Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Gluten-free casein-free diet

GFCF Dilemma

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We have been (kind of) doing the GFCF diet for six months now.  We’re actually very strict about no gluten or dairy products, but the GFCF diet also eliminates soy, and we don’t do that.  Both the kids patch tested allergic to wheat, milk, and eggs.  Pudding also tested allergic or intolerant to several other foods, which have been successfully reintroduced back into her diet, with the exception of peanut and cashew nuts which we won’t do for a while.  At the last appointment with the dietitian, she asked how I felt about reintroducing the rest of the foods.  And I didn’t, and still don’t know how I feel about it.

When we first removed gluten, Pudding immediately slept better.  But over time, her sleep issues have returned, though they aren’t as bad as before.  And she has made improvements with her development over the last 6 months, but they have been gradual rather than dramatic, and I honestly can’t say that those changes are due to the GFCF diet, or her school program or other therapies.  I just don’t know.  When I’ve read other parental accounts of using the diet, they have always claimed dramatic differences.  The GFCF diet is supposed to be followed for at least a year, so part of me thinks I should keep going.  The more skeptical side of me says that if we haven’t seen sufficient changes on six months, it is not valid as a therapy.

I haven’t thought about stopping the GFCF diet, because it is fairly easy for us to follow.  Now that we have reintroduced rice and potatoes, the range of foods she can eat has increased greatly.  We can go out for a meal again- something that Pudding loves to do (I know, she is atypically atypical in that respect).  If we reintroduced the other foods, it would be even easier.  Pudding could go back to eating her beloved pepperoni pizza and ice cream.  She could play with regular play-doh, and share snacks at school.  I wouldn’t be so concerned about her eating something when she is out of my care.  Our food budget would be at least halved, which is no small thing at the moment.  She could eat a real birthday cake without me having to figure out how to get all the ingredients while away from home.

And then I go back to remembering how her back looked when I removed the skin patches.  How I thought she had no problems with food, and then saw the angry red wheals.  How even after the 5 days of observation, the marks for wheat and milk remained.  They didn’t go away until 3 weeks later.  I remember thinking that if this is what happened to her skin on the outside, what on earth had years of eating these foods done inside?  The scariest thought of all: was she in pain all this time, and unable to tell me?

And with that, it seems certain that we’ll carry on.  But if following the GFCF diet can be tough here in the land of Whole Foods and Trader Joes, how much more difficult will it be overseas?  And right now we have a pediatric allergy specialist, dietitian, and GI consultant.  If I’m going to reintroduce those foods, I want that team at close hand.  We leave here next summer, so a decision needs to be made fairly promptly.

I would really appreciate it if anyone with experience of the GFCF diet could tell me what convinces you to keep doing it.  Or if you tried, but stopped, you could tell me about that too.  Even if you’re shy about leaving comments for everyone to see, you can drop me an email.  I really need your help on this one.  I’m at a loss.  We see the allergy doctor on Friday, and need to make some kind of decision for both kids.  I’m just not convinced either way.

Autism Miles

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A Gif Animation of a Speedometer.

Image via Wikipedia

Here is my week in Autism Miles:

Monday Collected Pudding from school and took her to speech therapy and then home.  32 miles.

Tuesday Trip to expensive organic grocery store for GFCF bread and yoghurt.  4 miles.

Wednesday Occupational Therapist office accepted by our insurance round trip.  42 miles.

Thursday Sibling Study round trip.  In morning rush hour traffic with a hurty back.  Yuck.  110 miles.

Friday Pudding’s field trip.  19 miles.

Saturday Dropping off Pudding at S.M.I.L.E. and collecting her.  61 miles

Sunday TBD, potential day trip to Philly.


At least 268 miles this week in the name of autism.  I was thinking about this as I drove to and from Cubby’s sibling study.  I spend more time on the road than your average trucker.  One bonus though, it appears that Cubby’s “special interest” is trucks, so he is quite content being driven around for the most part.


Wouldn’t it be nice if I could accrue points with these miles?

100 miles = A brother/sister play time that doesn’t end in someone screaming.

200 miles = Good therapy session.

500 miles = A day without meltdowns.

1000 miles = Spontaneous back-and-forth conversation for more than a minute.

5000 miles = A week with no nagging verbal prompting.

10000 miles = A chauffeur for therapy sessions.

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Written by Spectrummy Mummy

October 22, 2010 at 6:57 am