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Holly Bortfield aka maximom
"TITLE: "Dietary
Interventions: GFCF and Beyond".
Tuesday, January 7th
at 7 p.m. (Eastern), Note portions of the text have been edited for
spelling and grammatical errors, while other text with errors was left
in tact in the context of the chat.
Rebecca {public msg} Hello and Welcome to our
talkAutism Specialty Chat. If you have a question for our Host Guest
Speaker, Dietary Interventions: GFCF and Beyond-- Holly Bortfield aka
maximom. Just type a “?” in the room. The names will be taken in order
received. Please hold your questions until you are cued by the Moderator.
Thanks!
Rebecca {public msg} Glad to see you made it in Holly, good to have you
with us.
Maximom229 {public msg} Thanks
Moderator {action} . o O ( We will be starting the chat in a few
minutes..so feel free to chat amongst yourselves now )
Ron {public msg} Happy new year everybody.
Rebecca {public msg} Thanks Ron, same to you!
Maximom229 {public msg} We went to a friend's house - she has 3 ASD kids -
and we ate too much and drank too much.
Maximom229 {public msg} A severe autism, an asperger, and a CAPD/ADHD
Ron {public msg} What's CAPD?
Ron {public msg} Sounds like a cop show.
Maximom229 {public msg} Central auditory processing disorder.
Rebecca {public msg} We have an APD Sp host i have been trying to get to
contact Ron, She will be visiting next Wednesday evening
Rebecca {public msg} Karen Foli
Rebecca {public msg} She is a return guest.
Rebecca {public msg} Very interesting topic, APD, so complex.
Rebecca {public msg} So easy to miss-diagnose for Autism
Maximom229 {public msg} My daughter got it from her kindergarten vaccines
and it went away with chelation.
Ron {public msg} My son Robby for the last 3 months has really had his
hands to his ears.
Ron {public msg} Sounds really are starting to bother him as a 10 year
old.
Rebecca {public msg} awwwww Ron
Ron {public msg} How did you know vaccines caused it in your daughter
holly?
Rebecca {action} listens.
Maximom229 {public msg} It happened really rapidly after her shots
Ron {public msg} fever?
Maximom229 {public msg} Even her doc that missed my sons autism caught it
and said WHOA!
Rebecca {public msg} Very scary.
Maximom229 {public msg} Within 2 weeks she slipped, hard.
Ron {public msg} how?
Maximom229 {public msg} They dxd her with ADD and CAPD.
Maximom229 {public msg} We chelated her for 6 months and it went away.
Rebecca {public msg} wow
Ron {public msg} How did you know it was there, and that it then went
away?
Maximom229 {public msg} Mercury also inhibits the body's ability to
process dairy, which she all of a sudden had a problem with and now does
not.
Ron {public msg} I can see that.
Rebecca {public msg} Makes you really wonder, about some children that are
either mis-diagnosed or how chelation could really save these children.
Ron {public msg} How did dairy bother her?
DSL {enters}
Maximom229 {public msg} She got bad leg pains every time, had to take
Tylenol, got headaches and constipation.
Maximom229 {public msg} Not pretty.
Ron {public msg} She talks?
Maximom229 {public msg} She is NT - neurotypical - not autistic.
Ron {public msg} gotcha
Moderator {public msg} Maximom are you ready to start with perhaps a brief
bio about yourself?
Maximom229 {public msg} very brief.
Moderator {public msg} lol
Maximom229 {public msg} Let's see, my son, Max, now 7 has autism. He was
dxd at 2.8 years. We started him on the diet at age 3. He has done very
well with it. I started a support group for biological treatments here in
Florida in Jan 1999. I go around the state doing talks on the diet and
other biological treatments for autism. We have held 3 national
conferences on biological treatments, and I don't get paid.
Ron {public msg} ?
Rebecca {public msg} ?
Maximom229 {public msg} ROFL
Moderator {public msg} lol
Ron {public msg} What made you start with the diet? (What's ROFL?)
Rebecca applauds Maximom229 fervently.
Maximom229 {public msg} ROFL - roll on floor laughing
Ron {public msg} Gotcha
Moderator {public msg} Ron you have a question?
Ron {public msg} lol
Ron {public msg} What made you start on the diet?
Maximom229 {public msg} A lady named Dona Vickrey - her son is now 42 -
harped on me about the diet for 4 months before i tried it. There had been
some research on it but it seemed like allot of work so i was putting it
off.
Mommyo {public msg} ?
Maximom229 {public msg} My son was pretty addicted to dairy, eating a
boatload of yogurt - with his fingers - and laughing hysterically soon
afterwards.
Maximom229 {public msg} He was hooked.
Yecart {public msg} aww, maxi
Ron {public msg} What is the state of research on the diet, Holly?
Maximom229 {public msg} There has been much more research now, but a
double blind placebo controlled study is virtually impossible without
locking the subjects up. There has been some new issues raised lately
about the diet too.
Ron {public msg} I can see that... what issues?
Maximom229 {public msg} A few years ago, Repligen Corp, makers of
secretion, took samples from the labs that process the peptide tests to
verify them. Repligen has much better equipment, cleaner labs etc. instead
of replicating the results, they found NO opioids, much to their shock.
Ron {public msg} meaning...
Maximom229 {public msg} Then a researcher named Harumi Jyonouchi then out
of UMN Did a few papers on Abberant Immune Response to Dietary Proteins in
ASD, (which I personally fit) Also showing no opiods. Repligen was
assuming they were going to replicate the Opioid theory of Shattock,
reichelt, etc and didn't. The opioid theory is this....... These kids have
leaky gut which means there are little tiny holes in their gut which
molecules - peptides - can leak out. the molecular structure of wheat and
dairy are very similar, so is soy...and when those peptides leak out and
cross the blood brain barrier, they cause symptoms of ASD. We saw it in
action, the shoe does fit the new research, though, does not. We do not
know why. But until they figure it out, abstinence is the best policy.
Onegary {public msg} ?
Maximom229 {public msg} I am ready if you have a question.
Mommyo {public msg} Did you have a difficult time getting your son to eat
the food, and where did you find your recipes? Is there a good book you
recommend for beginners?
Onegary {public msg} Are there physical symptoms of a leaky gut, such as
bumps on skins, or can we only tell but doing a blood test.
Onegary {public msg} Go ahead Mommyo
Moderator {public msg} mommyo is first..
Maximom229 {public msg} Yes, there are physical symptoms, but they vary
from kid to kid. bumpy skin, primarily on the forearms, is one. Black
circles under the eyes, called allergic shiners, is another. No weight
gain, despite getting taller. But most are behavioral.
Onegary {public msg} It sounds allot like Chris, what are the behavioral.
Ron {public msg} and Robby at times.
Maximom229 {public msg} Those range from skimming, climbing, impulsivity,
no eye contact. Another physical is pupil dilation.
Onegary {public msg} ?
Maximom229 {public msg} Shoot
Moderator {public msg} OneGary I believe she mean you this time. :)
Onegary {public msg} Is the diet a all or nothing thing- can we do the
diet somewhat does a little help?
Maximom229 {public msg} It's like being a little bit pregnant. Either you
do it or you don't. 100% compliance or it's wasted.
Ron {public msg} yuk
Onegary {public msg} What about just no dairy or is this just a good way
to start- would you go cold turkey.
Maximom229 {public msg} We set out a plan years back......
Mommyo {public msg} Can you recommend a good book for beginners who want
to get started?
Maximom229 {public msg} Week one remove all casein.
Maximom229 {public msg} Week two remove all wheat.
Maximom229 {public msg} Week three remove all oats.
Maximom229 {public msg} Week four, remove all barley etc.
Maximom229 {public msg} Week 5 remove all soy.
Onegary {public msg} Thank you
Moderator {public msg} Rebecca you have a ?
Maximom229 {public msg} There are several good books. I listed them all in
the talk outline I sent Ron.
Maximom229 {public msg} Ron do you have that to paste in here?
Mommyo {public msg} thanks.
Ron {public msg} They should be posted on Holly's overview on Virtual
speaker at www.talkautism.org.
Rebecca {public msg} Can you tell us some signs to pick up on that you can
see Autism in a 2.5 year old child? As in, what did the DR. do, as far as
tests?
Maximom229 {public msg} Signs as need for the diet or that they have
autism?
Mommyo {public msg} ?
Onegary {public msg} ?
Mommyo {public msg} What about vitamins, and I hear allot about amino
acids for our kids
Rebecca {public msg} That they have autism that young.
Mommyo {public msg} Do you have any suggestions?
Heavensent95 {public msg} I have a 7yr old boy with autism.
Maximom229 {public msg} Rebecca, yes autism can be dxd much earlier than
2.5 years they use diagnostic tools - psychiatric tests actually
Maximom229 {public msg} like the CARS - childhood autism ratings scale.
Rebecca {public msg} Speech delays?
Rebecca {public msg} Oh ok, I see.
Mommyo {public msg} I am sorry I am not following well.
Maximom229 {public msg} They do speech, and gross and fine motor testing.
Rebecca {public msg} Thanks!
Heavensent95 {public msg} Mine was dxd at 20mos
Maximom229 {public msg} You need to find a developmental center near you.
Moderator {public msg} Heavensent is new to chatting and has a question
for you Maximom.
Maximom229 {public msg} They will test vision, as well as medical tests
for chromosomal abnormities - like fragile X.
Heavensent95 {public msg} ok
Maximom229 {public msg} Sorry i was still answering Rebecca. :)
Rebecca {public msg} Wow! That is amazing!
Heavensent95 {public msg} Oh that’s ok
Rebecca {public msg} Thanks Holly
Rebecca {public msg} Holly, you can move on..
Moderator {action} . o O ( my apology for jumping the gun )
Rebecca {action} smiles.
Maximom229 {public msg} Rebecca, don’t leave.
Maximom229 {public msg} If you have time I will talk to you after this is
over.
Moderator {public msg} She wont.
Rebecca {public msg} Oh no, I'm here until this is over, thanks!
Maximom229 {public msg} lol
Moderator {public msg} I promise *S*
Maximom229 {public msg} Ok, who’s next?
Heavensent95 {public msg} So am I.
Moderator {public msg} Heavensent go ahead.
Heavensent95 {public msg} Oh just wondered if you seen signs with that
diet and if it works.
Maximom229 {public msg} I have seen wonderful things, both in my son and
hundreds of others. I have seen a handful of kids recover on diet alone.
But they are few and far between.
Moderator {action} . o O ( What exactly is the name of the diet )
Heavensent95 {public msg} Wow is it hard to keep by and is it expensive?
Maximom229 {public msg} The research says 81-92% of ASD kids will benefit
from the diet.
Maximom229 {public msg} The diet is the Gluten and Casein Free Diet.
Heavensent95 {public msg} cool
Maximom229 {public msg} The first month is hard but quickly becomes second
nature. I actually spend much less on food now then i did before the diet.
Lillith274 {public msg} My son has been Gluten and Casein Free for over a
year and has made much improvement.
Ron {public msg} Where is that research from, Holly? I love to hear when
our families have research to reference. (It doesn't happen much.)
Maximom229 {public msg} I used to drop $4.50 per box on raisin bran and
more than I could count on Yoplait yogurt and prepackaged food.
Heavensent95 {public msg} Was it easy to get him to eat it.
Maximom229 {public msg} Ron, The research is from Shattock's ARU and
Jyonouchi. Both are listed in the outline I sent.
Ron {public msg} Thanks, and sorry for speaking out of turn.
Moderator {public msg} Onegary has another question.
Maximom229 {public msg} Very few people who use the diet also use meds.
Onegary {public msg} A friend will not even give her son raisons as she
states they dust the conveyer belts with flour- Is that small amount
harmful (like peanuts allergies).
Maximom229 {public msg} Either they had not used them before and now
didn't need them after the diet or they weaned them off.
Heavensent95 {public msg} Was it hard to get your son to eat the g.free
diet?
Maximom229 {public msg} Some kids do still need them, but generally for
OCD issues.
Maximom229 {public msg} Onegary - yes, raisins in a canister are processed
with flour to keep them from sticking. Also, they contain sulfites which
are not good for our kids. You have to find out which brands are safe.
Onegary {public msg} So even trace amounts are harmful.
Heavensent95 {public msg} Oh ok
Maximom229 {public msg} I live in Florida and Publix makes good ones.
Heavensent95 {public msg} Can u get it at a normal store?
Maximom229 {public msg} Publix is a grocery store like Safeway or
Albertsons.
Rebecca {public msg} ?
Onegary {public msg} ?
Maximom229 {public msg} Rebecca?
Heavensent95 {public msg} cool
Moderator {public msg} Rebecca, go ahead.
Rebecca {public msg} Is there a list somewhere on the net of Yes and NO
foods for this diet for the families of autistic children?
Maximom229 {public msg} Yes, years back i wrote a list that became what is
now www.GFCFDiet.com.
Rebecca {public msg} An internet address they might print out?
Maximom229 {public msg} It lists all the known GFCF Foods.
Rebecca {public msg} GREAT!
Maximom229 {public msg} There are more GFCF foods being made and found
everyday but there are tons of them on there.
Heavensent95 {public msg} cool
Maximom229 {public msg} It is searchable by category or you can copy and
paste it to print it out to take to the grocery with you.
Ron {public msg} We have many sources for them listed on expertfind as
well (www.talkautism.org) see Vitamins / Foods.
Maximom229 {public msg} Before i wrote it, I would stand in the grocery
for hours staring at label’s.
Rebecca {public msg} That is fantastic Holly, thanks. Moderator {public
msg} Go ahead Onegary.
Onegary {public msg} I love the states of the success rate, but what about
the age of the child? Is there an age after you only see minor results.
Maximom229 {public msg} Yes and no. I have seen a 40 year old benefit from
the diet but will he recover with it? No. Research out of UF Gainesville
shows that prolonged use of casein and gluten causes mental retardation.
Which is why the rate of MR in ASD population is about 80% in now adults.
Where in the younger kids, it's under 20%.
Ron {public msg} ?
Onegary {public msg} Thank you very much.
Maximom229 {public msg} Ron?
Moderator {public msg} There is only a few minutes left..does anyone have
any last questions?
Ron {public msg} Is there an intermittent test one subjects their child to
determine progress?
Ron {public msg} blood test?
Ron {public msg} saliva?
Maximom229 {public msg} The easiest is one you will not have to do.
Mommyo {public msg} I had my son on the diet for 2 years between the ages
o 4-6, When I took him off i saw no changes.
Maximom229 {public msg} It will be done for you by people like your
in-laws.
Maximom229 {public msg} They will slip your kid a cookie and your kid will
spend the next 4 days in a meltdown.
Ron {public msg} Nothing to measure opioid effects along the way.
Mommyo {public msg} I wonder if it would be worth it to try again?
Aliceanddinah {public msg} What do you do when your child is a picky eater
anyway..how do you get him to stick to the diet?
Maximom229 {public msg} Yes, there are peptide tests but they have a
higher than we would like rate of false negatives.
Maximom229 {public msg} Mommyo - did the diet hurt him in any way?
Mommyo {public msg} He actually lost weight on it.
Maximom229 {public msg} Did you do blood allergy food testing?
Mommyo {public msg} Because he didn't enjoy the food.
Mommyo {public msg} yes
Maximom229 {public msg} And remove all those things, including soy.
Maximom229 {public msg} ?
Mommyo {public msg} It came out he was allergic to wheat.
Mommyo {public msg} No not soy.
Maximom229 {public msg} They are three sides of the same coin. Try
removing JUST soy for a week and see what happens.
Mommyo {public msg} Back when i did it they said nothing about soy.
Maximom229 {public msg} I have had allot of people tell me what you are
telling me and the removal of soy shocks them.
Mommyo {public msg} I will try.
Maximom229 {public msg} That was a donation from Jyonouchi. :)
Maximom229 {public msg} If you need help, email me.
Mommyo {public msg} Thank you very much
Heavensent95 {public msg} What if they are picky?
Ron {public msg} It shocks me, i haven't heard.
Heavensent95 {public msg} How do you keep them on it?
Lillith274 {public msg} ?
Maximom229 {public msg} Aliceanddinah had a question back there
Maximom229 {public msg} How do you get a picky eater on the diet? Well,
the pickier the kid, the better a candidate for the diet he is. They will
self-limit their foods to what feeds their habit. Those are the perfect
kids for this diet. They will benefit the most.
Aliceanddinah {public msg} What if the only things he likes are what’s not
on the diet.
Maximom229 {public msg} That is why he needs it. They limit their foods to
only what feeds their habit. Only gluten and casein. Like cheese
sandwiches, chicken nuggets.
Aliceanddinah {public msg} For example he wont even eat a cheese slice or
banana if they are broken...throws a fit.
Maximom229 {public msg} The broken banana thing is autism, not diet.
Maximom229 {public msg} They all do that. lol
Maximom229 {public msg} But once you get them on the diet, the reactions
to life's little imperfections are much less.
Aliceanddinah {public msg} That would be so nice you don’t even know.
Maximom229 {public msg} I used to spend allot of my time at the doctors
office with his ear infections, peeling him off the furniture and out of
the street.
Aliceanddinah {public msg} I cant get him to take the vitamins...any ideas
Mommyo {public msg} ?
Maximom229 {public msg} Until the diet, and after the diet, i had time
(and less screaming and tantrums) to get on with the rest of it.
Aliceanddinah {public msg} Ok...thank you.
Mommyo {public msg} Can you put vitamins in frozen pops without losing
their potency?
Maximom229 {public msg} vitamins........
Maximom229 {public msg} Ok, there is a nice way to teach them and a not so
nice way. The nice way works about 5% of the time. The not nice way is
effective about 70% of the time. Ever given a cat a pill?
Mommyo {public msg} This is not fun.
Maximom229 {public msg} Lay him down on his back, use GFCF butter to
grease the pill, cram it as far back in his mouth to one side as you can.
Mommyo {public msg} I hate autism.
Maximom229 {public msg} Flood his mouth with water and plug his nose.
Rebecca Attempts to comfort Mommyo.
Maximom229 {public msg} Be prepared for him to bite your finger. The
feeling comes back in about a week - trust me. He will spit the pill out,
and you will cram it back in.
Mommyo {public msg} lol
Moderator {action} . o O ( Is there weekly vitamin pills? )
Maximom229 {public msg} Eventually you will get it in. We did this for 3
days twice a day.
Rebecca {action} . o O ( I buy the chewable jelly ones, my kids think they
are candy )
Maximom229 {public msg} Before he sat up and took them himself because I
think he hates being restrained more than taking pills.
Maximom229 {public msg} Poor guy.
Maximom229 {public msg} Be very careful!! Chewables usually have things
like Nutrasweet in them.
Rebecca {public msg} You ever try the gummy bear ones?
Maximom229 {public msg} No ASD kid should have sugar substitutes.
Moderator {action} . o O ( I use to have a small spindle I would have to
put in my sons mouth to stop him from biting me when giving him pills.)
Maximom229 {public msg} I used a chew tube.
Maximom229 {public msg} lol
Ron {public msg} What's that?
Maximom229 {public msg} And if you get a slipup on the diet or are in an
emergency, give them a over the counter Pepcid AC NON-chewable.
Onegary {public msg} Those chew tubes work great.
Maximom229 {public msg} It will lessen the reaction of the slip up.
Maximom229 {public msg} Chew tubes are clear plastic tubing (home depot)
that are about 3/4 inch thick. Therapists use them to keep kids from
biting themselves or others.
Ron {public msg} Oh I see.
Maximom229 {public msg} What was the original question about vitamins?
Moderator {public msg} Well I am afraid the hr is up, would like to thank
Maximom for being here with us.
Onegary {public msg} Thank you great chat.
Ron {public msg} Maximom, you were great! Thank you very much!
Rebecca {public msg} Thanks Holly!!
Maximom229 {public msg} Ok, anyone who wants more info, email me at
maximom@mindspring.com
Maximom229 {public msg} And check the links I sent to Ron.
Ron {public msg} And thank you Rebecca and Ms. Moderator. Great job as
always.
Maximom229 {public msg} Ron where are they posted.
Maximom229 {public msg} ?
Heavensent95 {public msg} Ok ty
Rebecca {public msg} Anytime...You are all welcome to continue chatting,
The chat area is open 24/7.
Moderator {public msg} Rebecca do you have the link to the Autism Boards?
Ron {public msg} Tell others about this chat being posted in the next
couple of weeks, on talkAutism.org, virtual speaker.
Ron {public msg} Or thru CAN's website, or www.ycs.org (in the near
future).
Rebecca {public msg} One second I can get the link to the board forum.
Ron {public msg} www.talkautism.org , Virtual Speaker. Good nite, all.
Rebecca {public msg}
Please feel free to join in the discussions on the talkAutism Discussion
Boards at any time!
http://www.parenthoodplace.com/cgi-bin/ultimatebb.cgi
For past talkAutism Specialty Chat transcripts:
http://parenthoodchat.com/transcripts.html
