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Shalia

Tyler's Test Results

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Got his test result from Enterolab. We could only afford the IGA one right now, and that came up barely postive. It came up 11, with 10 being postive. *sigh* I'm trying not to feel guilty taking away all his favorite foods, but I'm having a hard time with it.

Maybe it's all in my head since I know *I* do so much better off gluten... but it's still a positive, right? My husband has agreed to abide by it, seemed a bit bummed by it but told me to make a loaf of bread to make Tyler's lunch with tomorrow. So I think he's going to try.

But I feel SO GUILTY. All the kid eats is gluten and casein. And I want to get the casein test, with him being autistic and all.

And after this weekend of hell from him being gluten lite and coming back to all sorts of terrible foods, and then puking and having D everywhere? I know what I know. But I can't help feeling bad.

Am I abnormal here?

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You are a mom trying to give her son a healthy, happy life. That is not abnormal.

The best results are not a test, but how your son responds. Plus, there is research indicating the link between autistic symptoms and gluten and casein.

Taking food out of your son's life is not going to damage him. It will be tough though. But not taking them out, and never knowing if it is the problem-that is the damage.

I know the tests are expensive, but do you have insurance? some insurance companies DO reimburse for enterolab. someone once posted the insurance codes on here...you could call your insurance co. and see if they cover them. Just a thought.

As I have learned, there is no price too steep to get healthy.

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Unfortuately, our insurance won't cover them, I called and asked. :(

My MIL isn't talking to me now. She thinks I'm mean. And she's pissed. *sigh* This is goign to be fun.

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have more to add:

i'm sure you've already did searches on pubmed, but thought i'd post anyways http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed

I did searches with keyword pairs like: autism and gluten, autism and casein, autism and celiac

ones that particulary caught my eye included (and there were many more)

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

Shalia,

I'm sorry about your insurance. It was worth a shot. :(

I'm not trying to pry, but if you feel the testing is worth it, is there any way to get a small loan or put it on a low interest credit card?

And the MIL is the least of your worries at this point, although it seems overwhelming. YOU are the mom to your sweet son. But---I know it is tough when your family doesn't "get" it.

Not that it matters, because you and your husband make the decisions for your family, but what is her problem with all this?

Hugs to you. I wish I could help more.

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Wow, thanks! Lots of reading. I love medical info. :)

I appreciate you spending the time. I'm gonna go read now.

ETA:

Teh problem with my MIL is that she watches Tyler on the weekends. I'm a full time student, and that's when I get my homework done, and Randy works all weekend. Tyler goes over there. We need her cooperation or we need new daycare! *sigh*

We might be able to do the casein test now that my student loan came. But I was going to do ALC AT testing with it because I'm still having issues and I'd like to know what foods are causing it. But I might have to put off mine.

ETA more:

The fact that you are answering me is helping enough. I really needed to vent tonight. Thank you. :)

have more to add:

i'm sure you've already did searches on pubmed, but thought i'd post anyways http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed

I did searches with keyword pairs like: autism and gluten, autism and casein, autism and celiac

ones that particulary caught my eye included (and there were many more)

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

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Shalia, no problem. I highly recommend doing searches on pubmed for more info. Like I said, I just posted a few to get ya started.

I think reading medical abstracts and journal articles is fun for some reason. :) Oh, wait, its because I have had docs who haven't a clue, that's why :)

I can't remember-forgive me-was he tested via traditional bloodwork?

shalia,

gotcha about the MIL. time for a sit down discussion: tell her it is non-negotiable. either she is on board, or not. i learned to be much more assertive with my needs (celiac and diet related). Non-negotiable means "what I say goes." :) But, you are the mother. (I'm not trying to make you feel overwhelmed, I'm trying to show that it IS within your power to make this a priority. I wish I had learned this earlier on) She will try to make it a power struggle. It is actually very easy to avoid a power struggle (think non-negotiable, again, haha!) If she goes behind your back after saying she'd follow your orders: then her chance was up, and he is out. You are the one who has to protect your son (if you decide to go gluten-free/cf). Its amazing to me how people are willing to put kids on a ton of meds with no hesitation, but think that taking foods out can harm them (when it is the foods themselves that ARE harming them!) someone on the board (nini?) used to say that no one ever died from NOT eating wheat. :)

Hope you have a restful nights sleep. xoxo

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Hi Shalia,

I noticed you were still on.

I just wanted to say hi and let you know I feel your pain on the MIL. Tell her straight the facts are... this test came back + and it is the only treatment that can help this. Make sure your husband tells her too.

Happy Girl, I agree with everything you've said!

L.


Michigan

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thanks, mommida. :) I am only trying to pass on the info that I 'wish I knew back then.' (I hadn't found the board at this time). I am a firm believer in "if ppl ask for help, they want the real answer, even if it is tough and they don't like it right away" vs. just prancing around the topic :D

maybe i should change my user name to "non-negotiable"--ha!

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Sorry you're having problems with your MIL, but glad you're doing what's right for your son. Have you sat down with your MIL and shown her the research on autistic kids and the gluten-free/Casein free diet? Could you turn this into a positive somehow by helping her to understand how much better he will be because of this way of eating? You think she'd be thrilled that her DIL was such an intelligent and caring mother that she found a way to help her grandson deal with autism.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Guest nini

true no one ever died from NOT eating wheat, but eating wheat could kill someone...

regardless, there is too strong a link between autism and the gluten and casein intolerance to ignor it. I would go with the approach to MIL that the test WAS positive and that this is the only thing that is going to help your son and if she isn't going to be on board with you on this, you will be forced to find someone else to care for him on weekends and limit his time with grandma. Does she want that? I know it's harsh, but you are the parent here and what you decide goes.

Besides, positive dietary respoonse once he's completely gluten and casein free will more than convince any doubters.

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Well, I'm trying to remind myself she's in mourning like I was when I was first diagnosed. I've expected it for Tyler, so it's not a huge deal to me, and I'm STILL bummed. She's devastated.

But I think she'll eventually learn to deal. And if not, we'll go to supervisd visitation, and I'll find a teenager to come over to our house on weekends while I'm home studying and have him entertained that way. :) I'll figure something out.

Thanks, everyone. We'll get through this. :)

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Guest nini
Well, I'm trying to remind myself she's in mourning like I was when I was first diagnosed. I've expected it for Tyler, so it's not a huge deal to me, and I'm STILL bummed. She's devastated.

But I think she'll eventually learn to deal. And if not, we'll go to supervisd visitation, and I'll find a teenager to come over to our house on weekends while I'm home studying and have him entertained that way. :) I'll figure something out.

Thanks, everyone. We'll get through this. :)

]

I was devastated when I realized my daughter had to be on the gluten-free diet as well as me, at first... then I realized that she would most likely not suffer from the lifelong complications that I had, and for that I am grateful. I had my biggest pity party for her when I realized that McDonald's fries were not safe and that they had been making her sick, and then when her favorite cereal had it's ingredients changed and they added wheat to them and they were no longer safe. But I got over it. It's JUST food, and there are plenty of other options out there, and more everyday. As more people get diagnosed we will start to have many more options available. And it's not a fad that's going away because once we are on this diet we have to be for LIFE... (this is for confirmed Celiacs...)

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Although my 2.5yo son was never evaluated for autism his personality and behavior has changed dramatically in just a few months. I never thought much about my son not being very emotional, or having a preference for books rather than active play, or crying when his sister got too close or too touchy or too loud. In a playground environment, he would rather look at the trees and grass than play at first, but he would eventually go play with the rest of the kids. Didn't think much about it. After all that is how I always was. Happier just being left to myself until I felt comfortable. My dad was the same way. We're just a little shy and slow to warm up to people and situations.

It was only after he went gluten-free after Enterolab tests that his whole personality changed. He's much more active, and likes to run around and play with other kids, and just run around being goofy. A couple weeks ago he was running around with a carrot slice sticking out of his lips, shaking his head and jumping around for about 10 minutes, acting like he thought it was all pretty funny. Then another day, he was eating carrots again and came over to me, opened his mouth and showed me the chewed up carrots. It surprised me so much that the look on my face made him giggle and do it again and again. :rolleyes: It was just so uncharacteristic of how he used to be.

Now, he's an average 2yo boy. Active, interested, goofy and opinionated. He also smiles so much more now.

Of course I have no idea if he was anywhere on the autism spectrum because it never occurred to me that it was anything other than an inherited personality trait. Just thought that maybe my experience with some personality changes I've seen in my child might help.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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