Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Asperger's And Gluten Intollerance (but Not Celiac?)


imagine22

Recommended Posts

imagine22 Contributor

I have read of links between asperger's and celiac but are there links between people carrying the celiac gene but who dont actually have celiac and asperger's?

I have celiac and I have a brother and a cousin with asperger's. My brother tested neg for celiac in the blood test. Im wondering if their issues are caused by gluten even if they dont necessarily have celiac.

thanks.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GFBetsy Rookie

It is quite possible that his problems are at least contributed to by gluten. You could look at the website www.gfcfdiet.com for more information.

Ursa Major Collaborator

I have Asperger Syndrome. Going gluten-free has not made me any less autistic, but it has greatly helped with meltdowns. I only get those now when I have been glutened.

I don't believe that celiac disease causes AS, but rather that autistic people are more prone to having celiac disease for some reason.

Which is not to say that celiac disease and casein intolerance can't produce autistic symptoms in some kids, which go away when they go gluten-free and dairy free. That is not the same as true autism.

Guest Villanfam

What I've read about Autism and celiac disease is that although they may be associated, in a lot of cases, an entirely different situation is at play. Some people with autism may metabolize gluten and casein (protein in milk) into the form of an opiate-much like heroin. So basically, when they eat it they are getting a high off of it and are becoming addicted. This high is similar to the high that heroin users experience, and it could account for the traits typical in autistic children (finger flicking, head banging, spinning). As well as being withdrawn and having a fascination with parts of objects. Also typical of opiate users and autistic kids is the distress they feel when there are small changes in their environment or routines. There is def. some connection between the two. The frequency of celiac disease is higher in autistic people than in the general public. The results of the gluten-free/cf diet varies. Some see improvement right away, within the 1st week, some it takes a year or so, and others see no improvement at all. The improvement among those also varies, some are able to sleep through the night, some become more verbal and interactive, and some are completely "normalized" on the diet.

There is a website devoted to this diet with Autistic kids Open Original Shared Link. It is full of info on the diet

Ursa, is right. No one knows for sure what causes Autism. What they think they've been able to determine is that there seems to be two different types of people with Autism 1) those born that way, from day one 2) those who start to develop "normally" for example meeting all age related milestones, walking/crawling/talking ect. and then around year 1-2 start to deteriorate.

My son was in the later he was crawling by 6 mths. walking around furniture at 7 months and walking unassisted at 10 months. He was also talking normally saying things like "what's that momma?" using sentences, but by 2 it was all grunts and single words with no understanding what was being said to him (Auditory processing Delays) It was like we were speaking Chinese to him. He was extremely aggressive towards other children his age. He would bite them and attack them and us (sometimes). We put him in a Special Education Preschool and they first thought he had PDD (Pervasive Developmental Disorder) just one of the Autistic Spectrum Disorders, and quite obviously ADHD as he was constantly on the go except when his fav. movie was on, then he would hyper focus. But after testing came back unlikely that he had it, they just worked with him on the areas that he struggled with. Once very coordinated he was now unable to peddle a bike, use a pencil, use scissors, anything that required him to manipulate another object and use it properly. His teachers call him high functioning, but he still has real struggles, socially especially! They all like him, so that's not the problem. He has always loved being around other kids, and people. He thinks everyone is his friend, but he can't remember one of their names LOL. He introduces us to everyone (and I mean EVERYONE!) when we are out at the store or something " Hi there, I'm Augustus and these are my sisters, they're naughty sometimes, this is my Mom, she's white, and this is my Dad, he's a brown man :lol: (Husband Hispanic)." Then he tells them all about Dinosaurs and even shows them all of the "animal voices" he has. He's very charming :P

Ursa Major Collaborator

You know that your son could have become autistic due to vaccine damage? Somehow, many kids are perfectly normal until vaccinated, and then show definite signs of autism. With many it is around the 18 month to two year range, when they get their booster shot. They'd show signs of reacting to vaccinations with earlier ones, but recover. But often the booster shot is 'the last straw', when the brain can't take any more assaults, and gets irreversably damaged.

I was born this way, my dad obviously had AS, and so do four of my six brothers and my sister. My sister is a lot more autistic than me, and is about as mature as a ten-year-old. Everybody else in the family denies it, and she has no feeling of being different. Even though I have always known I am different, I just didn't know what made me different until five years ago.

ravenwoodglass Mentor

For our family there is definately a connection between the two. And being gluten free has helped great deal with the presentation of aspergers symptoms in my DS and my husband. They both now use more direct eye contact, the flat aspect of their speech has resolved, the OCD component has disappeared and both are more interactive with others. My DH even signs cards now, a small thing I know but something he has never done before in the 20 years I have been with him. My DS has had the most remarkable recovery. If his gluten intolerance had been addressed at a younger age he would have had a much different experience in his pre and teen years. The gluten free diet does not 'cure' aspergers but for my family it has resulted in a great deal of resolution of the associated problems. I just wish I had not had to be close to death before celiac was found. The mental difficulties for my family have been much worse than the GI ones and seeing the changes in my family would encourage me to tell you that if you have a family member with aspie symptoms get them on the diet it certainly won't hurt and could help them a great deal.

helen albanese Newbie

My older daughter seemed to be headed to Autism- she was becomming withdrawn, sensitive to sounds, touch, rocking, violent outburst, her speech was disappearing. She had been a normal, active child until I weaned her from breastmilk at 12 mos, that's when the symptoms became more overt. That's the time my ex inlaws decided to fatten her up with pasta. By eighteen months,the celiac dx was made in NYC at St Vinny's. Thirty days later, I had my daughter back.... She has ADHD, dyslexia, shades of AS, however: she is mainstream- college, career, independant, driving, reading incessantly-I refused to accept a dx of emotional disturbance and special ed classes. I was fortunate enough to be in a position to dedicate time and energy and patience to her. My younger girl manifested differently, testing neg on the duodenal bx-eventually tested with bld test and coming up positive.Raised in a gluten free environment, gluten came into her life at her dad's house and again at my ex in-laws on visits. she assumed that she was gluten free, however because she fell off the growth curve, i had her to every dr. to find out before puberty. She was dx with celiac 16 mos before the onset of puberty-she was a size 6x at 11.5 yrs old and still had all her baby teeth. after dx, she grew to 5' in 16 mos and went to almost normal body size although she has a size 4 foot. Does a dx of AS/autism need gluten-free diet, would it hurt? Why do we have to have a cut/dry answer to our medical issues, since we are random genetic variables, shouldn't our medical care be tailored to our genetic differences

PS:i was dx with cs @ 45 yrs old after mis dx all my life-different symtoms


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Queen Serenity Newbie

Hi all,

I'm very glad to see a post like this one. I had no idea that the two were even remotely related. I have had celiac's for over 11 years now. My son, who is going to be twelve tomorrow, was just recently diagnosed with Asperger's. I was carrying him when I started to become ill. It wasn't until he was 9 months old that I was diagnosed. Who should I go to for help with this? Does anyone know what kind of doctor that could understand this situation? Should I put him on a gluten free diet? He is the type of child who has big time issues with change. Putting him on a gluten-free diet would cause a great deal of strain. HELP! Please post any ideas that could help. Thanks!

Vicki

celiacgirls Apprentice
Hi all,

I'm very glad to see a post like this one. I had no idea that the two were even remotely related. I have had celiac's for over 11 years now. My son, who is going to be twelve tomorrow, was just recently diagnosed with Asperger's. I was carrying him when I started to become ill. It wasn't until he was 9 months old that I was diagnosed. Who should I go to for help with this? Does anyone know what kind of doctor that could understand this situation? Should I put him on a gluten free diet? He is the type of child who has big time issues with change. Putting him on a gluten-free diet would cause a great deal of strain. HELP! Please post any ideas that could help. Thanks!

Vicki

I sent you a pm.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748

    dcarter1682
    Newest Member
    dcarter1682
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.