Gluten-free/dairy-free - how strict do you have to be?

[Anonymous]

I have a 4 year old with HFA who had a dairy intolerance as an infant, plus chronic constipation. I never suspected wheat as an allergen, but I now have a younger child who has clear allergies to both dairy and wheat, so I'm wondering if my older child also has difficult with gluten. My older child definitely has major inconsistencies in his behavior, and I think some of the behaviors and the intensity of the behaviors are related to food.

Firsts question - for those with kids with ASD/ADHD/behavior problems, etc - did you find this diet helpful? I know this is strictly anecdotal, but I'd still like to hear success or failure stories since this is a lot of work.

Second question - how strict do you have to be? Clearly a glass of milk or slice of bread is absolutely not ok. But what about a meatball that has bread crumbs baked in? A vegetable sauteed in butter? Is even that amount of exposure too much?

Third question - how do you swap those foods? Of course, like most 4 year olds, carbs are his favorite food. I have been able to swap gluten-free pasta very easily, and he will eat quinoa and rice. I use soy milk instead of regular milk (I know this is not ideal as some kids can have soy allergies, but he won't eat meat and I need him to get protein somehow, and rice/hemp/almond milks have almost no protein). The 2 things I am having trouble swapping are bread (gluten free bread tastes very different than regular) and cheese. Any suggestions?

Thanks....

[Anonymous]

why don't you take the kid to an allergist to confirm? Then you'll know. For celiac people, it's nothing. You'd make my DH just as ill from a slice of bread as you would from two breadcrumbs in a meatball...as for things tasting different, that's the way it is. You adjust because you don't want to be sick

[Anonymous]

I'm 1023, is it possible that it's lactose intolerance in dairy? So milk is not ok but cultured dairy (yogurt/cheese) is fine. My DH is like that...so he eats lots of yogurt and cheese.

[Anonymous]

Anonymous wrote:why don't you take the kid to an allergist to confirm? Then you'll know. For celiac people, it's nothing. You'd make my DH just as ill from a slice of bread as you would from two breadcrumbs in a meatball...as for things tasting different, that's the way it is. You adjust because you don't want to be sick

I did. Skin tests are negative. GI allergies do not show up with regular allergy testing. And many people can have gluten sensitivities without having full-blown celiac.

[Anonymous]

Anonymous wrote:

Anonymous wrote:why don't you take the kid to an allergist to confirm? Then you'll know. For celiac people, it's nothing. You'd make my DH just as ill from a slice of bread as you would from two breadcrumbs in a meatball...as for things tasting different, that's the way it is. You adjust because you don't want to be sick

I did. Skin tests are negative. GI allergies do not show up with regular allergy testing. And many people can have gluten sensitivities without having full-blown celiac.

OP again - as for "adjusting", try explaining to a 4 year old with autism and language delays that he can't have a croissant but it will make him not feel good. This is not a neurotypical 16 year I am talking about here.

[Anonymous]

My child was diagnosed at 3. You just get used to the new rules. Make substitutions - go to Whole Foods or Giant and start paying attention to labels. The kids won't understand at first but you have to be in charge of their diet. Some entire families will make the change to make it easier, that way there isn't a pile of gluten and dairy-filled cookies lying around that he can't have.

[Anonymous]

I think very few people see any real improvement in neurological conditions with elimination of dairy and/or gluten. The people that did see real improvement are very evangelical about it, which I assume is because it made a huge difference in their life.

In my personal view, these conditions are largely diagnosed by symptoms, not by causation or even underlying neurological physiological markers. So my guess is that there are actually multiple conditions being called the same thing, or multiple causes for the same condition. For some small percentage of people, it may be food sensitivities.
Sort of like how 100 years ago there was just "cancer" -- now we know that cancer can be caused by environmental toxins or by genes, and that different types of cancer grow in different ways and respond to different treatments.

I think the only way to do it is the really hard way --- the old school total elimination test. Eliminate both for at least 3 days. (Some people say that you have to wait months to see a difference....I just don't know.) Add back in one. Etc.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:why don't you take the kid to an allergist to confirm? Then you'll know. For celiac people, it's nothing. You'd make my DH just as ill from a slice of bread as you would from two breadcrumbs in a meatball...as for things tasting different, that's the way it is. You adjust because you don't want to be sick

I did. Skin tests are negative. GI allergies do not show up with regular allergy testing. And many people can have gluten sensitivities without having full-blown celiac.

OP again - as for "adjusting", try explaining to a 4 year old with autism and language delays that he can't have a croissant but it will make him not feel good. This is not a neurotypical 16 year I am talking about here.

You have to do it as a family. No more croissants in the house.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:why don't you take the kid to an allergist to confirm? Then you'll know. For celiac people, it's nothing. You'd make my DH just as ill from a slice of bread as you would from two breadcrumbs in a meatball...as for things tasting different, that's the way it is. You adjust because you don't want to be sick

I did. Skin tests are negative. GI allergies do not show up with regular allergy testing. And many people can have gluten sensitivities without having full-blown celiac.

OP again - as for "adjusting", try explaining to a 4 year old with autism and language delays that he can't have a croissant but it will make him not feel good. This is not a neurotypical 16 year I am talking about here.

You have to do it as a family. No more croissants in the house.

I agree with doing it as a family. Our entire house is gluten free (son and I both are allergic to wheat) and no milk. Also, we did a blood test for the food allergies.

Any place we previously used butter, we now use oil or one of the Earth Balance spreads. Some brands of gluten free items are better than others. The gluten free Snyders brand pretzels are one of our favorite snacks. It takes time to find what you like but we have found that toasting gluten free bread is helpful. I get all sauces in gluten free, even if it is something my child won't eat, in case he decides he wants to try it. Schar brand has some good products but they are a little more difficult to find.

[Anonymous]

I have found that one of my kids cannot have casein -- yogurt is okay and but not milk or cheese. He knows that and understands, at 4. Or at least he mostly doesn't complain and doesn't get upset that his brother can have cheese. Alternatively, his brother cannot have artificial food dyes. He gets facial rashes.

I haven't noticed that avoiding dairy and food dyes has improved either of their behavior, but maybe it has and I didn't notice. It has improved their digestion and cured the "inexplicable" rashes.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:why don't you take the kid to an allergist to confirm? Then you'll know. For celiac people, it's nothing. You'd make my DH just as ill from a slice of bread as you would from two breadcrumbs in a meatball...as for things tasting different, that's the way it is. You adjust because you don't want to be sick

I did. Skin tests are negative. GI allergies do not show up with regular allergy testing. And many people can have gluten sensitivities without having full-blown celiac.

OP again - as for "adjusting", try explaining to a 4 year old with autism and language delays that he can't have a croissant but it will make him not feel good. This is not a neurotypical 16 year I am talking about here.

You have to do it as a family. No more croissants in the house.

I agree with doing it as a family. Our entire house is gluten free (son and I both are allergic to wheat) and no milk. Also, we did a blood test for the food allergies.

Any place we previously used butter, we now use oil or one of the Earth Balance spreads. Some brands of gluten free items are better than others. The gluten free Snyders brand pretzels are one of our favorite snacks. It takes time to find what you like but we have found that toasting gluten free bread is helpful. I get all sauces in gluten free, even if it is something my child won't eat, in case he decides he wants to try it. Schar brand has some good products but they are a little more difficult to find.

Thanks - totally agree with both posters about doing it as a family. I also like the Snyder's gluten free pretzels and the Earth Balance spreads. There are lots of good gluten free cookie options too.

I was not given the option of a blood test from the allergist, just skin testing. What type of blood test did they do? I know for celiac you can do a blood test but I didn't know that for regular GI intolerances there was a blood test option.

[Anonymous]

Anonymous wrote:I think very few people see any real improvement in neurological conditions with elimination of dairy and/or gluten. The people that did see real improvement are very evangelical about it, which I assume is because it made a huge difference in their life.

In my personal view, these conditions are largely diagnosed by symptoms, not by causation or even underlying neurological physiological markers. So my guess is that there are actually multiple conditions being called the same thing, or multiple causes for the same condition. For some small percentage of people, it may be food sensitivities.
Sort of like how 100 years ago there was just "cancer" -- now we know that cancer can be caused by environmental toxins or by genes, and that different types of cancer grow in different ways and respond to different treatments.

I think the only way to do it is the really hard way --- the old school total elimination test. Eliminate both for at least 3 days. (Some people say that you have to wait months to see a difference....I just don't know.) Add back in one. Etc.

There is simply no scientific proof it works to "cure" autism. But you are right, some people are very evangelical about it.


https://spectrumnews.org/opinion/reviews/going-gluten-free-unlikely-to-help-most-people-with-autism/

https://www.autismspeaks.org/science/science-news/study-glutencasein-free-diet-doesn%E2%80%99t-improve-autism-symptoms

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think very few people see any real improvement in neurological conditions with elimination of dairy and/or gluten. The people that did see real improvement are very evangelical about it, which I assume is because it made a huge difference in their life.

In my personal view, these conditions are largely diagnosed by symptoms, not by causation or even underlying neurological physiological markers. So my guess is that there are actually multiple conditions being called the same thing, or multiple causes for the same condition. For some small percentage of people, it may be food sensitivities.
Sort of like how 100 years ago there was just "cancer" -- now we know that cancer can be caused by environmental toxins or by genes, and that different types of cancer grow in different ways and respond to different treatments.

I think the only way to do it is the really hard way --- the old school total elimination test. Eliminate both for at least 3 days. (Some people say that you have to wait months to see a difference....I just don't know.) Add back in one. Etc.

There is simply no scientific proof it works to "cure" autism. But you are right, some people are very evangelical about it.


https://spectrumnews.org/opinion/reviews/going-gluten-free-unlikely-to-help-most-people-with-autism/

https://www.autismspeaks.org/science/science-news/study-glutencasein-free-diet-doesn%E2%80%99t-improve-autism-symptoms

OP here - should have been clear that I am absolutely not expecting a special diet to "cure" my son's autism. He has ASD, period, and always will. But I am hoping it will be help lessen some of his behavioral symptoms, and will help eliminate or reduce his ezcema and GI issues. Diet definitely impacts how I feel, and when I feel like crap I am moody and have low energy. I don't know why a child couldn't have a similar reaction if he doesn't feel well.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I think very few people see any real improvement in neurological conditions with elimination of dairy and/or gluten. The people that did see real improvement are very evangelical about it, which I assume is because it made a huge difference in their life.

In my personal view, these conditions are largely diagnosed by symptoms, not by causation or even underlying neurological physiological markers. So my guess is that there are actually multiple conditions being called the same thing, or multiple causes for the same condition. For some small percentage of people, it may be food sensitivities.
Sort of like how 100 years ago there was just "cancer" -- now we know that cancer can be caused by environmental toxins or by genes, and that different types of cancer grow in different ways and respond to different treatments.

I think the only way to do it is the really hard way --- the old school total elimination test. Eliminate both for at least 3 days. (Some people say that you have to wait months to see a difference....I just don't know.) Add back in one. Etc.

There is simply no scientific proof it works to "cure" autism. But you are right, some people are very evangelical about it.


https://spectrumnews.org/opinion/reviews/going-gluten-free-unlikely-to-help-most-people-with-autism/

https://www.autismspeaks.org/science/science-news/study-glutencasein-free-diet-doesn%E2%80%99t-improve-autism-symptoms

OP here - should have been clear that I am absolutely not expecting a special diet to "cure" my son's autism. He has ASD, period, and always will. But I am hoping it will be help lessen some of his behavioral symptoms, and will help eliminate or reduce his ezcema and GI issues. Diet definitely impacts how I feel, and when I feel like crap I am moody and have low energy. I don't know why a child couldn't have a similar reaction if he doesn't feel well.

It's a daunting task, though, to do strictly. No parties, meals out, travel is difficult as you have to bring foods with you, etc.

I wish I could find the blog where a doctor wrote about doing it strictly with his family for months and months, and they thought it was making such a difference, and then they went on a trip and they forget the food and just use regular foods and ... no difference. At all.

[Anonymous]

I'm with the PPs (I was the first PP with the celiac DH). A blood test can help but ultimately you need a colonoscopy/endoscopy and you have to keep eating gluten for the test to be accurate...Anyway, if you're sure, Is just go all GF for everyone. It's really not that difficult. It takes getting used to and you have to be a stickler about reading labels but...you'll get to the point where you'll bring a cupcake with you to bday parties so your kid can have one etc.