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StaceyinLA

Anyone tried GAPS diet for Autistic child, and, if so...

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how in the world do you go through the stages with an autistic child who is extremely picky about food?

My daughter would really like to try some diet-related stuff with her son (nearly 4), but he is pretty picky, and we know we are just gonna have to focus on the healthier things he WILL eat, but that doesn't necessarily follow along with the concept of the GAPS diet and getting the gut right.

We are hoping to try something starting early in the summer. This is so I can help her because my p/t job follows the school year, so I'll have more time to help her food prep. Otherwise she's gonna struggle to stick with it because she works weekends, and without food prepared for him, my son-in-law is going to wind up giving in and giving him stuff he shouldn't have. It's gonna have to be a joint effort, but it's something we all REALLY want to at least try.

I'd appreciate any suggestions.

Edited by StaceyinLA

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My DD8 has an ASD diagnosis, but I haven't even bothered to TRY any sort of specialized diet.  Both she and her younger brother, who doesn't have a diagnosis will just not eat if the food available isn't something they eat.  Now, by just not eat, I don't just mean "not eat" I mean that after a bite or two of vegetable they actually will throw it back up all over the table.  I am not sure if you are dealing with that level of feeding issue or not, have they ever done any feeding therapy with your grandson?

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Any new special diet is challenging for a 4 year old!  It's especially hard for little ones to see others eating things they love and aren't able to have.  I suggest they remove all unacceptable foods from the house and only eat them when away from home, so their child doesn't see it and want it.  That will be difficult for all of them, so I would suggest they ease into it by going GF first, then adding in/removing the rest.  They should keep in mind that he might have other unrecognized food sensitivities, plus other underlying medical issues that may need biomedical treatment.  I assume they are also in Louisiana?  Dr. Stephanie Cave is in Baton Rouge.     

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 Does he have  GI issues?  

I did more of the Specific Carbohydrate Diet recommendations to try to help my daughter because of her chronic diarrhea, not because of her autism.  (The GAPS diet is based on the SCD but with extra protocols for things like detoxification.)  My daughter was already in her late teens, though.  I think it would be really, really hard to get a 4yo to go along with everything GAPS recommends...especially things like drinking a lot of bone broth and sauerkraut liquid.  It seems like the warmer summer months would be a really hard time to convince a little kid that he wants to start eating  a lot of soup!

FWIW, I was taking my daughter to a naturopath for awhile, and she was supportive of SCD but wouldn't go as far as recommending GAPS.  Still,  I don't think there's anything wrong with trying things like juicing or including more probiotics or other healthier eating habits.  If there aren't GI issues involved but more behavioral issues,  I'd look first to see if he might react to things like artificial dyes or even fruits, etc.  that are restricted on the Feingold diet to help with hyperactivity.  And I honestly wouldn't try to make huge changes all at once if it will cause a lot of family stress/chaos. 

Good luck!   

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We haven't tried GAPS, but we went gluten-free cold turkey in February of 2018 for medical reasons. The same steps would be helpful for any drastic change:

  • Know what is good to eat. Make sure you have recipes and a meal plan--you're not going to be able to wing it for a while. Join groups (e.g., on FB) to find others' advice on the most helpful cookbooks, blogs, and products.
  • Clarify with everybody that nothing off-diet comes into the house, but adults/teens who don't need to comply should feel free to eat as they please away from home.
  • Evaluate every item of food in the house (including condiments and emergency supplies). Move unacceptable items to a contained area and stop buying non-compliant foods. I renamed our kitchen island "Gluten Island" while working on this.
  • Find the most appropriate means of removing unacceptable items. (I gave some items to the food bank, offered a bag of other items in my local free-stuff FB group, and trashed what I had to.)
  • Try out everything that sounds good and keep the recipes/products that were liked.

That said, I wouldn't jump into GAPS as written for young kids without a dietitian's help--stage 1 in particular sounds like it would lead to weight loss. I might try modifications that included substitutes for the child's already accepted food. I might try to replace wheat with rice and dairy with nut products, and offer broth-based soups--but with little in the way of hard evidence, I wouldn't keep apples and oranges from a preschooler who likes them, and especially one who is wired to be rather inflexible. (And I'm not down with raw eggs for a person with a beginner immune system, but if the pediatrician is, his/her opinion deserves priority.)

Edited by whitehawk
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If you just want to get his gut better, you can do food combining, meaning you organize what he eats to be easier to digest but you don't necessarily restrict what he eats. Is he currently picky because of textures and sensory? Or does he have fatigue with chewing from low muscle tone? (If he has cherub cheeks or stops eating even when he's hungry, those would be signs.) 

It's much more important to INCREASE VARIETY than it is to remove foods. Offenders naturally get shoved out if you increase variety. Most people eat a very narrow range of foods. I agree with trying the nutritionist. I used one for years and that's how I learned about food combining. Totally reversed my candida, MCS, etc. 

Things he might not be eating that could work for him?

dates

avocados

hummus with carrot sticks

all kinds of nuts

almond butter

coconut milk

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good luck.  dudeling didn't recognize hunger - he could go quite awhile without eating.  in the meantime, blood sugar issues galore and that was a whole new level of trouble.  so, I gave up, because he had to eat.

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14 hours ago, gardenmom5 said:

dudeling didn't recognize hunger

People usually assume it's attention, being busy, being a boy, etc., but that also sounds like an interoception issue. It's another thing the op could look into. Basically expected to be an issue in autism. Working on it also promotes communication and self-awareness, which can lead to problem solving. It's a really hard stage when the dc can't tell you WHY they're having the problem. 

https://www.kelly-mahler.com/what-is-interoception/

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Thanks for all the input! We may just start out with our original plan, which was complete gluten and dairy removal, as well as making sure he has NOTHING with artificial anything in it.

Biggest issue is gonna be how much he loves carb-y foods AND cheese.

The bonus - he does like a lot of different fruits/berries. I’ll need to look into what is excluded on Feingold - haven’t looked at that in detail yet. He doesn’t eat many vegetables at all, but he will drink a little smoothie here and there, and that’s a good way to incorporate some greens. 

His favorite food? Macaroni and cheese. He WILL eat the one that is made with chickpea noodles, but I think it still has actual cheese. We may have to work to just elimiinate gluten at first, along with all the artificial stuff, and try the dairy after he’s made some adjustments.

He still really likes the organic baby food pouches that have fruits/veggies and chia (just one particular one). I think the brand is clean, so that’s at least something he loves that he can keep eating (he eats one right when he wakes up - it’s like a ritual), in addition to fruits.

The hardest thing is getting him to eat meat of any kind other than a chicken nugget, and not just ANY nugget either. I’ve got a really good recipe for grain-free ones that are really clean, and VERY good, so we will just have to make up a bunch and freeze them.

He does like some nut milk, and doesn’t drink any regular milk unless it’s in something. Doing milk-free isn’t gonna be an issue. Only the cheese is gonna be a problem there.

We are just gonna make a plan, and pray we can stick with it at least a few weeks to see if it helps him. And yeah, the other kids will just have to deal.

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25 minutes ago, StaceyinLA said:

he loves carb-y foods AND cheese.

Sigh, that usually tells you what he's reacting to. It can also be a texture/sensory thing. Try other things that are comforting/easy to eat. Try lots of textures and see what works for him. We don't eat much wheat here and I try to keep ds largely off milk. It's really not that hard. Trader Joes has beautiful pastas. Kale is really great with kids. Just cover it with spaghetti sauce and boom. My ds likes grated carrots. So for our starch lunches we might eat a baked potato or sweet potato fries, grated carrots, nuts, rice, kale. He LOVES beets. You dice and boil them down till their sweet. So sweet potatoes (whole or fries), grated carrots, beets, limas, lots of things are sweet. On the sweet potatoes, they're super easy in the instant pot. My ds LOVES them so your little gds might too.

28 minutes ago, StaceyinLA said:

He still really likes the organic baby food pouches

That sure sounds like a sensory or oral tone issue. Have you tried grating foods or cutting them in really small dices? In our house some of the people like their pieces BIG and some of them need the pieces really fine. And it's not the way you'd expect, because the sensory avoiders like the big crunchy stuff and the sensory seekers like the small, super fine bites, go figure. And I can tell you it actually HURTS to eat pieces that are big for someone like me. My dd will make a salad for me with her huge pieces and it is too painful even for me to eat. 

If you do the sweet potatoes in the instant pot, you can mash them. We do a lot of mashed potatoes. Meat that is ground or shredded. 

He will probably be fine with smoothies, almond butter. If you spread p-butter or almond butter on celery, then *cut it* into small bites that don't hurt. It's a pain and messy, but it might help him eat it. With ds we would do pbutter on banana slices. You can get a banana slicer at the grocery for $2 and he can cut them himself and be invested. Then he can spread the pbutter and put a raisin on each. 

33 minutes ago, StaceyinLA said:

The hardest thing is getting him to eat meat of any kind

We did a social group last summer that went to a restaurant and I swear every kid (all with ASD) ordered chicken nuggets at this beautiful chinese bistro. Have you tried fish nuggets? Trader Joes might have some that are gluten free. I use fish nuggets from TJ a lot with my ds because he'll eat them. He also eats (don't die) corn dogs. Other than that, try the ground meat like ground turkey or shredded meat. We don't eat beef here, so it's poultry alternated with fish. If you cook the chicken breast or tender and then dice it very fine, how does he do? I'll throw that fine dice meat on a salad and he eats it up. If I just gave him straight chicken, it would be a lot harder to eat and he wouldn't eat much. You can put avocado in the salad too.

 

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7 hours ago, StaceyinLA said:

We are just gonna make a plan, and pray we can stick with it at least a few weeks to see if it helps him. 

Keep in mind that many people don't see significant improvement from removing gluten until around three months into the diet, as it can take that long for any intestinal inflammation to subside.  Make note of when he goes GF, and be glad for any changes that occur in the short term, but continue to watch for changes up to three months later.  

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On 5/19/2019 at 3:38 PM, PeterPan said:

Sigh, that usually tells you what he's reacting to. It can also be a texture/sensory thing. Try other things that are comforting/easy to eat. Try lots of textures and see what works for him. We don't eat much wheat here and I try to keep ds largely off milk. It's really not that hard. Trader Joes has beautiful pastas. Kale is really great with kids. Just cover it with spaghetti sauce and boom. My ds likes grated carrots. So for our starch lunches we might eat a baked potato or sweet potato fries, grated carrots, nuts, rice, kale. He LOVES beets. You dice and boil them down till their sweet. So sweet potatoes (whole or fries), grated carrots, beets, limas, lots of things are sweet. On the sweet potatoes, they're super easy in the instant pot. My ds LOVES them so your little gds might too.

That sure sounds like a sensory or oral tone issue. Have you tried grating foods or cutting them in really small dices? In our house some of the people like their pieces BIG and some of them need the pieces really fine. And it's not the way you'd expect, because the sensory avoiders like the big crunchy stuff and the sensory seekers like the small, super fine bites, go figure. And I can tell you it actually HURTS to eat pieces that are big for someone like me. My dd will make a salad for me with her huge pieces and it is too painful even for me to eat. 

If you do the sweet potatoes in the instant pot, you can mash them. We do a lot of mashed potatoes. Meat that is ground or shredded. 

He will probably be fine with smoothies, almond butter. If you spread p-butter or almond butter on celery, then *cut it* into small bites that don't hurt. It's a pain and messy, but it might help him eat it. With ds we would do pbutter on banana slices. You can get a banana slicer at the grocery for $2 and he can cut them himself and be invested. Then he can spread the pbutter and put a raisin on each. 

We did a social group last summer that went to a restaurant and I swear every kid (all with ASD) ordered chicken nuggets at this beautiful chinese bistro. Have you tried fish nuggets? Trader Joes might have some that are gluten free. I use fish nuggets from TJ a lot with my ds because he'll eat them. He also eats (don't die) corn dogs. Other than that, try the ground meat like ground turkey or shredded meat. We don't eat beef here, so it's poultry alternated with fish. If you cook the chicken breast or tender and then dice it very fine, how does he do? I'll throw that fine dice meat on a salad and he eats it up. If I just gave him straight chicken, it would be a lot harder to eat and he wouldn't eat much. You can put avocado in the salad too.

 

 

Thank you for the info. I'm definitely gonna mention to my daughter to cut stuff up really small and see if that helps. I guess you never know until you try!

You gave me lots of other really good ideas! Definitely gonna try the fish - I actually have a fabulous recipe for grain-free cod filets, and we could certainly cut it into small chunks and make him some fish nuggets. Her other kids would love them as well.

Not sure how he is with potatoes, but I'll mention that stuff to her. Maybe trying it all in little bites would encourage him to eat it!

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On 5/19/2019 at 10:30 PM, klmama said:

Keep in mind that many people don't see significant improvement from removing gluten until around three months into the diet, as it can take that long for any intestinal inflammation to subside.  Make note of when he goes GF, and be glad for any changes that occur in the short term, but continue to watch for changes up to three months later.  

 

Wow - that's a while for sure! I think if she saw any improvement at all after a few weeks, she would certainly be willing to stick it out. I think if she sees no change within a month, she may find it a bit more of a challenge, but I'm really gonna encourage her. I think if she can find some things he'll eat, and get in a good groove with it, it'll be no problem.

He does LOVE sandwiches too, and that's kind of her go-to when he won't eat other things. We're gonna have to see about finding some sort of decent bread he'll eat.

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I was terrified of removing gluten and dairy from my special needs child's diet because she only ate a handful of foods, all of which contained gluten and/or dairy. There is evidence that kids with "leaky gut" can literally get addicted to gluten and casein because of the chemical structure similarity to morphine.

I found a GFCF muffin recipe that she liked and mixed pureed fruit, veggies, and even meat/poultry into the batter. Yuck, but she was willing to eat it. After detoxing from gluten & dairy, she became willing to eat a wide variety of foods. Now 7.5 years later she's actually my best eater of my 3 older kids.

 

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GF breads aren't great, but Canyon Bakehouse makes some of the better ones, including a white bread that's also free of soy and dairy. Siete makes decent gf tortillas--we use almond flour when we can get it.

Speaking of nuts, if nuts/tree nuts are okay, Miyoko's makes a good dairy-free (and gf) mozzarella. They don't have a sandwich cheese yet that I know of.

You may already know this, but people with autism have a very elevated risk of celiac disease. (Some have obvious symptoms, others not.) If he's going to be tested for it, the tests rely on showing a reaction to gluten, so they only work if he has been eating it regularly--so you'd want to do the blood test before going gf.

Edited by whitehawk

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13 hours ago, StaceyinLA said:

Maybe trying it all in little bites would encourage him to eat it!

There are SLPs who specialize in feeding and sometimes they'll do a co-treat with an OT. Getting evals and professional help from SLPs and OTs are *normal* for this. The insurance should pay for it. The OT eval, possibly with someone who is SIPT certified, could solve lots more problems and give you a ton of great info. Sensory issues affect every area of life, but he's so young he can't tell you what he's feeling and what the problem is. The OTs will do things like handing them an array of candies and seeing what they like, trying an array of music and seeing what they like. 

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13 hours ago, StaceyinLA said:

He does LOVE sandwiches too, and that's kind of her go-to when he won't eat other things. We're gonna have to see about finding some sort of decent bread he'll eat.

Why bread? You don't need bread. My ds for lunch

-rice cake with hummus 

-carrot sticks with hummus

-sweet potato fries or a baked potato or sweet potato

-walnuts/pecans/cashews/pistachios

-celery with peanut butter

-rice pilaf

-peas, limas, corn--he likes peas and corn frozen too. Our run joke that corn straight from the bag is a corn-rito, haha.

-boiled beets diced really small. You can also roast them, yum.

-grated carrots

-kale, steamed and served with brown rice pasta and spaghetti sauce

You don't need bread. Bread slimes the gut, causing the leaky gut that is causing the symptoms. Doesn't matter whether it's GF bread or wheat or whole grain or whatever. Bread just isn't necessary. Anything you're eating with bread should stand up as being worthwhile on its own. Give him the tomato and the salad and the meat rolled up cute or put the p-butter on celery. 

Eating to help your gut is really easy once you let go that you have to recreate how you used to eat. 

Hummus comes in different kinds from the store. My dd makes good homemade, but I buy it to save time. You can buy several kinds and try them with different dippers and see what he likes! The Lundbergh wild rice cakes (not brown rice, wild rice) are actually really good. We use them lots of ways. They're good with almond butter, honey, and sunflower seeds for a sweet snack. They're good with hummus. We'll spread them with butter (shhh) and garlic and toast in the toaster oven to go with soup. You don't need bread.

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52 minutes ago, PeterPan said:

 

You don't need bread. Bread slimes the gut, causing the leaky gut that is causing the symptoms. Doesn't matter whether it's GF bread or wheat or whole grain or whatever. Bread just isn't necessary. Anything you're eating with bread should stand up as being worthwhile on its own. Give him the tomato and the salad and the meat rolled up cute or put the p-butter on celery.

I agree with this, but I do think removing gluten and dairy takes priority so that the child is more likely to eat the wide variety of foods necessary to have a healthy Paleo/Whole 30/etc. diet.

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I haven’t found the evidence compelling for GFCF diets for *all kids on the spectrum* and I have a child who was not in a position to lose any weight.  After consulting with a range of doctors, including multiple naturopaths we opted to not go this way for our autistic sons.  My older son started expanding his tastes when he turned 12 or thereabouts.  He’s still on the thin side of thin but that’s ok, so was my (not autistic) husband.  

If there are GI issues, I would have tried it but that wasn’t the case for my kids. 

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We did the Feingold diet with our kids to see if we could pinpoint issues and triggers.  ITA with the above point that it takes months to sort this out--this can't be a try for two weeks and give up thing.  Everybody has to be on board--anyone who may have contact with him needs to know he's on a special diet for a period of time. We had people at church try to hand our kids candy, we had to deal with playdates, etc. You have no idea how food-centered our culture is until you have to deal with food issues, iykwim.

The other bit I wanted to share is to not only look at food categories, but food textures. A lot of kids have oral tone issues and like starches (white bread, pastas, nuggets, etc.) that become paste-like in the mouth.  Other kids might like cold and sweet things. Some are really into crunchy things (popcorn, chips, carrots).  Of the family and friends in our circle with food issues, like 90% of them are in the limited range of foods and those foods are: white bread, pasta, chicken nuggets, and maybe yogurt.  You can use food chaining to expand those choices---you might choose a different brand of nugget, then move to chicken tenders, then move to homemade breaded chicken, then move to grilled chicken in nugget sized pieces (chik-fil-a has awesome grilled chicken, fwiw), then to marinated chicken breasts cut up, etc. From there you can jump to fish.... The idea is that gradual incremental change can take you a long ways....  

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7 hours ago, LucyStoner said:

I haven’t found the evidence compelling for GFCF diets for *all kids on the spectrum* and I have a child who was not in a position to lose any weight.  After consulting with a range of doctors, including multiple naturopaths we opted to not go this way for our autistic sons.  My older son started expanding his tastes when he turned 12 or thereabouts.  He’s still on the thin side of thin but that’s ok, so was my (not autistic) husband.  

If there are GI issues, I would have tried it but that wasn’t the case for my kids. 

FWIW, my special needs kiddo never had any obvious GI symptoms and she had tested negative twice for celiac (including the extended panel) and wheat allergies (including the extended panel). We had been told by the pediatrician that "well, SOMEBODY has to be below the 2nd percentile". Then when we tried GFCF after the autism diagnosis, within about 6 weeks she had gained 25% of her body weight. In 4 months she went from a size 18-24 months to a 4T (she was 2 yrs 11 mos. when we eliminated gluten & dairy).

Parents need to do what they feel is best for their own family, but I think the "don't take them off gluten unless there are obvious GI symptoms" notion is terrible advice for kids with autism.

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On 5/22/2019 at 2:49 PM, Crimson Wife said:

FWIW, my special needs kiddo never had any obvious GI symptoms and she had tested negative twice for celiac (including the extended panel) and wheat allergies (including the extended panel). We had been told by the pediatrician that "well, SOMEBODY has to be below the 2nd percentile". Then when we tried GFCF after the autism diagnosis, within about 6 weeks she had gained 25% of her body weight. In 4 months she went from a size 18-24 months to a 4T (she was 2 yrs 11 mos. when we eliminated gluten & dairy).

Parents need to do what they feel is best for their own family, but I think the "don't take them off gluten unless there are obvious GI symptoms" notion is terrible advice for kids with autism.

 

I’m happy it worked for you guys but I know many for whom much effort was exerted and no gains made.  The research doesn’t support this as being appropriate as a blanket recommendation for all kids on the spectrum.  My son was thin but tall and never at the bottom of the growth curve even while being very thin.  One provider recommended it with no exam or testing and completely blew off my concerns about eliminating calorie dense foods he would reliably eat.  I’m glad we got additional opinions and decided against it.  

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