experience with food intolerances?

Discuss autism diets and biomedical treatments of autism.

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EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Fri Jul 07, 2017 9:53 pm

Grandmother, thanks for your response.
We have not tried cod liver oil - what's the reason behind trying it?

Grandmother
Posts: 46
Joined: Tue Jun 21, 2016 7:47 pm

Re: experience with food intolerances?

Postby Grandmother » Mon Jul 17, 2017 6:17 pm

Emily, many of these children are low in Vitamin D.  Also, you should research Dr. Mary Megson who says these children need the natural form of Vitamin A found in cod liver oil and she has had great success with it.  It also has Omega 3.  Doctors used to recommend cod liver oil back in the olden days and parents gave it for every illness.  My grandchild responded well to it.  Best wishes

SedesGobhani
Posts: 2
Joined: Tue Jul 25, 2017 11:14 pm

Re: experience with food intolerances?

Postby SedesGobhani » Sat Jul 29, 2017 12:14 am

Hi Emily; I'm responding because of some similarities with my son.

Seth was under age 1 when he began having skin rashes, at which point a doctor dx'd him as having "breast milk jaundice", and advised putting him on cow milk. However if I recall right, he was just over a year old (at this point he had stopped communicating already) and he was having bowel problems, so we also tried other things, such as soy milk. He got the shots as the establishment prescribed back then, and I began noticing odd behaviors (spinning, humming, delays, no communication) somewhere around 1 3/4 years old.

Now by age 2 he was still spinning and humming but I was assured by friends that their son suddenly began talking one day and that it was perfectly normal. At one point, my boss had a son with autism, and his sons therapist and I met, and started talking. He advised me to call the county regional center for a dx. I didn't know what autism was. The lady came and formally diagnosed him, and my wife was in denial for a bit. I was willing to accept it, but I wasn't willing to accept that behavioral therapy was the only hope, and that there was no cure. That was when I turned to internet groups to discuss with other parents, since the doctors didn't seem to give a dam about kids with autism. You can find some of my old posts from 2005-2008 timeframe by googling autism yahoo groups for my old profile name "redrackem".

Yes I tried the gigantic list of various supplements, vitamins of all types, desperate for a solution. Kirkland made a lot of money off us, as did other brands. All to no avail. We got an initial "pop" with Dr Buttar's transdermal DMPS, according to the wife, while I was at work, he began looking for me upstairs, and speaking in full sentences for the first time, said "Where is daddy? Daddy is in the garage." (This is where I often was as my autism research took place in my garage "office"). But he got a strange looking skin breakout around his chest (detox symptom?). Only later would I put the pieces of the puzzle together and figure out that initial "pop" was because he was provided with some particular sulfur based compound which was mimicking what his body was missing, glutathione, or GSH, the body's detox molecule. And only later would I get him a "detox panel" genetic lab test and find he had a null allele (gene completely missing on both chromosomes) for the GSTM1 gene, which is the body's GSH creation factory. Anyways his autism didn't seem to get better. At this point I just wanted him to be able to understand the world around him some day.

I believe it was on the soy milk that he developed what I read somewhere was "megacolon constipation". That is, sometimes his poop was the size of a baseball, and he screamed in pain and bled to pass it. It was very strange looking as well, a very hard core, not at all normal. However, the pediatric GI told me it was normal. I refused to accept this, and began my internet search, which is where I joined a network of parents giving each other advice, such as this one. The solution to the constipation was what someone proposed as a "yeast kill protocol". We gave a dose of Houston Enzymes' "No Fenol" (which supposedly breaks down the yeast organism cell walls) then half hour later gave a teaspoon of GSE (which killed the yeast). We did this for just 3-4 days I believe, and he had to come home from preschool because he had runny diarrhea in his shoes. We followed up with probiotics and... after a week, his first NORMAL stools!

His body was full of toxins, and low on GSH, and I think it was possibly making him more susceptible to food issues... I'm not the most observant person in the world, I guess, which is why it took me over a year to figure out that his symptoms (spinning, humming, stimming, zoning out), always only took place about an hour after eating. At that point, I began observing what he was eating, and the severity. I hadn't tried GFCF diet because I heard mixed results from parents. I figured out that it was the gluten combined with sucrose. He seemed sort of OK with gluten, and by this time he was OK again with milk also. He could handle fructose. Just sucrose with gluten products. This was all bad because mom was constantly feeding him toaster waffles with syrup. This was her idea of "food". We removed this and he began learning faster, and not stimming. The speech therapists and behavioral therapists began seeing improvements. One day he came home from first grade and was spinning in the living room. The teachers had been warned that he could not have sweets or gluten foods. I emailed the teacher about it, and she apologetically told me that they had sugar cookies for the Halloween party, and he had gotten into them. I was satisfied I had figured out how to nail this thing.

In retrospect, I would have taken a different approach if I knew then what I do now. I would not have wasted all my time and money trying various pills and tests, PK protocol, special alternative medicine doctors, etc etc etc - and instead I would have just corrected his diet. We were feeding him just fiberless, nutritionless, sugary sweet fluff, and fake milk. That's not real food. Actually after 1 year of age, why do kids really need milk? I wonder if we had just stuck with what we knew to be healthy - veggies and natural starch like whole grains, ordinary food like our grandparents used to eat, and reduced meat & dairy and other modern western diet indulgences, maybe even gone vegan, he just may have dodged the autism bullet entirely?

Well that was my story, and I realize all these kids are different. Hopefully something here could be useful for you to try. By the way Seth is now in high school, has plenty of friends, extremely smart (got upper 99th percentile on the Stanford TAG test for cognitive abilities), and is now 15 taking driving lessons from me. Of our 3 kids, he is the most compliant and the most loving and thoughtful. He also gets into the trouble the least. He has a few quirks when he goes off the diet (anxiety or forgetfulness) but for the most part his gut is healed and he's out of the woods. I couldn't have hoped for a better outcome.

- SG

EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Sat Jul 29, 2017 3:05 pm

Coconut flour vs shredded coconut vs coconut milk?
We just started SCD diet, and were giving shredded coconut. I just realized that on SCD diet shredded coconut is only permitted after 3 months. Is coconut flour permitted right away? If so, why?
My son did not tolerate almond milk - he developed a definite worsening ezcema while he was on it. Do you think it's ok to try blanched almond flour? or should we do walnut flour?
Thank you!

EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Sun Aug 13, 2017 10:17 am

SG,
thank you for such a great detailed response. So to clarify, for your son it was gluten WITH sucrose? If he took gluten without sucrose it was ok?
Do you think that Houston Enzymes' "No Fenol" then GSE + probiotic was the turning point? Which probiotic? What is GSE?

I am so happy that Seth is doing so well now! Wow! This is really inspiring!
Can you recommend any other useful forum?
We will try to observe my son also after different food, and see if we can figure out intolerances.
Which lab did the detox genetic panel and what kind of test?

EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Thu Aug 17, 2017 9:27 pm

SG,

One more question: once you figured out the food culprit, did you continue any supplements? Since he has a null allele, does he still need any supplements?
Thanks.

riggie
Posts: 38
Joined: Fri May 20, 2011 7:18 am

Re: experience with food intolerances?

Postby riggie » Sun Aug 20, 2017 9:44 pm

Hi EmilyV,

Just a quick recommendation, check out the TACA organization. https://www.tacanow.org/newly-diagnosed/ They are a non-profit group run mostly by parents with autistic kids and were EXTREMELY helpful in getting us going in the right direction. This is complex web to navigate including biomedical interventions, diet, therapies, etc., etc... Look to see if there is a local chapter in your area, attend coffee talks and sign up for a mentor.

Unfortunately this web forum doesn't see much traffic these days. If you aren't already signed up on Facebook groups, I'd recommend MAPS Autism group and Recovering Kids group. These have vast amounts of information that is easily searched and responses to questions are nearly instant.

Good luck in your journey. It's a long road, but really improvement is truly possible.

EmilyV
Posts: 56
Joined: Thu Feb 09, 2017 9:41 pm

Re: experience with food intolerances?

Postby EmilyV » Sun Aug 20, 2017 10:19 pm

Riggie,
can't thank you enough. The blueprints on the TACA website are phenomenal! exactly what I have been looking for, no need to rediscover the wheel!

GarryMor
Posts: 1
Joined: Wed Aug 16, 2017 6:34 am

Re: experience with food intolerances?

Postby GarryMor » Wed Aug 23, 2017 4:37 am

has anyone tried krill oil over cod liver?


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