Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Starting Son With Autism On gluten-free Diet


amberlynn

Recommended Posts

amberlynn Contributor

For one, to his teacher. I provide all snacks, but they keep sending 'treats' home for his good behaviour (OK, he's the ONLY kid in his class fully potty trained, who talks - a lot, lol, etc etc...), and its driving me batty! He's got several other food allergies as well, and I'm scared of completely overwhelming her, lol.

His last allergy test showed Wheat had elevated. Not by much, but I still don't want it to get any higher. The child is ADDICTED to bread. So, here's my next question - how do I replace that for DH?? I can deter him from begging for bread all the time, but DH is a slacker in the kitchen... and the kid is constantly begging for bread and butter. I need quick, EASY, ideas for DH. I'm going to be making some Pamela's bread on Friday's so he's got that - but the kid won't eat it yet. He's also allergic to dairy and soy soo....

Family - They don't know I'm gluten-free. Only a few, select family members do - the supportive ones. They aren't going to understand taking something away that's "healthy", kwim?

And lastly, if you have a child with autism that you put on a gluten-free diet, how long did it take to see results? Did it get worse before it got better? He's doing really good, and each time we find something in his diet that affects him, when we pull it out we see results in a few days - most recently we tried soy again, only to discover it still causes SEVERE behavioral problems (constant tantrums, screaming, aggressiveness, and major GI issues).

Our set date is the 1st, but while he's home with me, I don't make anything gluten-related, so for the past 2 days, he's been entirely gluten-free (except for snack at school, I think). We're going to the school today, and I'm going to investigate what snacks he's got left.

Thanks for any info!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

I found I liked corn tortillas better than any bread I tasted. I liked them toasted in my toaster just like bread. With butter or added jelly and peanut butter. He might like them just rolled with butter or fried in butter with melted cheese on top. If you toast them a couple of times till they are a little crispy, they make a great base for pizza.

I hope that works for you. If you can find a tortilla factory close to you that would let you take a tour, it might be exciting for him and interest him in eating them.

EmilyR83 Rookie

My brother in law tutors an 8 year old autistic boy who is on a gluten free diet. I am not sure how long it took, but I know it was pretty quick to see the change in him. When he gets some gluten-he is crazy-with major behavioral problems.

As far as your family dealing with him and gluten. I was say-point blank-he will not be eating gluten. He has a gluten intolerance. If you feed him gluten, he will not come over to your house anymore. Here is a list of items with gluten in them-any questions call me. If they have a problem with that, well-thats there problem. I have a feeling they would get over it pretty quick. When I went gluten free with my son, I had a few family members rolling there eyes and such, but when they saw the huge change in him they change quickly.

Also, if you are going to go gluten free-you need to go 100%(for him anyway). My baby is only 15 months and doesnt understand he cant eat certain things so our house is 100% gluten free. If you think your son or your husband would have a hard time not eating/serving it, dont have it in the house. I dont really like any gluten free bread myself, but rice cakes are good-would he eat those?

Good luck!

Wolicki Enthusiast

udi's gluten-free bread is your answer. everyone loves it. dont buy regular bread. trust me it's great!

mommida Enthusiast

Please be aware, some individuals go through gluten withdrawal. When you said he is "addicted" to bread, he really could be addicted. There are medical articles that explain gluten has an opiate effect in some individuals. I don't have much spare time right now to find the links. If you need help getting information, some one here at this site will help. :D

amberlynn Contributor
Please be aware, some individuals go through gluten withdrawal. When you said he is "addicted" to bread, he really could be addicted. There are medical articles that explain gluten has an opiate effect in some individuals. I don't have much spare time right now to find the links. If you need help getting information, some one here at this site will help. :D

Oh I know!! That's why I've been verrrry slowly weaning him off gluten. The only person in my house who won't be gluten-free is DH. I think that since DS hasn't had bread in a few days, he might actually try the gluten-free bread I've got now. DH gets frustrated because he doesn't know how to cook ANYTHING and DS always wants bread and butter - so he just gives it to him. DH refuses to go totally gluten-free, but he's pretty supportive of trying it with DS, so long as I give him a list of ideas to feed the kid, lol. He's completely worthless in the kitchen! So, I'm going to buy a bunch of chicken and spend a day making nuggets and freezing them, and I'll make sure to have gluten-free bread on hand on the weekends when I work a lot.

As far as family - they don't get why he can't have MILK (he's anaphylactic!!), so the gluten-free thing is going to be VERY difficult for them. But, I'm going to tell them that he's tested positive on a gluten allergy test, and hopefully they'll just buy that, lol! Dh & I talked about it, and if I explain that its a diet that helps a lot of Autistic kids, my Step mom will probably get rigth on board, lol!! From what I understand, its helped a lot of kids with Autism, so there's no sense in not trying it, especially since his last allergy test came back positive to wheat.

Thanks for the advice!!

RobynJ Apprentice
Please be aware, some individuals go through gluten withdrawal. When you said he is "addicted" to bread, he really could be addicted. There are medical articles that explain gluten has an opiate effect in some individuals. I don't have much spare time right now to find the links. If you need help getting information, some one here at this site will help. :D

My son did have gluten withdrawls. They were really intense. If he hadn't been so sick- I think weaning him off would be a better way to go. I check some of the sites for autism for more information.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

One of the best resources I have found is Special Diets for Special Kids by Lisa Lewis. It is both a gluten-free, casein-free cookbook and also a telling of her quest to find the source of her autistic son's symptoms. Casein is often a problem for ASD kids as well, but the author recommends omitting one at time instead of both at once.

Although it is usually recommended to stay away from gluten-free breads at the beginning of a gluten-free diet (they ARE difficult for a gluten-damaged tummy to digest), I would not recommend that for an autistic child. Any kind of a change in routine is so often poorly tolerated by ASD kids, I would go ahead and sub gluten-free bread (everyone is raving about Udi's, so I'd try that first, or make your own from Pamela's gluten-free bread machine mix).

It would be helpful if your husband and family could be on board. I really feel for you that they are not. It's so much easier when the whole house can be gluten-free. Maybe if behavioral improvements are obvious, then hubby and family will be more likely to be helpful?

Best of luck to you--please keep us posted, okay?.

Fiddle-Faddle Community Regular

Whoops, forgot to reply about my own experience.

Our son reacted badly to cow's milk when we first tried it when he was a year old, (I breastfed, so except for the first week when I had no milk, he had no formula). We gave him soy milk for a year, and then gradually mixed it with cow's milk, and then he seemed to have no problems.

We pulled our son of both gluten and casein when he was in kindergarten, and saw amazing results with behavior and focus.

This was 9 years ago, so we didn't have a lot of resources available to guide us. After several months, I gradually added first gluten and then casein back into his diet, with no noticeable effects. HOWEVER, I did not know then that that just meant that his intestines had healed, not that it still wasn't hurting him.

He began having horrible stomach aches, and enormous, hard, toilet-clogging poops. The stomach aches were so bad, the teacher said she nearly called 911. But they weren't every day, so we didn't put it together with his diet. We also have always eaten a lot of rice in our family, so he wasn't getting the consistently huge amount of daily gluten that most in this country eat.

When I was diagnosed with celiac years later, the family went gluten-lite by default (I wasn't going to cook gluten!)--and his tummy aches (and those of his siblings) disappeared. We are all gluten-free now, and dairy doesn't seem to be a problem, but we do have a lot of almond milk and coconut milk. (They taste good!)

HTH

purple Community Regular

How about gluten-free waffles?

Open Original Shared Link

I use 1 1/2 cups df milk, add berries if desired. Keep a stack in the freezer.

amberlynn Contributor

Oh yes, I make gluten-free waffles, muffins, etc. I tried Pamela's bread mix, but I just got a stand mixer yesterday and I didn't have much luck with my hands, lol! And I have no fear of trying to make things! I only work nights and weekends, so I have most of the day to bake!

So far, I've noticed a BIG difference in him! We had an 'oops' Thursday and Friday, but it didn't seem to hurt too bad - except that he got a huge RASH on his back! So, the doctor thinks really does have a gluten allergy or Celiac!! Since it was a pretty obvious reaction, we'll treat it as such. No more gluten for that boy. And DH is completely on board, who is who I really need on board more than anyone else!

He's always a talker, but just being gluten-free last week he's coming out with questions, and answers! That's new, lol ;). Behavior wise... slight change. Not nearly so many meltdowns. Hopefully we can figure out that this really is what the problem is. His teacher said she wasn't sure if he really fits the ASD diagnosis, and that she thinks he might have Sensory Integration Disorder... who knows.

Thanks for the help!

CMG Rookie

My 6-year-old daughter and I both are gluten free. My daughter loves to have toast for breakfast. After trying many gluten free breads and not liking any of them (I haven't tried Udi's yet, just learned about it) I finally bought a bread machine and a book called Gluten Free Baking Classics for the Bread Machine. There is a whole section of dairy free, egg free breads (which I need for my other daughter). It only takes a few minutes to get everything mixed up and into the machine and then I can forget about it. All the recipes I have tried have been really good. They also pass the test of my non-gluten-free husband.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,345
    • Most Online (within 30 mins)
      7,748

    Louise Sullivan
    Newest Member
    Louise Sullivan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...