Sunday, July 14, 2013

Celiac...because life wasn't interesting enough...

When we began our journey down this twisting, turning autistic road, we received a lot of advice of what to do. My favorite has always been the advice to cut out all foods containing gluten (a protein found in wheat, rye & barley) and casein (which is a protein found in dairy products).  To do that was surely going to cure our cured Jenny McCarthy's kid, so why wouldn't it cure Laurie?  Why don't we just try it for a week or so and see what happens?  Just cut back on it a bit, and see if that does anything!

OMG!  Enough already.  I know that everyone means well, but just stop it.  I never actually said that to anyone, but I thought it on way too many occasions.  I mastered the art of nodding and smiling.  I swear that if there was science to back this up, I'd be all over trying just the diet for the sake of trying it. However, there wasn't any scientific evidence then, and there isn't any now.

Now if she actually had Celiac Disease, which is an immune reaction to eating gluten, that would be another story altogether.  We decided that the next time she needed a blood draw, we'd ask for that test as well, just to rule it all out.  No sense in altering lifestyles (any more than we have altered them already) and adding additional expense to the food budget all on a whim!

Then one day, opportunity came a-knockin'.  Laurie had to have her four year old vaccinations.  The nurse accidentally nicked herself with the needle after giving Laurie her shot, and that deems an automatic HIV blood test for the patient.  TA DA!  So we said, "Hey, since we have to wrestle her to the ground to take her blood for the really completely unnecessary HIV test, why don't you include a Celiac blood test?  Then we can get everyone to just be quiet and leave us the heck alone about this subject, once and for all."   I am paraphrasing, of course.  The nurse promised to call as soon as she got the results back.

So, you know those scenes that you see on TV and in the movies...the ones where upon hearing bad news, the starlets just collapse from shock?  Well, when she called and said, "Laurie has Celiac," I had one of those moments.  I actually collapsed into our recliner.  I could barely say anything at all.  Life, as I knew it, had ended.  This was worse than receiving the news that she was autistic.  Ridiculous, right?  Try having a kid who lived for PB&J, pizza, granola bars and goldfish....and now that stuff has to disappear (at least long-term temporarily until you find a reasonable substitute)!  Plus, baking was kind of an outlet for me.  So I gathered my wits about me, and I called John.  I think he may have thought I was joking.  Yeah, not so much.

First I turned to the internet.  Information overload!  I learned that if you go gluten-free, it was like an alcoholic giving up couldn't have any gluten at all.  Ever.  Even a grain of it could cause serious problems.  Cross-contamination is a HUGE problem.  For example, if you want to eat a hamburger, and it's been on a bun that was made with regular flour, you can't just take it off the bun and eat it because it was in contact with gluten.  There is no 3 second rule for food that has been in contact with gluten.

So then who was all freaked out?  Yep...that would be me.  We had Laurie see a pediatric gastroenterologist, who ended up performing an endoscopy, which confirmed the Celiac (the pediatric GI doc said that often those blood tests are false positives).  John, Annie & I were all tested for Celiac after that.  I was the only one who tested positive, so I [went completely insane and ate every glutenous food I could get my hands on - copious amounts of bread, cookies and muffins, as well as a very melty piece of tiramisu, were all consumed in the name of "this might be my last chance for gluten!"] had an endoscopy as well.  I do not have Celiac.

OK, maybe that's insensitive to Laurie, but I thought I would lose my mind if I had to go gluten-free as well.  It's not that I wouldn't, but come on!

With Laurie's health being number one priority, we saw a nutritionist who proved to know less than me (thanks to the information overload).  So the hubs took me to Barnes & Noble, and I found some books that actually proved to be helpful.  It was easier to look them over in person (a valid reason for keeping brick and mortar shops around).  I talked to friends and family, and while no one we knew actually had Celiac, a lot of people seemed to know others who were diagnosed with it.  I found some good websites (my favorite is The Gluten-Free Girl & the Chef -  I studied the gluten-free aisles at Wegmans.  I bought a special app that tells you what foods are gluten free (it's called "Is That Gluten-Free?") for the iPod Touch. (It's also available for the Android-based products).  And finally I switched my kitchen over so that the gluten-free food was by itself.  The original intention was to have everyone in the family go gluten-free, but when it became evident that Laurie was going to relegate herself to the same few foods, it just didn't seem worth the expense or effort.  We will change over once she begins to eat more things, though.

I tried different recipes, different foods.  There was a huge learning curve.  You can't just simply substitute one gluten-free flour for regular flour.  No, ma'am!  You have to mix different flours, and hope for the best.  Yippee.  (I recently discovered that Wegmans has a good all purpose GF flour mix, so it's better now).

Anyway, this kid was having no part of the big switcheroo.  Finally she gave in and tried the Snyder's GF pretzels.  Score!  Then Glutino's oreo-like cookies and Kinnikinnick K-Kritter chocolate cookies were a hit.  But we couldn't get her to try pastas or breads or anything, you know, remotely healthy (she, thankfully, was always a fruit and sometimes veggie eater, so at least we had that going for us).  With the help of a wonderful behavioral therapist, and our awesome respite provider (both are named Rachel!), we have been getting Laurie to try new foods...and have had the greatest success with Wegman's brand of GF chicken nuggets.  Wegman's came out with these gems about a year ago, and Laurie started eating them about two-three months ago.  (As a side note, the Wegman's line of GF foods has been great so far...she absolutely loves their brand of gluten-free blueberry waffles).

As for the great big leaps and changes and cure for autism...nope.  We saw a little burst of verbal language about a month after the diet began.  I believe that was completely coincidental.  Laurie certainly wasn't cured.  All it did, in my opinion, was make an already rocky road even rockier.  We have to bring food for her wherever we go, because we don't know if we'll be able to find gluten-free foods that she'll actually eat.  You have to check all labels, so shopping & food preparation take longer.  But we deal with it, much like everything else that is thrown our way.

We're happy to say that Laurie is doing well on the diet.  We just wish she had a more varied diet, but for now, she's healthy and happy.  And that's what matters.

1 comment:

  1. So do you think its a good idea for all autistic children to be tested for celiac's disease?