Autism And Celiac

[Bell]

I am writing to ask anyone for ideas - even those who are unsure of their own entitlement to speak with authority.

I have recently tested positive on an antibody test for celiac, and I wondered whether there is a connection between this and my lovely nephew's autism. I know there ARE medically confirmed connections, though he has tested negative on a test - I suppose it would be the same antibody test I tested positive for. All the same, I am concerned about him, as he will only eat shepherds pie (made to a recipe my sis has used since he was a baby) carrot and lentil soup (ditto) weetabix or reddy brek for breakfast, and plain brown bread and walkers baked crisps in only 3 flavours.

These meals are familiar since toddlerhood, although the rotation of meals used to be a lot larger before he began to reject certain meals. These are often the ones with big chunks of meat, possible unexpected bones etc. He now has 2 breakfasts, 1 lunch and 1 dinner option. The only regulars (snacks) are bread and crisps. I work as his A.B.A therapist (behaviour, speech and language) and we are very close, with lots of 1-1 time together and it breaks my heart to think that his development may be held up permanently by something that we can at least to some degree overcome. He seems to be trying very hard to understand us ( he is a very affectionate and loving boy, enjoying cuddles, tickles, and his own peculiar form of kiss: putting his mouth gently to your eye socket and making a litttle squealing sound) but somehow removed by a barrier. His stomach is always distended and he has been prescribed laxatives by the doctors despite apparent (to me) diarrhea. He finds certain sounds incredibly painful, like motorbikes,drills, blenders, hoovers, but loves echoes...... he is fascinated, like lots of autistic kids with opening and closing doors. When he is in full self-stimulation mode, he runs backwards and forward making urgent humming noises. He is sensitive to new experiences, textures and people/creatures, and withdraws into a self-stimulatory world, shutting all else out.

He is going to be 5 in a few weeks, and is still in nappies, very little language, definite auditory comprehension probs, described above although no actual hearing trouble. I work SO HARD with him, and feel that he does too. I also feel that he tries too, but is battling something that we can't understand. Could his obsession with bread be celiac disease, despite the negative blood test? A biopsy would be extremely traumatic for him, but I have always thought gluten could be an issue. Please could anyone help?

Ps. My sis is pretty open, but my brother in law is very resistant to anything unproved. (A little aspergers himself I think, though a lovely lovely man). I doubt he would agree to anything without full medical backing. i know this probably puts a stop on many suggestions, but please suggest all the same. I want to know, and if I can I will harass him until he agrees. It would be worth it for the little boy's sake.

thanks,

Bell.

[aikiducky]

I'm not an expert by any means, but I know there's been a lot of discussion about a gluten and casein free diet helping some (not all) autistic people. As I understand it it's about a leaky gut letting gluten and casein proteins pass into the bloodstream and acting as an opiate of sorts, which obviously would make it even more difficult for a person to connect. So not necessarily about celiac but a different kind of process in the body. Oh, and the opiate effect could explain why someone can be almost addicted to gluteny food.

Pauliina

[veggienft]

The biggest obstacle to curing autism is, autism is not a disease. It is a failure to develop "normally". People with diseases start out normal, and lose something. Medicine traces what was lost, isolates a cause or causes and attempts to regain what was lost. That process is not available in autism.

Medical practitioners rely on proven treatments. Anything else is considered quackery. However medical science doesn't know what causes autism. A parent who expects to improve the development of his child by relying on the standard body of medical knowledge and practice is doomed to failure.

That's important, so I'll repeat it. If the father in question relies on standard treatment methods, they will not work. On the other hand, there are far more experimental methods which do nothing, than methods which help.

However, dietary improvement in autistic child development is widespread, and it's gaining ground in mainstream scientific circles.

Open Original Shared Link

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Here's a really good site, with references:

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High concentrations of casein and gluten peptides have been found in the urine of a large portion of autistic kids. Casein and gluten are opioids, mimickers of endorphin. They plug into nerves. There's a large reported incidence of autistic kids addicted to wheat and milk.

The autoimmune mechanisms these proteins use in their attacks are widely varied. When weined from wheat and milk, there's a large reported incidence of symptom improvement.

Open Original Shared Link

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As one of these links says, child autism can be equated to adult schizophrenia. I'd venture a guess. If you privately polled the treated gluten-sensitive people in this forum, and asked if they noticed any improvements in mood and emotion, the answer would be a resounding.......

*YES*

https://www.celiac.com/articles/21637/1/Tg6...ders/Page1.html

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I'm throwing in another aspect. Most people don't become gluten intolerant because our immune systems start attacking food. Our immune systems attack the fungus candida albicans. Candida albicans mimics gluten, and our immune systems mistake gluten for candida albicans.

In the small intestine, candida albicans thrives on sugars, especially hard-to-digest sugars like fructose and lactose, fruit sugar and milk sugar.

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I see a common thread in the studies linking autism to proteins. About half of autism seems solidly linked to these proteins. What about the other half?

Well, there appears to be an answer ........possibly ........teratogenic changes in epigenetic gene expression and mitochondria.

The "metabolic pathway" describes all the mechanisms which transform carbohydrates into energy, from digestion through the "Krebs cycle", through lipid membrane transport, to mitochondrial energy conversion. When any of these mechanisms is broken, the host stops operating correctly.

Open Original Shared Link

We don't genetically inherit the ability to turn ingested carbohydrates into energy. Mitochondria are responsible for transforming carbohydrates into adenosine triphosphate (ATP), the energy currency of the human body. Mitochondria are tiny biological engines in the cytoplasm of our cells. We inherit mitochondria directly from our mothers.

Mitochondria operate via their own independent genetic codes. Mitochondrial codes are not as stable as genetic codes, and are subject to chemical, physical and random changes ......"teratogens".

Epigenetic proteins are proteins which operate on developing stem cells. They turn on some genes and turn off other genes in order to specialize the aspects and jobs of particular cells. Epigenetic proteins turn some stem cells into bone, some into fat, some into nerve, etc..... We inherit epigenetic proteins with our genetic nuclei.

Open Original Shared Link

Epigenetic proteins coordinate genetic attributes with mitochondria, especially in children. The above link cites studies which associate certain genetic codes with mitochondrial dysfunction in autistic children. These studies hypothesize that teratogenic effects cause certain gene types to mis-coordinate mitochondrial energy conversion.

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......What it all means.....

Milk and glutenous grains are carbohydrates containing opioid proteins. These proteins are linked to autism. Still other cases of autism are linked to an inability to digest and convert all carbohydrates. The apparent treatments are:

1. Stop feeding autistic children milk and glutenous grains

2. Stop feeding autistic children sugar

3. Regulate autistic children's intake of all carbohydrates, and place them into semi-ketosis.

You can find plenty of support for low-carb diets here:

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[Bell]

I admit I didn't understand all the scientific language and references, but I do agree with you that it would be a good idea to limit the gluten, casein and sugars that he eats. But my brother in law is a real fighter against what he calls "bad science". I don't know how to reach him, without him labelling me a quack too, and having all the more reason to disregard the things I suggest! I know I sound defeatist, but it is difficult to convince a sceptical and conservative literally minded man of anything outside of his accepted sphere. Perhaps I could try and find ways of getting my nephew to touch, smell and even taste other foods, so that there are more possibilities in the future.

thanks for your wisdom,

Bell

[NewGFMom]

Your son sounds a lot like my husband's cousin. His mom put him on a gluten free/cascien free diet when he was about 5. She couldn't toilet train him and he had what she politely referred to as "bathroom issues" meaning that his poop was really weird. His belly was distended and he had stomach aches. She was told by the doctors that "autistic kids are just like that."

She did a bunch of research and learned about success with autistic kids and a gluten free/cascien free diet. So, she put him on a very limited diet and within a weekend of pulling the dairy he was using the toilet. It's over six years later and he's doing great. Any time he gets gluten or cascien his behavior regresses until it works its way through his system.

She later got him a colonoscopy and a stomach biopsy and they found out that his digestive system was full of parasites. The doctors think it's a result of his immune system being compromised by 5 years of gluten and dairy.

But a gluten free/cascien free might really help your nephew. Just make sure if your sister is going to do it, to commit to it for at least six months to a year. He sounds so much like my husband's cousin.

Best of luck.

Margaret

[Fiddle-Faddle]

Bell, there is more than enough research AND anecdotal evidence to for this to be compelling evidence, not bad science.

Perhaps you might search in local autism/celiac support groups and find people in your vicinity who have tried the diet on their autistic child WITH GOOD RESULTS. Nothing convinces like visible success.

[Bell]

Bell, there is more than enough research AND anecdotal evidence to for this to be compelling evidence, not bad science.

Perhaps you might search in local autism/celiac support groups and find people in your vicinity who have tried the diet on their autistic child WITH GOOD RESULTS. Nothing convinces like visible success.

Through the ABA therapy I do with him, we have met others who have seen real success. Our supervisor, although never suggesting it might be worth looking into, replied when I asked, that EVERY other autistic child she worked with had responded well to changes in their diet. His father knows this. It seems that he (along with the supervisor) are so scared of seeming to be "fooled" by the "quacks" that they won't suggest, or try anything unless it's ben proven beyond a shadow of a doubt.

I did manage to persuade them to try gluten-free bread for 2 weeks once, but they gave up, saying it was too hard to find similar bread locally. (He will only eat brown bread, and is very fussy about the brand). But he was still eating weetabix, oats, and crisps which have malt extract in. I've heard from one of my friends that there is s rice porridge similar to reddy brek, and perhaps I could experiment with baking gluten-free bread for them to freeze? I am hoping that my own recent diagnosis will sway him a little further than previously.

[Cinnamon]

There are enzymes on the market specially developed for autistics that break down gluten and casien. I tried them for my son, who's not autistic but has ADHD and seems to share many of the dietary problems that autistic children have. I thought they worked well for him. He improved greatly on them, but he really needs to stay off gluten entirely. He's likely a celiac or gluten intolerant, and for them enzymes are not the answer. But for an autistic child, they may be. They are easy to try and maybe if the parents saw improvement, they might be willing to try the diet.

If you do an internet search for autism and enzymes, lots of information will pop up. They might be game to give something simple like that a try.

[Fiddle-Faddle]

Most of us here MAKE our own bread, as the premade gluten-free stuff is so difficult to find, so expensive, and costs such a ridiculous amount.

Here is my recipe for flax bread, which tastes remarkably like brown bread. I make it in 4" cake pans, and it comes out like hamburger buns, but it also works very well like focaccia.

I realize that your nephew make take issue with it being a slightly different SHAPE than his regular bread, but the taste and texture should be quite similar. You might try making it yourself and bringing it over for them.

there ought to be a brown rice flour mix at your grocery store, but you can make one pretty easily:

2 part brown rice flour

1 part corn starch or tapioca starch

1 part potato starch (NOT potato flour)

note: most recipes for gluten-free flour "mixes" call for xanthan gum. I added it to the recipe below in the amount that you would need for the recipe. But in general, you will need about 1 teaspoon xanthan gum for every 2 cups of gluten-free flour. Without it, the recipe will be a total disaster.

gluten-free

[Gina C.]

Hello All,

My son is on the autism spectrum ( he has PDD) and we first noticed problems with him when he didn't speak at the age of 2. We sought early intervention and taught him sign language (which made a HUGE improvement for him- less tantrums because he was able to communicate his needs to us).

When my private speech therapist and the early intervention speech therapist both independently mentioned this chiropractor to me who does alot of research with autistic children, I was right on board. My son was seen by psychologists, neurolgists, you name it and no one knew what was wrong with him because he is not a clear cut autistic child. He is extremely affectionate and makes great eye contact and many other attributes that are not associated with autism.

When I went to see this Dr I will never forget what happened. She came into the waiting room and called my son's name and went down on her haunches and held her hand out to him. My son ran to her and put his hand in her and she stroked his back and looked up at us and said "I know what is wrong with your son". You can't begin to imagine how that felt to finally hear those words!

Basically, she told us that children on the spectrum have trouble digesting proteins and that the brain requires proteins in order to function properly. Your body cannot produce these proteins, you need to ingest them. We sent out a stool test to confirm this and sure enough his test came back a "5" when normal was >54!!

She first put him on a papaya enzyme and within 2 weeks he spoke his first word and since then he has been playing major catch-up. She has since put him on a stronger enzyme and he doesn't take the full dosage like he should (we put it in his sippy cup and sometimes he doesn't finish it all). Yes, he still has issues and he is yet to potty train (he's 5 1/2) but I shudder to think where he would be today without taking those enzymes.

I have done alot of research and would never give him anything that could hurt him and as a parent of a very special child, I can tell you that ezymes and "non conventional" methods definitely work.

Now, I have just found out that I carry a celiac and gluten sensitive gene and my husband is about to get tested as well (his brother has crohn's disease- gut problems run in his family)

All this to say that I do believe that someday a connection will be found with gluten/casein and autism. We are about to make our 2nd attempt and gluten-free/cf with him. It is very tough when, as you stated, his whole limited diet revolves around gluten.

I wish you the best of luck with your nephew. It warms my heart when I hear people who care so much for a child that they look into every possible place for an answer.

If there is every any questions I can help you with, please contact me- I would be happy to.

Gina

[knitaddict]

My 3 year old daughter is autistic. We're pretty darned lucky that she's a good eater....and I also think that she's going through a...."phase"...right now...for lack of a better term. She seems to be very open right now...which is good, considering that we've just instituted the gluten-free diet. She's done well...she's country, though...and I think that she feels that ANYTHING'S possible, as long as you can have cornbread. Seriously though, I DO feel that there's a link between celiac and autism and would recommend to anyone who knows an autistic child and their parent(s), that they see a DAN doctor. Defeat Autism Now doctors really do embrace the holistic side of medicine and try to combine it with traditional approaches...the results are sometimes miraculous...I think that it's something that should at the VERY LEAST, be investigated. The approach, thru diet, supplements, and therapy, is so much less invasive than drug therapy...but that, too is sometimes needed....which is why I would recommend DAN doctors...they can approach it in so many different ways.....

...and they won't look at you like you're bonkers if you suggest a rather odd sounding therapy...they've heard it all...and if they haven't, they're RECEPTIVE to anything.

[Rachel--24]

Defeat Autism Now doctors really do embrace the holistic side of medicine and try to combine it with traditional approaches...the results are sometimes miraculous...I think that it's something that should at the VERY LEAST, be investigated. The approach, thru diet, supplements, and therapy, is so much less invasive than drug therapy...but that, too is sometimes needed....which is why I would recommend DAN doctors...they can approach it in so many different ways.....

I would have to agree with this. If at all possible see a DAN doctor.....as the previous poster mentioned, sometimes the results are miraculous. I see a DAN doctor myself....even though I'm an adult and not autistic.

The DAN doctor I see has had very good results with treating ASD's.

I would HIGHLY recommend implementing the gluten-free/cf diet and/or enzymes. If the father is not open to the diet....how about enzymes?? There are enzymes on the market that are specifically designed to help these kids break down gluten and casein.....as well as other foods.

I would encourage you to research enzymes. Many kids improve significantly once they are on enzymes.

[Bell]

My son was seen by psychologists, neurolgists, you name it and no one knew what was wrong with him because he is not a clear cut autistic child. He is extremely affectionate and makes great eye contact and many other attributes that are not associated with autism.

When I went to see this Dr I will never forget what happened. She came into the waiting room and called my son's name and went down on her haunches and held her hand out to him. My son ran to her and put his hand in her and she stroked his back and looked up at us and said "I know what is wrong with your son". You can't begin to imagine how that felt to finally hear those words!

Basically, she told us that children on the spectrum have trouble digesting proteins and that the brain requires proteins in order to function properly. Your body cannot produce these proteins, you need to ingest them. We sent out a stool test to confirm this and sure enough his test came back a "5" when normal was >54!!

Gina

You can't believe how hopeful this makes me feel. They would probably be willing to try the enzymes, and with my new and gratefully recieved bread recipes, I'm going to get baking and see what I can produce.

Regarding the DAN docs, I don't know too much about it here in the UK. Are there similar doctors here? My sister has mentioned the Defeat Autism Now movement, but always with a sort of caution. She is wary of anything that implies that elements of his character are so bad they need to be DEFEATED. As he gets older, it's harder to see his autistic traits as being a symptom of something wrong without worrying that you are rejecting the real little boy. If she could believe that the autism could be reduced and that there was more "real boy" being masked behind the stimming, I think she would feel more able to be open minded, but if it fails, she would feel guilty because she had been trying to reject or remove part of what was going to be her son, forever. I think a lot of it comes down to hope. Perhaps my diagnosis could actually provide some hope in this situation!

I can't tell you how grateful I am to hear these responses. You know, I apparently have dyspraxia, which was diagnosed via a 3 hour test. My weaknesses were in short term memory and compartmentalising information. I wonder if these will improve on a gluten-free diet? It's quite exciting to think I might get a new and polished brain!

[Fiddle-Faddle]

Please look up a book called Unraveling the Mysteries of Autism by Karyn Seroussi--it's by a mom of an autistic child. She was basically able to REVERSE the autism in her son with the Gluten-free Casein-free diet, and she had to fight with an awful lot of doctors on the way.

[Rachel--24]

Another good book is "Louder Than Words" by Jenny McCarthy. I cant imagine reading the book and NOT wanting to give the diet a try.

[Bell]

Thank you, I've ordered both!

xx