GFCF diet success!!

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I agree, it is said quite a bit. Or, if it isn't said, it is what people hear. Almost all of us have been asked, by some well meaning friend or relation, "shouldn't you be doing a special diet or something? I read in XXX (or saw on YYYY, or heard from ZZZZ) that it really works."

Some good doses of reality do need to stay in the discussion, although I am sorry that doing so ends up dampening good spirits that are sincerely shared.

I am very happy that the OP found that the diet improved her son's behaviors. After she shared more about her son, it does sound like he is still autistic though. I hope she will not be so upset that she will not return. But, I didn't want her to think that the diet would help everything. Sorry if it upset her.

Sorry DW_a_Mom, but I do not agree with this statement. My DS is a considerable stimmer, and if not for engaging him or getting him interested in other activities, he would definitely not participate in any learning. My husband and I asked Temple Grandin about this, in person, at one of her talks. We told her about our son's stimming and she mentioned that she was a big-time stimmer also. But she said if she was allowed to stim whenever she wanted, she would not be standing up on stage talking to an audience today. She was given certain times to stim and the rest of the time she was encouraged to be engaged as much as possible.

Also, not sure how alternative treatments correlate with treating stims - although alternative treatments are used to treat stims, alternative treatments are used to address all of the challenges of autism. Not that I am one for alternative treatments - we are pretty mainstream (and DH is a scientist so he's very straight and narrow when it comes to this stuff). From the "mainstream" perspective, stims reduce as language and play skills increase.

Guess you struck a nerve

May have over simplified, in the interest of being fast.

We all teach our kids that there is a time and a place for stims. It is never allowing them anytime, anyplace, that ends up counterproductive. They are self-calming. Take away the child's mechanism for self-calming, and other behavior issues go up. It was amazing to me the difference in my child the moment I stopped fighting his need to pace and grab when he was at home. He knows to control these things outside the home, but home is the free space. And that one simple experiment reduced the volume of meltdowns 10 to 1.

On the idea of sacrificing A for B, I'm thinking more of how a schedule full of therapies and outsiders is naturally stressful for our AS kids, who crave a smaller universe, a calmer one, predictability and known people. It's mostly about asking, "at what cost?" When you know a child responds well to a quiet environment and a lot of down time, does it make sense to pursue questionable treatments that may deprive him of that? I'm not speaking of the proven things here, I'm speaking of the things that are not proven, but parents can be under pressure to try. If a child needs a shot to save their life, of course a parent will have the child get the shot despite the short term pain. But most of the choices parents face aren't quite that proven. Stims really aren't part of the equation there, unless a therapist is asking you for money and time to stop them. Poorly chosen sentence on my part, connecting the two, sorry.

Nor does that mean you don't engage your child in the world, but you do do so carefully. Parents have reported huge improvements from simple things like giving kids sunglasses or earmuffs for shopping trips. I found that once I stopped trying to drag my son into crowded situations, and allowed him to practice in smaller ones, he was able to gain the confidence needed to tackle the more crowded ones by his own choice later. And so on.

I agree with most of the above, def.

I call them victories rather than miracles. Like my son being able to now alternate between two pairs of shorts rather than just wearing one day after day (sensory issues and need for sameness). Yes, my son wearing two pairs of shorts in one month is a huge victory for us! Or my son only having one rage in over 60 days after having 3 - 5 per week for over a year...victory!

I prefer to celebrate the victories. I totally see your point. I know the diet and other stuff is extremely controversial.

I told a family member (via email) about my son's diagnosis. Her response was titled "My testimony". It was followed by the story of when her son was born. He started shaking really bad and they found that he had high lactic acid blood levels. She and her MIL prayed for hours. The doctors thought her baby may have a very rare disease because they couldn't find a cause for the high lactic acid levels. By the next day the baby was fine and the levels were normal. She ended the story with "That is my testimony".

I was offended by her response. Not only because it contrasts with my religious views but also because it didn't make any sense - I happen to know that high lactic acid levels are sometimes caused by stress and shock which could have easily been the case after c-section delivery. I didn't say anything to her about it. I said Thank You, I am glad your baby is OK.

To me, she sounded crazy and there was a logical explanation, but to her, the prayer was what cured her baby. If she went around toting that story to anyone that had a health issue - yes, I would say that is irresponsible. But, she could use it as a tool to teach other people about the power of prayer during times of illness.

I do agree with your point.

Hello everyone,

I just want to stress once again that I didn't mean to insinuate that diet can cure autism I was so excited I didn't think about how what I was writing might hit a nerve and I am so new to this world that I have only just found out about this debate. I also apologise using the word miracle but because this happened so I fast that is the way it left me feeling I still expected to wake up this morning and find him back to what I considered normal. I also left half the details out like the fact that my son is still squealing while he plays and playing with his ears etc but it is mainly that he is listening to me now, is not throwing tantrums, moving better and interacting with others more. It was done with the best of intentions.

angelbear you didn't upset me

DW_a_mom thank you for putting this in perspective for me and using information rather than all out attack.

To the person who said flat out my son doesn't have autism and I don't belong here I would like to know how it is you know this? Have you met my son?

Overall I think the guess that my son either has celiac disease or it atleast highly allergic to certain things and it has been making autistic or other traits seem more extreme is a good one although I will still stick to my story in the fact that is was like he dazed all the time not necessarily in pain or discomfort. I will be getting him tested properly.

I do think that some people could possibly ease up on others unfamiliar with these things. I am going to be honest I don't like conflict and will not be posting on here again. Best of luck to everyone and no matter what your views on this subject are if you come across someone that sounds like my son PLEASE suggest they get tested for allergies if they havn't been already.

I am very sorry you will not be posting on this website anymore. You are on the right path, keep going for your child.

Best of luck to you, and please feel free to come back if you want to discuss anything. The diet does help many in some ways, so don't give up on it.

Lovesmyson,

I know our membership can be tough to deal with at times, but it is really worth it if you do. The members posting with the least tact tends to be those who ARE autistic, and learning how they think and feel and communicate is something we, as parents to a child on the spectrum, are going to have to do one way or another. I started on a site a lot rougher than this one but I remember telling myself, "if I can't figure out how to communicate in a positive way with these people, how do I expect to do so with my own child as he matures?" Not that they aren't without their own personalities, of course, and not everyone is tough or rough, and our children aren't necessarily these adults, but ... my son does all the same things. States his facts, defends his conclusions, drops all the niceties, and no one can really convince him to do otherwise except in the most formalized of ways.

You won't be able to avoid conflict if it does turn out you are raising an autistic child. There will be conflicts in the recommendations from professionals, there will be conflicts with the school, and there will be conflicts with him, where no matter what you do you can't figure out why he is doing what he is doing and he thinks he's answered you and can't figure out why you don't accept that answer. On the later, this community provides an asset you'll have a difficult time finding anywhere else: the perspective of someone who may have done the exact same thing as a child. Learning to ignore a few remarks that bother you is a small price to pay for that insight, in my experience.

But, we all have to make our own choices. We certainly will respect yours, and will wish you all the best as you embark on this journey with your child.

Do find Tracker's thread on this board where he provides info on how to download the free book he has written for parents. You'll find it is a wonderful resource.

The thing about WP, is that there are so many different people posting here. Some want a cure, others don't. Some do the GFCF diet, other see diet, as a 4-letter word. Some love their kids, as they are, and others want their kids to be normal. With all the conflicting views, I can see why some parents might feel a little uneasy. I might not see eye to eye with the OP, but I do hope that she comes back, from time to time.

I can say this with 100% confidence - If I had a child with classic autism, I would be doing the diet, oxygen therapy, and every traditional and non-traditional therapy available to help my child. I wouldn't care what anyone thought about it or how much criticizm I got for it.

After reading along the boards for a few weeks, I felt compelled to actually log in to reply to this one.

My son has autism. He does extremely well on the GFCF diet - so much so that we too thought at first that we had found the magic key. But after a year on the diet, you know what? He still has autism. And we are 100% ok with that. We will keep him on the diet because *he* feels better when he's not eating that stuff.

I agree, and it's important to think about the cost to the parents, too. We all want to do our best for our kids, but most people can't do everything. We don't have the time, energy, money, strength for everything. We have to prioritize.

I bopped back into this thread because I just spoke with a friend of mine. She has two kids on the spectrum and one was diagnosed as celiac some years ago. (This also led to my friend getting a celiac diagnosis, and several other members of her family, but her daughter seems to have been lucky.)

I asked if she thought the GF diet had helped with her son's autism and she thought not. She said he was a lot more hyper now--naturally enough, because before the diet he had been extremely sick (you would not believe how sick this poor baby was, every week it was something else.) Now he is well and has energy, thank goodness. I thought it was an interesting data point. There's both celiac and autism in her family, but no clear relationship between the two.

Wow! That was fascinating, Greyshark.

I have written reams of similar sort of notes in the past about how I was feeling on exclusion diets but it absolutely wonderful to read someone else's for a change! I was particularly struck by what you said about things being more 3D on a GFCF diet; that has also been my experience.

With ref. Oats: I discovered that oats however "uncontaminated" were no good too.

With ref. Sausages: in England they almost always have flour in. As do most baked beans too, which is sad because I used to rely on the great english breakfast when in the UK, ( been living in France for the last 12 years ).

With ref. Soya: Not only is soya one of the most common allergens after wheat/gluten, dairy, and corn, but unfortunately soya sauce has wheat/gluten in. I very occasionally use "Tamari", which is a wheat free version of soya sauce.

With ref. length of time it takes for gluten and casein to leave the body:

It takes about 5-7 days for gluten and casein to leave the intestines.

It takes about 3-4 weeks for casein to leave the rest of the body.

It takes up to 26 weeks for gluten to leave the body, the last place is in the liver.

It can take from 6 months to two years or even longer for levels of gliadin-antibodies ( gliadin is the "active"/immune-system activating part of gluten ) to return to "normal" levels.

With ref. Leaky Gut: I was very excited to read recently that a new study came out this year showing that a subset of autistic people ( diagnosed as on the spectrum ) have a hyper-sensitive reaction to the opioid in gluten and casein which triggers intestinal wall cells to relax the junctions between them, and that this reaction also lasts longer than is normal too, like a sort of inertia, ( the chemical which gluten and casein opioid peptides trigger is called zonulin ) ... ie. a subset of people on the spectrum do in fact have unusually "leaky guts".

Have you read any of Karl Reichelt's work and ideas on food opioid peptides, or found the Sunderland Project site on the net, which is studying the effects on ( a subset of diagnosed ) AS of removing food opioid peptides from the diet?

Yes, I think that a sizeable subset of people who have been diagnosed as on the spectrum, ( and a subset of those who self-diagnosed as AS too maybe ), may actually be out of it on food opioids, or otherwise affected by chronic immune-system reactions to certain foods.

One of my favourite sites about gluten intolerance, exclusion diets, including masses of data on the neurological impact of celiac and non-celiac sensitivity, etc, is The Gluten File and its sister site, the forum "Gluten Free and Beyond" at:

http://www.glutenfreeandbeyond.org/forum/

PS. Where did Greyshark's post get to? ... I wish the post was still up because there were some other changes that they had noticed on a gfcf diet, and listed, which I also experienced. Little but significant differences/details.
.

As long as I'm around and thinking about Gluten anyway.
My daughter is both gluten intolerant and has aspergers. I need to say both, since they are two separate things. The gluten for her is a digestive issue, and the aspergers is a neurological one. For her, especially since she is young and has difficulty expressing herself, symptoms apparently overlap.

For example: gluten gives her migraine headaches.
As anyone who has ever had a migraine knows, migraines make you particulalry sensory sensative to sound and light. Her migraines will make her bang her head, avert her eyes, etc. If she gets enough gluten the migraines will cause a 'ringing in the ears" sensation. This will interefere with her auditory processsing.
It took a child psychologist who himself has celiac to be able to clue me in on noticing migraine vs. sensory symptoms.

Gluten will cause her gastrointestinal issues, but until she has had a sufficient amount of gluten these are mostly stomach cramps and gassiness. If have ever seen a collicky baby, where the baby yells, cries, and is in obvious distress, but none of the well meaing adults can alleviate the gassines, that's my daughter on gluten. The abdominal pains make it so she can't sleep, needs lots of deep pressure hugs, and has general low energy. She's a very positive person, however, and I have never heard her complain from the stomach pain. All she will say is "Mommy I nee-eed you." "Mommy hug me, hug me tight." If I'm not aware of her having eaten gluten my first thought is often that she's scared or upset over social anxiety, as one of her more prominent aspergers traits is social anxiety. "Mommy I nee-eed you." is exactly what she says when the social issues get to be too much.

Based on just my child alone, I can thoroughly understand how anyone having dual diagnosis could be confused. Good for you, LOVESMYSON, if the GFCF diet is working! Good for you, any and everyone, who takes all miracle cures with a grain of salt.