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Food intolerances and behavior issues...help! - Page 2

post #21 of 43

yes, we just did the regular scratch testing.  We centered it on foods, since that was my primary problem.  We got a lot of them, then tested for environmental things later.  Over the years, we have figured things out by process of elimination.  (i.e. I am not allegic to cats, but had a reaction one time petting a friends cat.  Turns out it was an indoor/outdoor cat, so I was probably reacting to the grass pollen on the cat's coat.  I personally avoid beef altogether, and onl eat organic poultry and fresh caught seafood (I live close to the ocean so it is not a problem).  It was also drilled into me as a child to never eat anything if I could not identify the ingredients (to this day I still won't eat a casserole).

 

I actually went through allergy shots for the environmental allergens that could not be avoided.  I know some people really hate the concept of allergy shots, but our goal was to get my eczema under control and to not have to take allergy meds every day for the rest of my life.  It worked, I my eczema is clear most of the time, I am off inhalers, and I only have to take benadryl when I need it.  I also had a wonderful allergist from south africa who understood that the goal was first control and comfort, and eventually to be able to maintain that off daily medication.

post #22 of 43
Thread Starter 
Just wanted to say THANK you all so much... I will be back to reply as soon as I can get on my computer. My phone is being a little wonky.
post #23 of 43
Thread Starter 
Quote:
Originally Posted by fizgig View Post

I have lots of thoughts, hope a few are helpful.  Just so you know, our DS has terrible reflux (on prevacid from 2-11 months), has a number of food allergies and intolerances, and has a few delays (primarily language). 

 

1. Just a regular old fashioned skin prick allergy test made a HUGE difference for us.  I tried a series of elimination diets and have realized that, because it take SO long for foods to truly leave the system, it is almost impossible to do it well for long enough.  So, for example, DS was getting really bad eczema and I went off a series of suspected allergens for 6 weeks each.  The eczema faded in and out and we just couldn't tie it clearly to a specific food.  The allergy test showed a massive reaction to egg (which I had cut out for 6 weeks and it didn't seem to help that much).  We cut all egg again and 3 months later his skin was 100% clear and he clearly felt so much better. 

 

2. I would ask to have a blood panel done looking for vitamin and mineral absorption problems.  Especially since he was on zantac which is increasingly associated with vitamin B absorption issues.  I am now sort of convinced that a lot of our DS's current tummy problems were created by the prevacid.  I don't think we had a choice, he needed the meds, but I really think it totally messed up his intestinal balance.  We have been doing pro-biotics and trying to eat lots of good gut foods (sourrkraut etc).  It has definitely helped with his stomach. 

 

thank you!  nak... anyhow that is very helpful!  i will look into the zantac thing.  i didn't know that.  in 2009 when a research study on malabsorption came out, i had ds's vitamin d, zinc, and something else tested and they were all normal.  i really wanted to have him looked at again though because i never asked to see the labs and i'm wondering if they were actually on the low end of normal and am also curious where they're at now.  he was still nursing then and i wonder if that makes a difference.

 

that is really good to know about the skin test too.  there are certain foods that i'm allergic to mildly where my only symptom at times is that my ears itch, so its possible that ds is reacting to something that we aren't noticing.  what probiotic do you use? 

Quote:
Originally Posted by melissa17s View Post

I think the bucket is a good analogy, too.  I have had times were I know I over did it with something like dairy that I can have in limited quanities.  Other things like egg whites and corn are pretty much never.  

 

Quality also makes a difference.  I am vegetarian, but I have found although I have an allergy to milk (I think it was to the whey or protein) I can handle organic, grass fed cow's milk/dairy better than conventional.  I was told by someone that meat, which always left me feeling ill has traces of what the animal ate in it, so since I am intolerant of corn and that is common in cow feed, I think I might react.  Also, some, but not all chickens have albumin in the muscle, which can be like egg causing a cross reaction.  

thank you!  i've always wondered that about traces of foods in meats...  good to know!

 

heather or anyone who might know the answer to this... just before dinner we started with one zyme prime digestive enzyme.  ds ate, laid down, and went to sleep literally 7 hours earlier than normal and by himself which never happens.  insomnia and lack of sleep are two of our biggest issues.  coincidence?  ive never heard of enzymes doing this but i cant tell you how odd it is that hes sleeping.  thanks everyone and sorry to be nak.  i know its annoying to read.

post #24 of 43
Thread Starter 
Quote:
Originally Posted by anj_rn View Post

yes, we just did the regular scratch testing.  We centered it on foods, since that was my primary problem.  We got a lot of them, then tested for environmental things later.  Over the years, we have figured things out by process of elimination.  (i.e. I am not allegic to cats, but had a reaction one time petting a friends cat.  Turns out it was an indoor/outdoor cat, so I was probably reacting to the grass pollen on the cat's coat.  I personally avoid beef altogether, and onl eat organic poultry and fresh caught seafood (I live close to the ocean so it is not a problem).  It was also drilled into me as a child to never eat anything if I could not identify the ingredients (to this day I still won't eat a casserole).

 

I actually went through allergy shots for the environmental allergens that could not be avoided.  I know some people really hate the concept of allergy shots, but our goal was to get my eczema under control and to not have to take allergy meds every day for the rest of my life.  It worked, I my eczema is clear most of the time, I am off inhalers, and I only have to take benadryl when I need it.  I also had a wonderful allergist from south africa who understood that the goal was first control and comfort, and eventually to be able to maintain that off daily medication.

thank you :).  i used to do the allergy shots too.  they were really seeming to help but i developed two autoimmune diseases while doing the shots and became suspicious that they may have been the cause.  like everything else, there is no solid research on that, but my ANA is so high now and these new autoimmune issues are affecting my quality of life more than my allergies were so i've stopped them.  its a bummer because being on allergy meds is difficult too.

post #25 of 43
Quote:
Originally Posted by APToddlerMama View Post

heather or anyone who might know the answer to this... just before dinner we started with one zyme prime digestive enzyme.  ds ate, laid down, and went to sleep literally 7 hours earlier than normal and by himself which never happens.  insomnia and lack of sleep are two of our biggest issues.  coincidence?  ive never heard of enzymes doing this but i cant tell you how odd it is that hes sleeping.  thanks everyone and sorry to be nak.  i know its annoying to read.

 

I've honest-to-God never heard of that, either.  Usually enzymes give them more energy because it frees up the body from some of the energy used in the digestive process.  How was he when he woke? (and when DID he wake?)  

 

I almost wonder if his sleep issues had to do with undigested proteins settling in his nervous system and causing an underlying sensory issue that toyed with his ability to rest; but I don't think I'd have imagined a single dose of enzyme to produce such a profound effect so quickly.  If there were no negatives in his behavior, I'd probably keep them up and watch him.  If he continues to sleep well for a week, I'd take him off of them for a week and see if it goes back to being disrupted and then start them again to definitively tie it to the enzymes.

post #26 of 43
Thread Starter 
Quote:
Originally Posted by heatherdeg View Post

I've honest-to-God never heard of that, either.  Usually enzymes give them more energy because it frees up the body from some of the energy used in the digestive process.  How was he when he woke? (and when DID he wake?)  

I almost wonder if his sleep issues had to do with undigested proteins settling in his nervous system and causing an underlying sensory issue that toyed with his ability to rest; but I don't think I'd have imagined a single dose of enzyme to produce such a profound effect so quickly.  If there were no negatives in his behavior, I'd probably keep them up and watch him.  If he continues to sleep well for a week, I'd take him off of them for a week and see if it goes back to being disrupted and then start them again to definitively tie it to the enzymes.

So strange. He slept 2.5 hours and the woke up on his own. I honestly was getting worried they were tainted or something. I mean, seriously, this kid doesn't sleep. I bought them off Amazon instead of direct so i got a bit paranoid. I am now laying in bed with him waiting for the melatonin to kick in. He was groggy and crabby for the first 20 min he was awake and then in a good mood. Had another enzyme with a snack and it seemed to have no impact. We will see I guess....
post #27 of 43

Hi.  This thread has some fantastic info.  Thank you to everyone you took the time to share their stories!

 

I wanted to share a couple links that might be helpful.  The information is related to health issues and autism, however there are many individuals without autism who could benefit from the info:

http://www.enzymestuff.com/ (great site and has a lot of info re the role of each enzyme and other topics related to a good healthy gut)

 

http://www.autism.com/pdf/providers/adams_biomed_summary.pdf  (provides great info re the role of enzymes, probiotics, supplements and other biomedical and dietary interventions used by parents)

 

http://www.autism.com/index.php/video/c/nutrition  (Webcasts re Special diets; on the left side of the page there are links to other webcasts that discuss behavior and gut)
 

post #28 of 43
Thread Starter 
Thank you Buttercup! I'm going to check them out right now. We started using enzymes and I think they're helping quite a bit. Will be interested in reading more smile.gif.
post #29 of 43
Thread Starter 
Just wanted to post an update. It's hard to say for sure what has made the huge improvement for ds, but in the past week, he's been a totally different kid. We still have corn, potatoes, citrus, and coconut out of his diet (have added sals and fish oil back), and have been doing Epsom salt baths very day and digestive enzymes. So, one or all of these things is helping a lot. He's tantruming and raging probably 5% of what he was before. Yay! Thanks everyone for your help!! Ill try to update as we add foods back in too. We are also having allergy testing done next month.
post #30 of 43

Did his digestion also improve with his behavior? You had noted before that his stools had been filled with undigested food. I'd be curious to know!  Curious too how you threw epsom salts into the mix.  He would be absorbing magnesium from the salt baths, a natural relaxant, calming agent, and histamine reducer....the epsom salt absorbs toxins as well.  Did you do this on instinct?  Great idea!

 

It is interesting isn't it how dramatic the improvements can be. I wouldn't "mess" with it though if I were you by reintroducing foods right now. Get comfortable living in the "new normal" for a while.  Over the years, i've seen for us, that there isn't just "one" thing, or "one magic cure all".  ASD has multifactoral causes and health, digestion and allergy issues that walk along side that either make worse or even cause symptoms.  If it is working, keep doing it.  Even if he can eat some of these removed foods why take a chance right now. 

I also just want to commend you on your determination to figure out how to help your child.  He's a lucky guy and you're a great mom!

post #31 of 43

VERY, VERY, VERY HAPPY FOR YOU!!!  joy.gif

post #32 of 43
Thread Starter 
Quote:
Originally Posted by heatherdeg View Post

VERY, VERY, VERY HAPPY FOR YOU!!!  joy.gif


Thank you smile.gif. I really appreciate all of your help once again.
post #33 of 43
Thread Starter 
Quote:
Originally Posted by livinglife View Post

Did his digestion also improve with his behavior? You had noted before that his stools had been filled with undigested food. I'd be curious to know!  Curious too how you threw epsom salts into the mix.  He would be absorbing magnesium from the salt baths, a natural relaxant, calming agent, and histamine reducer....the epsom salt absorbs toxins as well.  Did you do this on instinct?  Great idea!

It is interesting isn't it how dramatic the improvements can be. I wouldn't "mess" with it though if I were you by reintroducing foods right now. Get comfortable living in the "new normal" for a while.  Over the years, i've seen for us, that there isn't just "one" thing, or "one magic cure all".  ASD has multifactoral causes and health, digestion and allergy issues that walk along side that either make worse or even cause symptoms.  If it is working, keep doing it.  Even if he can eat some of these removed foods why take a chance right now. 
I also just want to commend you on your determination to figure out how to help your child.  He's a lucky guy and you're a great mom!

Thank you for your kind words smile.gif. You're right... We are going to wait for a bit to introduce anything. The Epsom salts were just something easy to try and I had heard of it on here. His digestion has definitely improved with his mood. Strangely, he had a couple bad moody days, and digestion was also off those days. I couldn't figure out why.
post #34 of 43
If it happens again (moody and digestion off) write down what he ate. Get ingredients.for everything. Post it here if you don't see the problem foods. I'll bet it's something already identified that's hidden.
post #35 of 43
Thread Starter 
Quote:
Originally Posted by pek64 View Post

If it happens again (moody and digestion off) write down what he ate. Get ingredients.for everything. Post it here if you don't see the problem foods. I'll bet it's something already identified that's hidden.

The weird thing is he definitely didn't eat anything different. We've been doing a restricted diet of some type with him for almost three years and literally he eats nothing that hasn't been cooked from scratch so I just don't know what it could have been. I've never been able to get a really good handle on whether or not he's sensitive to sals but I don't think he is. Maybe that was part of it though...too many berries at a time? I don't know because he has been fine with that other times.
post #36 of 43

Yes, you may be right...it probably is that he ate a little too much of something he can only eat in moderation or small amounts like salycilites...

 

It may also be that he will gain a much higher tolerance level over time as you supplement him and his digestion improves enormously.  I forget, are you giving him probiotics.  If not, that is a must, or if he will eat or drink fermented foods, even better.  My kids love Kombucha because it is fizzy like soda.  You can get trillions of probiotics in just one serving of fermented foods (raw sourkraut, Kimche, raw pickles raw  relish etc).  I like the bubbies brand for raw fermented veggies and we buy Kombucha from whole foods)

 

It sounds like you guys are doing so much better.  I know how much determination it take to stick with it. 

post #37 of 43

You also need to remember that a low salycilite diet needs to be looked at as food taken in over the course of the day, sometimes over the course of a few days.  The goal is to eat a low to moderate amount of salycilites and to add it up over the different foods eaten.  It may be that berries on day one are fine because he ate few other salycilites, know what I mean?  If he really likes berries and he may be sensitive you have to balance intake with other foods eaten.  There are also food strategies you can use to help the body rid or digest the salycilites faster.  Feingold's book talks about this...it's been a while since I read it, or used the suggestions, but I think people have used a spoon full of peanut butter if you think a child is having a reaction to salycilites.  (Something about the high fat/protein content helps the body metabolize)

post #38 of 43
Thread Starter 
Thank you livinglife! So much helpful information! We have been doing probiotics, but honestly of everything we are doing, it's the one thing I frequently forget, mainly because I don't think I'm supposed to do them at the same time as the enzymes so I forget even though I have a note taped to my fridge.

So would any raw pickles provide probiotics? Like something off the grocery store shelf? I have the Feingold handbook so I'll have to look into the peanut butter thing, though he has a peanut allergy supposedly so i would have to find something similar. Thanks again smile.gif.
post #39 of 43

Hey, no problem for the info...when my son was three I remember the feeling of working so hard to get a handle on what helps.  As for eating "raw" fermented food it is even preferable to probiotics and can replace them due to the high amount of naturally occurring probiotics per serving in raw foods.  Read the label.  It has to be refrigerated, fermented, non pasturized raw pickles.  They have the same sour taste but it's achieved without using vinegar but with fermentation.  Cool, huh?  Leaving cucumbers in a dark vat with water and salt makes them taste very sour and creates TONS of lactic acid and naturally healthy bacteria.  It's the way that our ancestors used to eat because it preserves the fall harvest to last through the winter.  One of the reasons we are not as physically robust anymore is because we've stopped eating these kind of raw foods and have replaced them with vinegar soured food.

 

Take care!
 

post #40 of 43

I hope it's okay for me to jump into this thread. I wanted to share that I give my kids L-carnitine. While they are not officially diagnosed with hypotonia, both of their physical therapists said they are on the very low end of "normal." Within a month of starting them on L-carnitine, each of their PTs (and their PTs didn't know each other) noticed huge improvements during their therapy sessions. We noticed more confidence and less reluctance to try more physical activities. Within 2.5 - 3 months, my son "graduated" from PT. We (as a family) had been on the GAPS Diet for almost a year at this point, but it wasn't until we added the L-carnitine that their PT sessions improved dramatically. Initially, I started my son on it because I thought it would help with oral motor muscle-building and help him speak clearer, but when his gross motor skills began to improve, I started giving it to my daughter as well. Both are doing very well (physically) on it.

 

Kelly Dorfman, author of What's Eating Your Child? has some information about all of this on her site: http://www.kellydorfman.com/images/Low_Muscle_Tone-website_1_.doc

 

GNC sells at least two versions of L-carnitine. The one we buy has only L-carnitine in it. The other ingredient is the gelatin for the capsule. I open the capsules and pour each of my kids' amounts into their daily smoothies (along with cod liver oil, probiotics, and CoQ10). CoQ10 is supposed to complement the L-carnitine. Vitamin Shoppe carries a brand that only has CoQ10 (and no fillers). We broke the bottle for it a while back, so I can't remember the brand (sorry!). By the way, every so often, GNC offers sales on the kind we buy. Keep your eyes peeled for that in case you decide to give it a try.

 

I second the probiotics suggestion. We eat a little sauerkraut (Bubbie's is delicious if you don't make your own) before lunch and dinner (and sometimes with breakfast), pickles, and yogurt (when I'm making that), and drink kombucha, water kefir, and dairy kefir. We also take a probiotic (Biokult). My son doesn't care as much for kombucha (depends on how the batch turns out), so I add it to their smoothies. Mwuahaha!

 

Also, on non-bath nights, I rub magnesium cream on my kids (since they aren't having an Epsom salts bath). Magnesium is amazing!

 

I hope all continues to go well for you and your son!

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