And would you like some dairy with that?

That is the new question around here for Adam.

After just about 2 years of no gluten and casein (minus a cheat every 6 months) we are giving him casein. And so far, knock on wood, please.don't.let.me.telling.the.blogshere.this.jinx.me, all is going OK.

In the past, when we've let Adam cheat to see how he reacts we've always given him gluten and casein. And there's been a reaction. So, we go back to none of either.

This past summer I decided to peel another layer of the onion and we went to a Pediatric Gastrenterologist. Who did a lot of blood work - as in FIVE viles (poor Adam, he was such a trooper). And everything came back just fine. Except the Celiac Genetic Marker Test. There are 2 genetic markers. You need one of them to get Celiacs. He's got 1 of the markers. But so does 3o% of the population. So. We got to thinking. With Adam's history of ear infections and an amazing amount of antibiotics (the first round causing C-diff at 6 months old) and with a marker for Celiacs maybe he does have either Celiac or a true intolerance to gluten. Actually. We know he has an intolerance. That was confirmed by the doctor. You can't make your body react the way his does - it's not just a behavioral reaction. But we aren't willing at this point to scope him. We know staying off gluten is a good thing for him still. With an intolerance there is still hope he'll be able to have it one day.

But casein. Well, the gluten and casein proteins react very similarly - especially when you are looking at it from a Leaky Gut Syndrome perspective. But what if all along it was just gluten?

Only one way to find out.
Here's a bowl of ice cream Adam.
Two days later - here's a taco with real sour cream (not tofu based).
Two days later - here's some carmel sauce for your apple slices.
And all has been fine.
And my Mom has been visiting us for 6 days.
And all has been fine.
No extra hyperness, persevering and rigidness.
No bumps or red ears.

We're still going to take it slowly. But wow. Being able to have dairy changes things SOOO much. Even if it's just here and there (like cheese slices, dairy toppings on stuff) a couple times a week.

We'll maybe try gluten next summer. Maybe it was just Leaky Gut and his stomach is healing. Maybe it's Celiacs. To do more testing for Celiac's there has to be gluten in his system. They look at IGA reaction and a biopsy. But right now it's great to know that all his systems are looking normal, if there ever was damage due to gluten it's gone, and (keep fingers crossed, knock on wood) he can tolerate casein.

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Remember What You're Teacher Told You - There's Never A Question That's A Bad Question

Remember when your teacher said there is never a bad question? Never be embarrassed to ask a question?

Well, the other night we were eating at Red Robin's. It's been a while since all 3 of us have eaten out at a restaurant. With Son being GF/CF it's been a fairly easy transition at home, but one we're still navigating in the world of fast food and restaurants.Usually when we go out Son has a hamburger, no bread and a fruit side unless we know the fries are GF/CF.

So, back to Red Robin. I had asked for a second basket of fries. Son thought it was pretty neat they give refills on the fries. He then asked for a refill on his drink. So, when the waiter brought him his 2nd drink he blurts out, "Can I have a refill on my burger too?" Oh the embarrassment! Didn't I raise my son better? But, before I got a chance to tell Son that he shouldn't have asked that the waiter says, "Sure!". I looked at him, Really? Yup.

Red Robin not only offers sides of apple slices, melon wedges, baby carrots & ranch dip, Mandarin oranges, fries or a side salad, they also give refills on kids meals! He said this is not anything they will really advertise, but they have always done this.

Wow! Refills on kids meals, plenty of fresh fruit and veges for sides on kids meals, and bottomless baskets of fries?!? It may not be a fancy place, but it sure works for us!!

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Eating With The Child On The Spectrum/Sensory Issues

Ever since starting the GFCF diet over a year ago Son has been more receptive to trying new foods and finding out that he actually likes them. We love that his list foods that he'll eat is growing. We can add 2 more foods to the list - sausage (for breakfast) and potato chips.
Yup - Son refused to eat potato chips.

And another milestone - he ate scrambled eggs on his sausage today. There was a time that he would completely freak if food touched other food on his plate. Once that happened his meal was over.

These may seem like minor issues to most parents. But for parents kids on the spectrum, or even just sensory issues, these steps are huge in making meal time enjoyable for the whole family as well as providing better overall nutrition for the child.

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Two Steps Back, Or Maybe Not

The son is on the GlutenFree/CasienFree diet. Has been for about 9 months. I totally credit many positives to this:
increase eye contact
decreased head banging while going to sleep (for the first time since he was 9 months old)
for a few months he had completely stopped, but when he 'cheats' it comes back
decreased verbal stemming
increased sensory regulation in many areas
increased desire to want to socially interact
increased ability to positively socially interact
desire to wear clothing other than sweats and tshirts
increase in list of foods he will eat (meat, fruit and veges now!!!)
decrease in small unexplainable bumps on upper arms and legs
no more need for the agenda for the day
increase tolerance for changes in the routine on spur of the moment
no more red ears

So last Friday he was grumpy. And obsessive and persevering. He'd been banging his head the past 2 nights - a lot. Enough that I said - hey - what's going on here? You are OUT of sync. Saturday was much much worse. Really really bad. Obnoxiously bad. Then he has diarrhea, but is feeling fine. That night he shows me his bumps are coming back on his arm. It became very apparent that he has eaten something he shouldn't. But he denies it. We persist. It finally comes out - he had been sneaking brownies I had made earlier in the week. Yea, I noticed they were missing - thought it was the husband munching on them. Sunday was pretty bad too. Yesterday was better, and today he is just fine again.

Back in May he snuck some gluten and we had the same reaction for about 4 days, about 2-3 days after ingestion.

Interestingly - casein brings out the hyperness only. Gluten tends to bring out all ASD stuff. We do occasionally let him cheat - a dab of real sour cream on his taco instead of the tofu version. Half slice of cheese in his scrambled eggs. Not very often and not when there is something big happening in the next few days (major test, visit from family, big change in routine things). We tried an ice cream stick a few times - hyperness to the extreme, plus some motor sensory stuff (spinning and crashing).

Darn. His stomach isn't healed yet. Darn. This diet is hard at times. I shouldn't complain. We found a treatment that works significantly. We've been able to lower his anxiety and ADHD meds to the lowest possible dosage (instead of increasing them each year as he gets older, he is on less now than he was when he was 5!). It is very easy to get lots of GF/CF food in the area of the country we live in -even eating out. I'm so thankful for the research and support there is for ASD and treatments. This past weekend he asked why the doctors can't just go into his stomach and plug up the leaks. Soon son, hopefully soon this too will happen and you don't have to worry about what you eat.

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