Do autism and gastrointestinal problems go together? Also, what to do about sleeping problems?!?

[luvumason]

   Hi, I am the mother of a three year old little boy with autism. Every since my little boy was a year old, he has had very frequent and lose bowels. My little boy does drink alot but, I dilute any juices half and half and try to give him water as much as possible. He also has a limited diet of chicken nuggets, fries, fruit snacks, pizza, oatmeal, pb and J, bannanas, and waffles. I guess what I am trying to say is, he won't try anything new and he doesn't eat veggies and only bannanas for fruit. About once a week his bowels get pretty bad and during the school year the teacher had to call me a few times to bring more clothes. I read that children with autism often have gastro problems but, I talked to his pcp about it and she says it's problems with constapation and not diaherria that they usually have but, she is going to take some samples. I haven't had a chance to talk to his nuerologist about this because, we don't see her for another month. Is his pcp right because, for what I read she isn't?!?!? Also, he just got where he is only sleeping a few hours, what can I do to help him and I rest???

[qwertyuiop123]

some kids who have celiac can not absorb the nutrition in the food they eat, so they are basically starving their brain of nutrients. So, think of how a brain would be affected by receiving little or no nutrients. I am not saying everyone with autism needs to go gluten free, however those with digestive symptoms should be tested for celiac, because they may not actually be autistic, they may just have celiac. The website I mentioned did say going gluten free could help with autistic tendencies, however that is the website's opinion, not mine. luvumason, i will keep your son in my prayers.

[888mom]

Diarreah is often treated by the BRATY diet... bananas, rice, applesauce, toast, and yogurt.  You could try to see if he'll let you add rice in as a food.  Not sure if he likes mixing food or not... my daughter loves chicken and rice soup, though I usually make it with veggies like carrots and celery (she will not eat a vegetable unless it is cooked totally mooshy in a soup form).  My daughter used to have problems with constipation, and still does occasionally and I do all the time (she and I both like to eat this blueberry oatmeal from Trader Joes that has 7 grams of fiber, and 4 grams of those are insoluable fiber which keeps you regular).  But, if he's having diarreah, maybe he's getting too fiber?  Or he just IBS.  My MIL has IBS and she gets a lot of diarreah and has her whole life.

I know how frustrating it is to try to add a food into your child's diet.  My daughter will only eat chicken nuggets that are Ian's brand (they are lightly breaded and have no trans fats and she will only eat them if I bake them and not microwave them), mac&cheese, chicken and rice soup (I have to homemake it myself and thoroughly cook any veggie that goes in), fish sticks, hot dogs, sweet potatoes, PB&J, pizza, yogurt, oatmeal, bagels, frosted flakes, and anything that is pasta (tortolini, spaghetti, ravioli, lasagna, etc).  She refuses to eat anything from McDonalds, Burger King, anything fast food.  I guess that's a good healthy thing... but if we're travelling and need to stop for dinner/lunch, it gets expensive to go to a regular sit down restaurant.  She refuses to eat french fries or any white potato.  

I have to make sure I rotate her diet enough because I find if I haven't given her a food item in a week, that food item will get refused to be eaten... so if it's like she forgot that she liked it... well, she used to love watermelon, but it's been out of season since last fall, and now that it's back in season, she won't touch watermelon with a 10 foot pole.  Ditto with cantelope.  It's so frustrating.  The only fruits that she will eat because they were affordable during the winter were apples and grapes.  Last summer she ate every single type of fruit in front of her.  *sigh*

[SueNYC]

My son (who is gluten intolerant) also has a lot of bowel problems.  I am excited that school ends next week because I know that he sneaks gluten there.  It wrecks havoc on his skin, he gets all glassy when he has had too much, and let us not talk about the runs.  O think you can usually tell if a child is having gastro-intestinal problems.  And yes, the blood tests were horrible because they took so many vials.

any number over 20 is considered gluten-intolerant by most allergist (Sam runs about a 30 when we aren't careful).  Enterolab does a stool sample - but there number is a lot lower (after 10 I think).  It does not mean that you have Celiac disease - think of it as more of a lactose intolerance.  True Celiacs hve an auto-immune disease and can not have any gluten. We also had Sam tested for the genes - which alot of us have - which if you have means you should be tested every 5 years to see if true celiac develops.

[Sally44]

I'm glad that you've actually found that there may be a 'cause' of the bowel problem.  Obviously, I'm not glad if that involves something serious or another diagnosis.  But at least you know you were right to be concerned and to question if there was something wrong.  Now it has been recognised and therefore something should be done.  Let us know what happens.

[margypops]

Sounds like your Doc is on top of it, I was going to say check your Boys medications ,I knew a boy of 3 who was given allergy meds ie Zyrtec for his runny nose, he got really severe Diarrhea within a few hours of taking it each time and also it was round this time or earlier at 2years old, that the Autism appeared, it also semed to trigger his moods and he would be very aggitated shortly after being given the Med. Just a thought I hope you get to the answer.

[luvumason]

Thank you to everyone. Just wanted to update you all. My son's stool specimen came back and the doctor herself actually called me and she said it shows malabsorpiton. (the body isn't absorbing nutrients into the blood stream properly) She wanted him to come in right away for a series of testing because, the leading cause for malabsorption in the US is cystic fibrosis. I have been a nervous wreck and can't believe my baby is going through so much, please keep him in your thoughts and prayers.

[Angela77]

If you decide to start any type of intervention, it would be best to track your  son's bowel movements before, during, and after you start anything.  For a week or so before the dietary changes you want to implement, write down the frequency, consistency, etc. of each BM your son has.  Then, introduce your plan (whether it be GF-CF or any other dietary changes).  Continue to write down the frequency, consistency, etc of each BM.  That way, you can see if your intervention is actually working.  Good luck.

[MJIthewriter]

I had a really nice long detailed reply, but *sigh* Opera decided to close out on me and I lost it all... So you're going to get a different reply than I first intended. Sorry.

Sally, I agree with your point on autism. I believe biomed stuff should not be taken as first line of defense... A little bit of autism is NOT bad. I believe that the autism spectrum is better extended to contain everyone.  On either extreme is likely a disability.  In the middle, that is where most people are. At some point, someone somewhere decided to cut it off and call anything beyond that point a handicap.

Whatever "cause" is likely within the same range so if you believe autism is called by digestive problems, likely those digestive problems affect a variety of people and affect their behavior.

I am coming to believe whatever makes us unique and affects our perspective is possibly the result of some defect.  I don't care what it is. It's there and in varying degrees.  If you look up some animal genetics, you may be surprised some of the "prettiest" colors for dogs are also semi-lethal. White and merle are a couple. I was even reading up on a website that thought that bi-colored animals may be the result of the skin tearing apart in the fetal stage and being replaced with scar tissue.

If such a case was true then your cute bi-colored pet happened to be that way because of a flaw.

Red hair for many people is also the result of a flaw. The body fails to produce a brown form of melanin. Without that, then such people are left with the red form and prone to sunburn and skin cancer. We think red hair is pretty. I do too.
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As far as treating autism goes, it's a judgment call. It's a matter of how much of oneself do you really want to give up to fit some kind of mold.  I don't care what is considered "normal". I think society is flawed.

On the other hand if something is interfering with the quality of life for a person, they should be able to choose what they want to reduce the problem.  For parents, this means it has to be done for the child's best interest, not what the parent thinks is for their child's best interest, based on their own personality and beliefs.

For instance a highly social outgoing mother may think her introverted daughter who rather sit by herself coloring books or drawing than socializing is suffering because she has no friends. The mother may feel so, but the child may not. Perhaps the child throws a tantrum when put into crowds.  The mother may think there's something seriously wrong. The child may think there's something wrong with the mother for forcing her along with such events.

A good example:  Just for the heck of it I thought I'll try a high school dance. It seemed to be the kind of "fun" that so called "normal" people had.  I guess I was hoping I would find the same fun. Nah... I was bored. I talked with a few friends but still it didn't turn me on.

On the other hand I enjoyed the conservation club and the experiences of canoeing, being out in nature and helping the environment in some way.

That being said:  qwertyuiop123, I believe such people who share the viewpoint in your post are seriously overreacting!  I haven't observed it myself, but I know from my personal experience that if I noticed just the slightest bit of anxiety from my parents, that affected my mood and behavior than eating a slice of bread or applying chapstick/lotion with a trace of gluten in it.

[qwertyuiop123]

Some kids who are believed to be autistic actually just have celiac. Also, celiac can cause problems because it can cause the intestines to not be able to absorb something such as medicine if he were to get sick. Also, does he drink milk? Could he be intolerant? If he wouldn't tolerate a needle, maybe you could just try taking gluten out of his diet... or not i think that would pretty much leave bananas lol what a picky eater! If you were to try taking him off all gluten remember that it can take time to see results, and once he stops eating gluten the test for celiac would come back negative. There are some stores that will sell things like waffles that are gluten free the only one i can think of is trader joes. Also, if you do try to take him off gluten, if his food touches anything with gluten in it it could be enough to cause a reaction. Also, I read somewhere that taking people with autism off of gluten can alleviate some of their autistic tendencies.

here are a few websites:

www.celiac.com/

http://paleodiet.com/autism/

[Sally44]

Regarding sleep, the nutricianist may also be able to give some advice on foods to avoid or to introduce.
Do you have him in a bedtime routine.
What is the sleep problem.  Is it a difficulty getting or sleep, or is he going to sleep but then waking up?
Depending on sensory issues, some children find a weighted duvet helps keep them asleep in bed.
If he hearing can be hypersensitive you might consider reducing noise as much as possible.
If he is fearful of the dark you could have a dimmer switch and just turn down the lighting a little.  He could also choose a cuddly toy that will protect him.  My son uses 'sharky'.  This is a shark (of course), who is very friendly to my son, but who will attack anything coming into his bedroom to scare him.
If he is scared of monsters etc you can use Social Stores to explain that monsters aren't real.  Remember they take things literally, so if they have read/seen something scary about monsters/vampires etc on TV they will be scared it could happen to them.  Obviously he is only 3, so he's more likely to be scared of the dark - but it is worth remembering.
If he is quite inactive you might consider introducing some kind of early evening exercise to use up some energy and release those relaxing hormones.
If he is hyperactive you could introduce something more useful like a trampette early evening and then begin to wind down the activities as he nears bedtime.
It also boils down to how much supervision does he need.  I know he is only three so he will need a lot.  But when my son was that age and he woke up, I used to go into his room and put a video on and sleep next to him in his bed.  I would make sure the windows and bedroom door were locked (they always have to be anyway).  That way I would grab another hours sleep and he would be doing something he liked in a safe environment.  It's not ideal, but sometimes you just have to work with what you've got.  And he has improved as he has got older.
If it is continual severe sleep deprivation then you need to look at medications.  Sometimes these children are short of the sleep hormone (can't remember what it is called) and you can get this from the doctor.  
But I tend to be very wary of introducing medications because alot of children/adults have side effects to medications and when it involves medications for conditions that are in themselves indicating a different brain function eg. autism/bi-polar/developmental delay etc the side effects can be worse.  And if we are giving them to children who cannot express their experiences because they are unable to do so.  How do we know if they are feeling better or worse?  They could be feeling comatose and that would make them sleep more, but it is not a desirable way for them to be feeling throughout the day is it.  On the other side I have spoken to parents with ADHD, whose children also have ADHD and they say that the medication has helped them (parents) to function.  That being the case they are right to use it for themselves and it is understandable that they want to try it on their children who are showing the same difficulties that they had.

[Sally44]

As you've said they can carry out a blood test for celiac disease - but how would your child be about that.  I know I couldn't put mine through that, we would have to sedate him with gas to get a needle in him!  I don't know that there are any 'proven scientifically' testing for intolerances.
I have sent my son's urine to be tested for peptides (proteins that should be broken down by the body and should not be present in the urine), and his came back positive for casein and gluten.  But there is argument about whether these test results indicate anything.
I have read your post a couple of times and have been thinking about what would be a logical approach.
Firstly I would look at your immediate family history, as you have done, and sum up does that increase/lessen the chances of him having some kind of intolerance.
As he already doesn't have milk that rules out casein.  Apart from the loose stools does he get any other symptoms you suspect as being from food eg. headaches/migranes, rashes, stomach ache etc?
The other main food labelled as causing problems is gluten.  Nowadays it is quite easy to get gluten free chicken nuggets/fish fingers, bread etc.  So you could introduce that.  And as he is so fussy about food you could swop over slowly, maybe replacing one food item per week gluten free.
It might also be helpful to get some advice from a nutricianist.  You could ask for a referral through your Doctor, and get some advice on his diet to be sure he is getting everything he needs eventhough his diet is restricted.  Or you could try to find one (preferably with experience in autism) privately and pay for advise from them.  Afterall you would only need to see them every couple of months (if that) to begin with until a dietry regime was in place and you were happy with it.  Then you might only have to go every six months or once a year.
You may even be able to get some advice through a special autism unit at a special school, because they frequently have these problems and will have ways to try to introduce new foods.  It maybe that they get this programme from an Educational Psychologist - but at least you will find out who actually deals with this area.
I am casein and gluten intolerance myself.  I have Fibromyalgia - not autism.  There is also a family history of allergies and intolerances to food and medications.  For that reason I put my son on the CF/GF diet.  I also reduced sugar and introduced probiotics as it is suspected that alot of children have yeast infections, as I did.  There are dairy free versions.  Then you have to sit and wait and see what happens.
Do I think there have been some improvements.  Yes.  Do I think it is down to the diet.  I don't know.  Would those improvements have happened regardless of dietry changes.  I don't know.
However I have noticed that he is not so rigid about the types of food he will eat.  Before his preferred meal was a cheese sandwich and a glass of milk.  He can't have any of that now.  He has been more receptive to trying and including new foods.  He is now eating lettuce salad!  And baked beans (although he doesn't really like the texture).  But his variety of foods has improved.
If he is going to a party I let him eat what the rest of the children are having.  
I suppose I am trying to see if there are positive results from something that is not so invasive or punative.  I definately wouldn't go down the route of injections and serious medications.  I would prefer the autistic behaviour to that.  But having said that I am not dealing with a non-verbal severely autistic child/adult.
When he is an adult I will let him decide if he wants to try anything else.  I think you have to draw the line somewhere and accept that autism is part of who they are otherwise you are always trying new ways to 'eradicate' it.  I know not everyone agrees with that opinion.  But they have to live with their decisions as I do.  So I would say it is down to personal choice, but would you want someone to put you through what you are willing to put your child through (also factoring the autism into the equation and what their understanding of what is being done to them is)?  If the answer is yes, then go ahead.

[luvumason]

  Thanks for your help! He has been tested for allergies and he's not allergic to any type of foods...just dust mites, and grass. I don't think he has been tested for any type of intollerence though but, I hope this leads to that because, I myself can't tolerate milk but, he does'nt drink milk and also, when I was a child my allergy test showed that I was allergic to gluten but, his didn't. I am wondering about celiac because, in research I have read that alot of autistic children have this and can't tolerate the gluten. I don't find that eating gluten has had any kind of reaction on me unless it makes my stomache swell from the inside and I don't know it because, I do have a pudgy stomache lol. Like to try to blame it on other things besides being over weight. As far as the meat flavored toothpaste goes...yuck lol!

[MJIthewriter]

As far as sleeping goes...  That I'm looking for help with too... I find if I try to visualize things in my head, it does seem to make me drowsy at times, especially if keep the room dim.

Problem is once I brush my teeth, then I lose that tired feeling... I'm beginning to suspect there's some kind of sugar in regular tooth paste...  It seems to perk me up, which may be soemthing to consider for the morning, but not for bed time...

I could brush with pet toothpaste. That may lack certain chemicals that are in "human" toothpaste, but something about brushing meat flavored paste over my teeth turns me off...

[MJIthewriter]

To be honest I don't know. It seems to be common with some people but not everyone.  Some people seem intolerant to gluten and casein and removing foods with those from their diet may help.

Most sites I visit seem to claim it's not been proven, but other sites you can read quite a few testimonials...

I think it depends... If there is a food intolerance, it will cause indigestion, which could make things worse for anyone, not just autistic people. But with the lack of communication, it makes it harder because your boy probably can't tell you if he is hurting with stomach cramps or cramps.

With your son it could be a food intolerance, a stress issue, lack of a balanced diet, or all of the above. I don't know. I'm no expert.

I suspect it may be a form of IBS. You can try looking that up to see if anything sounds familiar. With that in mind you can try testing for food allergies and intolerances. If anything shows up, eliminating those from the diet may help.

Or if it is a minor case sometimes just cutting back on such foods may help.