Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Gluten-free diet

Flat

with 11 comments

I didn’t want to go home.  I was enjoying the warm sunshine on my vitamin D-ficient body.  Knowing that although it was unusually cool for Florida, it was a heck of a lot warmer than where we live.  I liked having easy access to the just-right stimulation my kids enjoy, and the relative ease of finding food they could eat.  I like outnumbering the kids with adults, and all the extra help that means.  But most of all, because I only get it once a year these days, I loved the feeling of contentment of having the people I love most in the same place.

I didn’t want to go home, so I was pretty sour the last day.  I mooched around with a petulance that isn’t very becoming in a 32 year-old woman.  We finally got into the car on Saturday morning and set off.  I didn’t cry, because of the whole British stiff upper lip thing that is my genetic inheritance, but my heart was heavy, and I felt every one of the miles we drove along.

We split the trip into two days.  I cursed yet again that we’d forgotten the laptop, because over 5 nights we stayed in 5 different places, and that is a bit much for anyone.  We could have used a social story right here.  But Pudding and Cubby handled it like troopers, and even slept well in yet another strange place.

Yesterday we set off on the road again, and the rain just didn’t quit.  It was much colder now too, and miserable as we were to return, we referred to the gloomy weather as our winter of discontent.  The drive was punctuated just by the odd stop for food that I hoped rather than believed was GFCF, and gas (petrol) station bathrooms so disgusting that I saw colonies of a new species of fly.

Still we drove.  Right after the last big city, and usual source of traffic jams, we stopped to fill the tank.  Silently congratulating ourselves for the good time we were making- just over 1 1/2 hours form home.  No sooner were we back on the road again, when a warning light came on the dashboard, and we discovered a tyre that looked as flat as I felt.  At this point, you would do well to picture me with a raised fist, cursing the gods.  My plan, such as it was, to get the kids home and fed before dark evaporated.  And now there would be no time to get shopping for Pudding’s school lunch tomorrow.  We waited for the roadside assistance people and then frantically tried to find a tyre place in small town America on a Sunday which also had our tyre in stock.  We found it, but they were very busy, and couldn’t give us an estimate on how long it would take.  We could wait in their office (oh hell no!) or see what was open in the strip mall across the street.

Cold, wet, and wind-battered, we found a grocery store that looked thoroughly unpromising.  I’d never heard of the chain before, and I didn’t expect much from it.  I’ve never been so pleased to be wrong.  They had the largest selection of gluten-free foods I’d ever seen in the state we live in.  This place had more bread than Whole Foods, including the brands the kids had eaten at Disney.  We stocked up on pretzels and animal crackers, and made sandwiches in the store’s attached bakery.

I’m not sure I believe in kismet, but it does seem like we landed in the right spot.  Just in case it was our destiny to stop there, we also bought a lottery ticket.  We returned to the car and after a while it was fixed and good as new.  Almost four hours after the flat, we were back on our way again.

The adversity really changed our minds about the trip though.  Now we were longing to get home, and were thrilled to get the rest of the way without any hitches.  Spectrummy Daddy drove, Cubby slept, Pudding perseverated on a Sesame Street DVD, and I mused about the way something that first appears to be a mild catastrophe can make you truly appreciate your fortune.  Sometimes the universe knows the perfect way to change your perspective.

Written by Spectrummy Mummy

December 13, 2010 at 7:33 am

GFCF Dilemma

with 24 comments

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.