Empiracal Evidence Good Enough For Me.

[Shalia]

Well, we paid for an Enterolab test for Tyler about 2 weeks ago, and we haven't gotten the results back yet. But since then, I've had him on a gluten-lite diet, since I intend to switch him over regardless of test results. (He's autistic, he *should* at least do a trial of gluten-free/CF.) So we've been switching out one food at a time on him.

Well, he went to Grandma's house this weekend, and she fed him all sorts of glutenny crap (under the guise of "well, you don't have a diagnosis yet...") and what happened? The poor kid has had diahrrea ALL WEEKEND LONG. He's been going to the bathroom 7-8 times a day. And he'd been perfectly normal beforehand. See what chicken nuggets and bagels do?

Personally, a glutenned weekend reaction is good enough proof for me.

It's just whether or not I get everyone else to believe it. *sigh*

(Please let Enterolab be positive at this point. Everyone has agreed to follow Enterolab's suggestions...)

[happygirl]

Shalia,

You obviously have seen the results...and you know that he does better off gluten! I commend you for being an advocate for your son. Good luck, and please keep us updated...will be interested to hear his results...you should get them soon, I hope.

Laura

[Fiddle-Faddle]

Hi, Shalia,

I got a lot of inspiration from Lisa Lewis' SPecial DIets for Special Kids---not so much the recipes, but just how she worked with her autistic son. Pardon me if I already said this to you on another thread, I can't remember what I've said to whom any more!

I don't know what it means, but my son responded really, really well to the gluten-free/CF diet, which we did for 4 months, and then slowly reintroduced foods back in gradually--and he didn't have any noticeable problems with them. Then, a couple of years later, I tried the gluten-free/cf diet on him again--and he didn't seem to have any change either way. At any rate, at this point (he's 11), we are keeping him gluten-lite, just in case he has some kind of silent intolerance.

There are some MARVELOUS recipes in Annalise Roberts' gluten-free Baking Classics for breads and cookies and that sort of thing, and I have a fantastic pancake/waffle recipe, let me know if you want it.

[tarnalberry]

well, there's one test out of the way. result: highly positive for gluten intolerance!

good for you for doing what's right!

hope he's feeling better soon.

[Guest cassidy]

Glad you figured out what is going on.

I had a negative blood test but went on the diet and felt better before I got the results. When other people would ask why I was eating special food I would say "I might have celiac." This opened up a discussion about why I thought I had something that a blood test said I didn't and people didn't believe me. I got a new doctor after going gluten-free and just told the doctor that I have celiac and they never questioned the diagnosis process.

So, I started just saying "I have celiac." People stopped questioning why I was eating things and just asked questions about celiac and not about me. Little white lies are sometimes helpful, if his results come back negative, you could always tell people that he was diagnosed and not explain that these particular results were negative. Your son's medical issues are not other people's business so I don't think that you have to go into detail with them. Positive dietary results are a reasonable way to make a diagnosis so, since he reacted to gluten, you have your diagnosis.

It is hard to stand up to people especially when they are family and are supposed to be supportive and love you. I'm sure you will do what is best for your son and I hope it ends up being easier on you than you may think it will be.

[Guest nini]

it was good enough for me with my daughter too. She had such a dramatic improvement on the diet that there is no doubt in my mind that she has this. She doesn't doubt it either because she remembers how she felt before going gluten-free. And her pediatrician said that positive dietary response was proof enough for her. Her blood work was negative, we did not do the biopsy, but her dietary response was miraculous.

[Shalia]

Thanks for the encouragement, everyone. Now if I can just get everyone to AGREE with me in the household. I was *so thankful* when Randy agreed to go w/ Enterolab because Tyler's chances of coming up with a true positive were so much higher.

Fiddle-Faddle, thanks for the book suggestion, I'll have to go look for it. i've heard it suggested before by someone else, and never looked at it because I hadn't figured out the diet equation for ME yet. So I'll go look at it.

Thanks everyone.