonder?
I’m very glad things are working so well for you guys!

Mrs. C August 31, 2009 at 1:00 pm

WOW!! We discovered Woodjie’s allergies when we had his blood tested. Is that on your list, or are you dealing with a lot of other things right now?

Marie August 31, 2009 at 1:10 pm

Wow. That’s wonderful!

I’ll keep this in mind – that behavior issues might be linked to diet/allergies. Never know if that’ll come in handy some day.

I’m so glad you’ve found some peace and happiness in the middle of everything. Yay. 🙂

Sharon August 31, 2009 at 1:17 pm

Have just put a comment on your Mum’s post about this. Is it wheat or is it gluten? Gluten is in most if not all grains, so would make life quite difficult, and potentially expensive, if you need to eliminate it altogether. Very glad you have found something to calm Amy down though, it will make your life a lot easier if she will sit down and do things with you quietly.

Since I put your blog on reader it doesn’t tell me you’ve posted until the next day apparently so I may take it off the reader and just go back to checking in every day regardless 😉

Veronica August 31, 2009 at 2:00 pm

Mrs C – Yes, we’re looking at having her allergy tested soon.

Sharon – We aren’t sure if it’s gluten or just wheat, so at this stage we’re treating it like it’s gluten. Once we get the allergy testing done (providing it’s conclusive) then we’ll know whether other forms of gluten can be reintroduced and wheat avoided.

Kathy August 31, 2009 at 2:02 pm

Welcome to the world of gluten free living, V – I have a bazillion recipes, tips etc to share if you’re at all interested. Down the track, or if she’s going to have bloodwork done for any other reason, you should get them to check if she has the Coeliac antibodies. As Sharon points out, gluten is in most everything and waaaay harder to avoid than just wheat alone, so if she’s wheat-intolerant as opposed to Coeliac (gluten intolerant), it’s worth knowing that. (Gluten is in wheat, rye, spelt, oats and barley. It isn’t in rice, corn, tapioca, amaranth, sorghum etc, all of which can be used to produce substitute flours, some more successfully than others).

Veronica August 31, 2009 at 2:02 pm

Oh and also, for anyone who is in the US and interested, there is a giveaway happening HERE if you’d like to enter.

Barbara August 31, 2009 at 4:21 pm

Wow. That sounds like a major relief. Well done for working it all out – I don’t think it would ever have occurred to me! Good luck with the allergy testing.

river August 31, 2009 at 5:32 pm

I’m glad you noticed the behaviour thing and worked it out. Peaceful kids are so much easier to get on with. Allergies and stuff don’t run in my family I’ve always said, BUT, I have to limit my milk intake, I don’t like the taste of plain milk so always avoided it, now years later I’ve had a doctor tell me it was my tastebuds way of saying “this isn’t good for you”. I get the bloating and discomfort thing going on, most epecially noticeable with extra creamy products. Then I noticed that my second daughter was hard to manage after drinking coke, but not with pepsi, so we switched without really knowing why, it was the red food colouring in coke. With my son-in-law and grandchildren however it’s a different story. P had allergies from the beginning and the grandchildren have similar problems. I had no idea about such things and didn’t know how to help when grandbaby #1 started crying and crying and crying, all I’d heard was that some babies did this and grew out of it, perhaps it was colic? P’s mum helped a lot by mentioning P’s allergies and suggesting soy milk for E, the change was immediate and remarkable. Thinking back now, it seems that many, many cases of “colic” were probably allergies that no-one yet knew about. The fact that someone noticed and researched and made these things known is a real cause for celebration. I’d suggest allergy testing for Amy and later for Isaac too, but be aware that repeat testing may be worthwhile in later years as children sometimes outgrow their allergies.

Gemisht August 31, 2009 at 5:50 pm

Good news. So glad she has settled – hopefully you are feeling less “ragged” too. You sound it in your post. I may be way off course but if Isaac is unsettled and not sleeping well have you considered going gluten free to see if he sleeps any better? You can tell me to shut up if you want 🙂

tiff August 31, 2009 at 8:23 pm

Gluten is EVIL.
Let me know if you want some excellent preschooler friendly recipes.

tiff August 31, 2009 at 8:24 pm

Also: yes, it can be expensivebut Ivy eats alot of fruit and veg and not so much of the flour based products. It’s not so bad.

taz August 31, 2009 at 8:44 pm

it is amazing how things like that can work so quickly..

thinking of ya..

Cassie August 31, 2009 at 8:58 pm

Put it down to mother’s instinct. Millie had a rash, dr said it was ringworm. No creams helped so I changed to soy milk and it went away. Mums just know these things.

Sharnee August 31, 2009 at 8:59 pm

Oh this is awesome news!!! I’m very happy to hear this!!
Also, I read all your posts but I’m often too busy to comment. I forgot to say that I am glad that Isaac’s tests went well too! xox

Marylin August 31, 2009 at 9:00 pm

Oh that’s brilliant! Long may it continue. 🙂 xx

Jane August 31, 2009 at 10:24 pm

Hi

I posted a comment on your mum’s blog recommending she go look @ Gluten Free Girl’s blog (http://glutenfreegirl.blogspot.com/).

Also letting her know (& now you…) that San Remo make really good gluten free pasta. And that Orgran gluten free flours are good for baking.

Good luck with gluten free – it’s not that difficult if you eat lots of fruit & veg with some protein, but lots of people are stuck in the pasta/pizza/toast for breakfast/sandwiches for lunch mindset which can be really difficult to get out of.

Cheers

Bendy Girl August 31, 2009 at 10:50 pm

I went gluten free about 4 years ago, it’s made the most INCREDIBLE difference. I’ve no idea whether ppl with EDS are truly celiac, but have a suspicion it’s more to do with the stretchy gut issues for us. Good luck with the GF thing, it can be a bit of a pain, but every time I eat gluten I very quickly remember why I shouldn’t!
Lots love, BG x

Jenn FL September 1, 2009 at 2:46 am

The whole family will benefit from the change in diet. It is a little hard if you are a complete soft, fresh, hot from the oven bread addict like myself, but once that stuff is out of your system it is amazing how much better you feel. It did wonders for my migraines!

Xbox4NappyRash September 1, 2009 at 2:51 am

I think I have something similar!

I usually start getting grumpy and having tantrums and ending up on the floor after eating and drinking certain things too.

Magic mushrooms and 2 litre bottles of gin normally.

SusanB September 1, 2009 at 6:03 am

Awesome! I’m so glad you found a solution to give you guys all a break. I have a friend whose son acts completely zombie-like if he gets any soy or dairy, and another whose son pukes for three days straight if he gets even a whiff of dairy. But it’s so satisfying to have a fairly straightforward solution for once! =)

Hyphen Mama September 1, 2009 at 6:10 am

OMG! (do i start all my comments to you with this? i hope not)… YES YES YES!

I’m so glad you can finally put your finger on what makes Amy tick! Isn’t it such a relief?

And then… I’ve correlated the same types of behavior with my kids and red food dye (Red #40 especially), yellow food dye, and SUGAR. The problem? My kids go to their grandparents’ houses and are stuffed full of ice cream and candy and SUGAR! Then my kids come home and melt down. I KNOW what causes the problems, it’s just conveying to other people to NOT feed them this garbage–even if they see it as a special treat!

Also… we had Wynnie’s allergies tested a year or so ago, and blood tests came back completely negative to all sorts of foods. I need to find a different type of testing, because I am positive she’s “sensitive”. NOW you have me thinking I need to cut out gluten also!

Jeanette September 1, 2009 at 6:44 am

that’s fabulous!! Hope it works out.
There are so very many people with gluten intollerances.

Veronica September 1, 2009 at 9:37 am

For everyone that asked, I now suspect it’s all gluten rather than just wheat. I tried Amy on some porridge this morning and saw a huge downslide in her behaviour. 30 minutes after breakfast, she was telling me her tummy hurt. A little while after that, the tantrums begun. She’s curled up in the chair at the moment, looking miserable and randomly bursting into tears.

Gluten free, all the way. Sigh.

Strangely enough, after the porridge, I got a headache and started to feel ‘off’. Makes me wonder if my nausea/headaches have been gluten related all along.

katef September 1, 2009 at 5:51 pm

yay for gluten free improvements!
I have a friend with a two year old who’s was the melt down queen and she NEVER slept.. until they went gluten free. Sometimes it’s a struggle but so so SO worth the effort when you can see the results!

sarah September 1, 2009 at 8:32 pm

perhaps you are allergic to tantrums 😉

Good luck with the gluten free diet. Has it had any impact on her sleeping patterns?

Petra September 2, 2009 at 6:43 am

Ah, the joys of gluten-free living. It’s not that bad though.

And nausea/headaches are what led me to go GF when I did. You should give it a try. It might help. 🙂

witchypoo September 2, 2009 at 9:54 am

I figured she was a whole lot more of a handful than you had shared here. So happy you have a plan!

Cat September 3, 2009 at 1:14 am

Wow, what a difference. Way to go, Detective Mom! Imagine if you were “checked out” and hadn’t connected the dots for another three years? What an incredible gift you’ve given your entire family!

A Free Man September 4, 2009 at 3:04 pm

We had a similar experience with our boy and dairy. A huge change in a matter of days. We’re being very careful with #2. Glad you got this sorted out!

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