Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    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.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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 As well as being withdrawn and having a fascination with parts of objects.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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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

Link to comment
Share on other sites

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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,069
    • Most Online (within 30 mins)
      7,748

    angie78
    Newest Member
    angie78
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...