Autism/Aspergers and Inborn Errors of Metabolism

Post Reply New Topic

Hi it's Jackers.

I know metabolic disorders are not psychological but I did not know where else to post this.

In addition to Asperger's and Nonverbal Learning Disabilities I was born with an unclassified inborn error of metabolism. Examples of inborn errors of metabolism are PKU, Maple Syrup Urine Disease, Homocysteinuria, various forms of Organic Acidemias and Fatty Oxidation Disorders such as MCAD Deficiency.

Mine manifests itself when I am sick with a fever or stomach flu or have intense exercised without eating within a 4 hour time frame. It would also manifest if I were ever to fast for 15+ hours or to partake on the Atkins Diet (I wouldn't). I develop severe ketoacidosis with normal to low blood sugar. If it gets real bad I can find myself in the hospital for several days. I take prescription L-Carnitine so that it is less likely to occur as well as a well developed medical plan if I were to get sick and start vomiting.

As a child I was of keen interest by doctors to see if my metabolic disorder had any correlation to my having learning disabilities and Asperger's. I doubt that it is a cause, but my medical disorder helped me qualify for the services I have now such as support to live on my own and job support services. I was curious to see if anybody here has any metabolic disorders or even food allergies or celiac. I was also curious as what people do nutrition wise to have a more healthy balanced diet and if autism plays a role in the way people eat.

I have Aspergers and Crohns, however, I am pretty sure these two are unrelated.

The hardest thing is food texture, I hate most foods, and fitting any diet (like a gluten/dairy free I am on) is extremely hard when I normally only eat about 10 foods unless being forced.

.... Then again, I don't think I am a very good test case for you, sorry.

I think of it as a stomach flue, or a sinus infection that won't go away. I go on low glycemic foods, when I need to clear my head, and get quick results.

This does not work, when I do not eat these foods, in proportion to my body's caloric needs.

I've always thought there was something wrong with me digestively all along, whether it's something like an intolerance. When I was a kid, my family didn't have a lot of money, so we would eat these cheap rubbish foods like hamburger helper and such. I would get horrid horrid constipation where I'd be stopped up for a week or two, alternating with diarrhea if I ate the foods that my body hated even worse. My pediatrician, after countless stool samples and such, put me on some weird thing like having a tablespoon of mineral oil a day, and in addition to not solving my constipation issues, it also made me sh*t my pants with oily orange stuff so I had to wear a sanitary pad at age 7, which did nothing to help my confidence in the end.

I used to think that I just outgrew my issues, but honestly, looking back, when things started improving, was when I started eating better quality food. I stuck to those foods, because you're going to eat foods that don't make you feel sick, obviously. Over time I've learned to shy away from enriched crap and low-fat dairy crap because they make me feel worse. And I avoid hfcs as well, because that makes me feel bloated and gives me bad gas. I also cannot do the fortified fiber crap either. That's like instant diarrhea for me (which is why I've avoided wheaties and uber-fortified cereals like the plague).

My digestive system-- It's like that golden egg machine in the willy wonka movie. It knows a bad egg when it sees one. The minute I knew I ate something "wrong" I know it.

Two other aspies I'm good friends with also have digestive issues. One has had to have a section of his colon removed and has to have a bag (I haven't heard the whole story on this though, I just know that much, and that some foods he cannot absolutely eat). The other has been battling terrible health issues and suspects that he has undiagnosed Crohn's as well (he struggled with other things like getting out his gallbladder when it was so enlarged that it was bigger than his stomach by the time they found it, and he developed sphincter of oddi dysfunction, and even though the sphincter exploded when it was opened because it was so full, even operating on that didn't fix things for him because nearly every time he eats-- grains in particular, he's still in tremendous pain).

Hi Jackers - I tried to message you privately but wonder if you received it?

Yesterday I got a message from a friend who lives abroad. She has had difficulties accessing the Wrong Plane site, and asked me to message you on her behalf. [I am in UK]

She believes her adult son has a condition similar to yours and she is desperate for info. He also has Asperger syndrome.

Her questions are:
Do you live in the UK?
Were you diagnosed as a child or adult and who manages your condition as an adult?
If you were diagnosed as an adult in the UK, who did it?

Hope you can help her.
All the best
Seonaid

Hello all. please help if u can. i have read tbat a celiac and gluten free diet is good for AS. all my life i have hade extreme difficulties with gluten profucts. while i was a young child i used to vomit nigjtly. the dairy does not bother me so much. i believe it has somrthing to do with my blood type...i have done some reading up on thid. but gluten is something i need to eliminate from my diet. although i no longer vomit, my AS Metabolism seems to absloutely dezpise wheT lroducts. what should i do to be healtby? i have bone disorders that run in my family and plan to take calci supplements for this, howevet i know the gluyen is hurting my stomach. i am living off of food stamps and loe inc. please help if u can. i am AS and lowet clasd financially. thanks.p.s. i appologize for the spelling i am using an android phone. lol.the "smart" phone tries to "correct" my spelling. wtf lol. i Appreciate anyone's input onthis topic !

A friend of mine has Asperger's and was diagnosed in a hospital with an immune defect (they are not sure wich one it is).
I believe there is a connection somehow in some cases between psychy and body.

There's definately some good info in this thread. Srry to bring up finances...lol. I'm not devistatingly poor or anything like that and wasn't trying to whine. I'm just trying to figure out an affordable way to eliminate the "crap-foods" from my diet. An affordable gluten free diet... it seems a lot of ppl have similar intolerances to these kind of foods. i found some useful info on the livestrong site. i guess getting a book on this would be of the most help. But reading similar posts I'm definately thinking its the gluten and celiac that's hurting my stomach.

Well, I do know there are some IEMs that cause autistic traits. PKU kids, if they don't get a low phenylalanine diet, will usually be low functioning autistic.