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DAN! conference in D.C.

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Hi all,

This weekend's DAN! conference was truly awesome but very long for

me. I am truly amazed at all of the doctors and speakers. It's an

experience that I will always remember and treasure. I met some

exciting people and doctors. It was so nice to see Dr. Brenner there

as well. It's amazing how much information I got and the many things

that I learned. Today, Steve and Stevie tried out HBOT. So did

, Pretty cool! I want to mention some special people that I

met...Theresa Binstock, Lynne Redwood, Lenny Schafer, Gilmore,

Patty Lemer, Dr. Pangborn, Dr. Kartzinel, Dr. Sydney Baker,

as well as parents from different states. It was amazing to

finally put faces with names. You are all of our heroes because you

started the ball rolling along with Kirby. You are what makes

the EOH group so important. Thank you for talking, listening and

giving your advice.

Now for the other advice part, after three weeks of removing all rice

products, we made tremendous progress. No more runny noses and loose

stools. But then I added Quinoa and potato noodles. I now have to

remove both as Sam has loose stools and they both have runny noses

once again. BLAH! What's a mom to do? Any advice? We are upping the

probiotics and are going to watch carefully as we have an appointment

to get tubes inserted in both boy's ears on Thursday. Here's hoping

that they do not get any ear infections due to this huge mistake. I

did not realize that white potatoes and organic brown rice are so

similar until I spoke with someone at the DAN!. And the quinoa? Well?

At this point, I think our guys will be doing meats and veggies. Has

anyone experienced this many food allergies or reactions. Yes, I know

with an overabundance of yeast and leaky gut that their systems are

fragile. We are still working on these issues.

TIA,

www.babyhomepages.net/thegillespiefamily/

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Hi , did you get to hear any info on the Specific Carbohydrate

Diet? That might make a lot of sense for your kids based on what you said. We

are in our 5th week of it with my ASD son and fairly NT 3 yo with bowel issues

that rival my ASD kid's. We had already been 2 years strict GFCF, with good

results but messy poopies still. SCD have really improved the bowel issues.

SCDiet

http://www.pecanbread.com

Feel free to email me off list if you'd like.

Becky

>

> Now for the other advice part, after three weeks of removing all

rice

> products, we made tremendous progress. No more runny noses and

loose

> stools. But then I added Quinoa and potato noodles. I now have to

> remove both as Sam has loose stools and they both have runny noses

> once again. BLAH! What's a mom to do? Any advice?

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Thank you, Becky. And yes, I heard that panel of speakers regarding

the GFCF vs SCD. At this point, the twins will be doing meats and

veggies. The grains seem to irritate their GI tracts and start up the

nasal allergy reaction.

>

> Hi , did you get to hear any info on the Specific

Carbohydrate

> Diet? That might make a lot of sense for your kids based on what you

> said. We are in our 5th week of it with my ASD son and fairly NT 3

yo

> with bowel issues that rival my ASD kid's. We had already been 2

years

> strict GFCF, with good results but messy poopies still. SCD have

really

> improved the bowel issues.

>

>

>

> SCDiet <http://www.scdiet.net/>

>

> http://www.pecanbread.com <http://www.pecanbread.com/>

>

>

>

> Feel free to email me off list if you'd like.

>

>

>

> Becky

>

>

>

> >

>

> > Now for the other advice part, after three weeks of removing all

rice

>

> > products, we made tremendous progress. No more runny noses and

loose

>

> > stools. But then I added Quinoa and potato noodles. I now have to

>

> > remove both as Sam has loose stools and they both have runny noses

>

> > once again. BLAH! What's a mom to do? Any advice?

>

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Hi, did they cover the low-oxalate diet as well? I think ANYONE considering

SCD, needs to be researching low-oxalate before they decide. :)

Trying_Low_Oxalates

Re: DAN! conference in D.C.

Thank you, Becky. And yes, I heard that panel of speakers regarding

the GFCF vs SCD. At this point, the twins will be doing meats and

veggies. The grains seem to irritate their GI tracts and start up the

nasal allergy reaction.

>

> Hi , did you get to hear any info on the Specific

Carbohydrate

> Diet? That might make a lot of sense for your kids based on what you

> said. We are in our 5th week of it with my ASD son and fairly NT 3

yo

> with bowel issues that rival my ASD kid's. We had already been 2

years

> strict GFCF, with good results but messy poopies still. SCD have

really

> improved the bowel issues.

>

>

>

> SCDiet <http://www.scdiet.net/>

>

> http://www.pecanbread.com <http://www.pecanbread.com/>

>

>

>

> Feel free to email me off list if you'd like.

>

>

>

> Becky

>

>

>

> >

>

> > Now for the other advice part, after three weeks of removing all

rice

>

> > products, we made tremendous progress. No more runny noses and

loose

>

> > stools. But then I added Quinoa and potato noodles. I now have to

>

> > remove both as Sam has loose stools and they both have runny noses

>

> > once again. BLAH! What's a mom to do? Any advice?

>

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Holly,

Could you explain a little about the Low-Oxalate diet? What does

it have to do with autism? Sorry, but I have never heard of this.

Thank you, Donna

> >

> > Hi , did you get to hear any info on the Specific

> Carbohydrate

> > Diet? That might make a lot of sense for your kids based on what

you

> > said. We are in our 5th week of it with my ASD son and fairly NT

3

> yo

> > with bowel issues that rival my ASD kid's. We had already been 2

> years

> > strict GFCF, with good results but messy poopies still. SCD have

> really

> > improved the bowel issues.

> >

> >

> >

> > SCDiet <http://www.scdiet.net/>

> >

> > http://www.pecanbread.com <http://www.pecanbread.com/>

> >

> >

> >

> > Feel free to email me off list if you'd like.

> >

> >

> >

> > Becky

> >

> >

> >

> > >

> >

> > > Now for the other advice part, after three weeks of removing

all

> rice

> >

> > > products, we made tremendous progress. No more runny noses and

> loose

> >

> > > stools. But then I added Quinoa and potato noodles. I now have

to

> >

> > > remove both as Sam has loose stools and they both have runny

noses

> >

> > > once again. BLAH! What's a mom to do? Any advice?

> >

>

>

>

>

>

>

>

>

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Hi, Owens, who usually presents on sulfur pathways in autism at the

DANs was to touch on this at the DC DAN. Here is some info:

Owens

Since completing her masters degree at the University of Texas in Dallas,

Mrs. Owens has lectured widely in the U.S, including the Center for Disease

Control and the National Institute of Health in Bethesda. She has also

lectured as far afield as Scotland, England, Australia, and Norway. She

brings into her lectures information she has gained from ten years of

interacting with parents and doctors of children with autism while she

maintained an intense study of the medical literature, including literature

that we need to understand today's issues, but which got lost in earlier

decades. This effort has been directed mainly at finding the basic science

that can tell us how the sulfur system works: how it is integrated, how it

matures, and how it interacts with other systems. Oxalates appear to be part

of that system, but their role outside the role of binding to calcium and

incidentally forming kidney stones, is little understood.

As a member of the Defeat Autism Now! Thinktank (a project of the Autism

Research Institute), she continually dialogues with physicians and

scientists who treat children with autism. She also consults with sulfur

scientists and other basic scientists who are on the cutting edges of their

fields, attempting to recruit them into studying autism, but also attempting

to cross-pollinate information that generally stays behind disciplinary

barriers. She does extensive analysis of lab work, specializing in studying

ratios and their meaning in the plasma amino acid tests and studying

correlations within other tests. By comparing the findings and reference

ranges from labs all over the US and world on different tests, she has

developed some concerns about the suitability of how reference ranges are

calculated for urinary tests on young children. She is working actively at

getting some policy changes in place to assure more accurate testing for

this age group. Two years ago, in order to gain from the experience of those

outside autism circles, she began an internet list where people discuss

successes and failures they have had with sulfur-related supplements at

sulfurstories @ . It now has over 720 members. She recently

opened a new group called Trying_Low_Oxalates, with 170 members, currently,

where people can learn how to implement a low oxalate diet. She is delighted

to be here to talk about the amazing improvements children are experiencing

on the low oxalate diet.

Q: Can you tell us what oxalates are, and the basics of the diet?

A: Oxalates are two carbons joined together with 4 oxygens. It's a structure

similar to sulfate. There are a lot of problems with sulfate chemistry in

autism, so it's interesting that the oxalate structure is so similar. Dr.

Rimland did some studies (16-18) that showed B6 was affected in autism. B6

is key for the sulfur chemistry, and for oxalates.

When you have inflamed gut, Crohn's for example, very few oxalates are

absorbed. So since autistic kids often have inflamed gut, it made sense to

have a low-oxalate diet. We did a pilot study with 7 kids. All 7 were high

in oxalates, and started the diet. They had problems with frequent

urination, GI pain, etc. within a couple hours of eating. They had changes

in behavior following eating. Things started changing with the diet. A lot

of the things we've been calling yeasty behaviors go away with a low-oxalate

diet. A lot of these kids had trouble taking DMG and TMG, glycine in

general. We saw problems with constipation/diarrhea in these kids before the

diet, even after being treated by GI docs. A lot of these children had

trouble when introducing nuts, legumes, soy. A lot of these kids craved

high-oxalate foods.

Q: What foods are high in oxalates?

A: Nuts, legumes, green leafy vegetables, spinach, chard, black raspberry,

soy, pecans, refried beans, almond, beet, okra, sweet potatoes, chocolate,

cocoa, a lot of different teas, black current, dried fig, canned fruit

salad, concord grapes, rubarb, tamarillo, tapioca are all extremely high in

oxalates. If you google 'oxalate contents of food' you should find all the

details of high-oxalate and medium-oxalate foods.

It makes sense to try low-oxalate diet for at least a week before moving to

medium-oxalates.

Q: My son only eats PB & J, sugary juice, pretzels, milk, and chocolate. I

have tried to limit his diet, but he refuses to eat longer than I can hold

out. Any ideas on how to get him off this diet without starving?

A: Some of the food preferences of these kids are changing on the diet.

Rice/corn caused one child to break out - now that she's on a low-oxalate

diet, those same foods aren't making her break out anymore. Chocolate and

peanut butter are high in oxalates, jelly might be too. Milk is generally

ok, but soy milk is extremely high in oxalate.

Oxalates are very easily produced by sugar. If you eat a lot of sugar, it

depresses thiamine chemistry. Enzymes then turn things into oxalates. So

don't eat a lot of sugar.

Q: My son is SCD legal, but still does not have a healthy appetite. Do you

have any advice on how I can increase his appetite?

A: Is he trying a low-oxalate diet yet? (no, just scd, no juice, lots of

proteins). There are children that are eating an awful lot of food, and not

putting on weight, and they act starved all the time. When on a low-oxalate

diet, they stopped acting starved, gained weight and height. I went on the

low-oxalate diet myself a few months ago. I found that foods taste better

now. Oxalates deplete glutathione in a big way. Oxalates may be changing the

trafficking of zinc. Oxalates and inflammation seem to go hand in hand, more

research needs to be done on oxalates and inflammation. Oxalates induce

oxidative stress and reduce glutathione, could possibly affect TH1 to TH2

shift.

Q: Hi , thanks for taking my question. Do you recommend doing a low

oxalate diet with a gfcf diet? What is your web site?

A: I think when you start the diet, it's a good idea to keep in place what

you are already doing, and see if getting off the oxalates changes your

sensitivity to certain things. Some folks who couldn't tolerate rice or corn

can now tolerate. Another person has reintroduced gluten and casein, and is

doing well.

You can sign up to the group Trying_Low_Oxalates. You can sign up as

" no email " and not be overwhelmed by the mail.

Q: Would you discuss B vitamins and oxalate chemistry...We are SCD but I

have been reading LOD board and caught bits and pieces of discussion

regarding thiamine and biotin. I am interested because I am unable to get

my son on B vitamins without alot of hyperactivity.

A: The rules about intolerances to different supplements are changing. Zinc

is depleted with oxalate. A lot of kids have been on very high zinc. Now

they're reducing their zinc on the low-oxalate diet. The parents trying this

diet move low and slow (low dose, go slow with changes).

Q: Might the oxalate issue be more important than GFCF issues for some kids?

Do kids who respond to GFCF tend to be the same ones who respond to this

diet? Are oxalates related to metals at all?

A: Gluten is metabolized towards oxalates. Casein is not a problem - but

lactose might be, because that can be metabolized towards oxalates. Oxalates

are related to metals - they are very potent in their chelating abilities.

Not sure how this relates to DMSA or DMPS, but ALA seems to reduce oxalates.

So while we might have thought it was a great chelator, perhaps the effect

we're seeing is from the reduction of oxalates. ALA is anti-oxalate, no one

has ever thought to test the other chelating agents to see if they are.

Q: We've been LOD for about 1 month. I tried it because my son urinates

constantly. However, I haven't adjusted supplements. Are there supplements

that we should avoid? We are starting td-ALA soon.

A: The ALA should help. There are quite a few supplements that are helpful.

Taurine is anti-oxalate, give more taurine.

Oxalates bind beta-alanine. If your son is urinating constantly, this diet

might very well help.

Q: Hi. My son had an allergic reaction after 12 weeks to the DMPS. We are

now using DMSA. I am worried he may have reacted to the sulfur. DO you

think the low oxalate diet could help him not react to sulfur?

A: I do think there is a possibility that some of the kids with

sulfur-sensitivity could be the oxalate kids. A few parents reported that on

the diet they were seeing sulfur-sensitivity diminish. Children eating swiss

chard and spinach every other day don't see the differences from day to day

- it may be because their bodies have so many oxalates, they're not seeing

the difference.

Q: My daughter is taking custom amino acids after being tested through

Metametrix. She was quite low in her profile across the board. Do you have

experience with these types of products? I don't know if it is helping

A: I've been looking at the reference ranges on urinary tests. The

creatinine doesn't seem stable enough. Also the reference ranges are based

on adults, and the kids doing these tests are 2 and 3. Write me off list.

Q: What are some indicators that LOD might help a child...you have said

problem with sulfur supplements, urinary issues, what else?

A: Issues in speech (that's the area we see improve the quickest); a lot of

yeasty behaviors; if you've been on a lot of antibiotics.

Q: Can you tell us more about your work as a thinktank member? What is that

like? How do the members get together to share ideas?

A: It's been fabulous. There are a lot of totally dedicated people in the

think tank. The doctors compare notes, compare success stories, listen to

how other doctors solved problems for their patients, etc. We're getting

past our growing pains, and really accomplishing a lot. The internet really

helps, and the working relationship between doctors and parents.

Q: I give my son 1 peeled pear and several peeled apples/ day - do you know

if oxalate levels are lower without the peels? It seems like some lists are

conflicting. Also, I've heard that food high in phosphate (such as peas i

think) may also cause problem. What would indicate that?

A: There may be issues with phosphate with some kids, I haven't looked at it

very closely. Even different varieties of the same type of fruit/vegetable

will have different oxalate content. Kiwi fruit has 100+ varieties. The

oxalates vary greatly between each variety. It may also vary depending on

the soil it was grown in. Some foods are always high; others vary.

Q: How long is it taking for kids to respond to the diet? Are any kids

reacting badly to the diet? What is the difference between oxalates and

" oxidants " ?

A: Astonishingly some kids show improvements in just a day or two.

Occasionally a child will start and have worse behavior. If you've been

really high oxalate and you remove them, oxalates get trafficked to the gut

and cause really high oxalates there. We've been experiencing with calcium

citrate and magnesium citrate, which are both anti-oxalate. The calcium is

important in the gut - if there is calcium in the gut, the oxalates won't be

reabsorbed in the body, they'll stay in the stool.

Oxalates are oxidants. And oxidant creates oxidative stress. Molecules that

are not supposed to be bound together get bound together during oxidative

stress. Proteins work differently when under oxidative stress.

Q: Do you know of any thing that may become an " enzyme " or " helper " for

oxalates? Like Petizyde helps with cross contamination gluten...

Also, what about IP6 - that helps break apart kidney stones???

A: We have to rely on our bacteria - it breaks oxalates apart. There is a

company trying to make a probiotic, but it is about a year out. The enzymes

available are not what we need to break oxalates. Acidophilus is an oxalate

eating species, but if you get too much oxalate it kills off acidophilus.

I'm not familiar with IP6.

Q: I have heard the NAC is helpful in detoxing poisons such as mercury (not

a chelator but aids in ridding the body of these chemicals) My daughters

doctor said there are too many negative side effects but I recently realized

that she takes NAC 100mg a day in her D-Hist supplement for allergies. She

seems fine should I look into giving her more NAC since it seems that she is

tolerating it with the D-Hist? Also is LDN something that is helpful? My

daughter is 6 and non-verbal autistic.

A: We have had folks doing both LDN and low-oxalate diet. One of our parents

had such good results on low-oxalate that she stopped LDN. It may be they're

working on a similar system, it's too early to know.

The one consistent thing in autism is that sulfur is below the reference

range. We need to explore the role of oxalates.

Q: On the diet, is the ultimate goal to do LO foods and then you may have a

certain percentage of MO foods that child tolerates and never high oxalate?

A: We're trying to let the children tell us. We know oxalates are a problem,

but from child to child there are different levels of absorption and other

differing factors. We do know that the kids that stick to low-oxalate foods

are doing very well.

Q: Do you know if whey is high or low oxalate and if it can help with

oxalates? Also, you mentioned using calcium and magnesium citrate at first.

Should the child get regular doses or megadoses?

A: We're learning about the cal and mag citrate. Start low and slow. There

was one child that started having worse seizures after the cal citrate, but

overall she had less seizures on the low-oxalate diet. It seems the kids do

better to be on the diet several weeks, then start the cal citrate. If you

start the low-oxalate diet and see behavior issues, you might want to try

low dose cal citrate.

Q: You mentioned issues with speech. Have you had non-verbal children begin

talking on the diet?

A: We haven't had someone non-verbal try it yet. We had a child who could

speak a few words, and a week into the diet was talking in 4-word sentences

and making good eye contact.

Q: Can you talk a little more about children who have problem digesting fats

and oxalates?

A: The idea of taking calcium in the meal is to bind the oxalate so it's not

absorbed.

The bound calcium in spinach is not a problem, it's the free oxalate that is

a problem so take calcium with it. Even better, leave out the foods with

high oxalate altogether.

Q: 1) what might help with dyspraxia and motor planning? 2) how are people

deciding what might be low oxalate if there isn't a test on that food?

A: We have a scientist willing to test foods that are common in the autism

community. You can list the food that you want tested on the group

website, and he will test.

We have had children improving in motor skills. We totally did not expect

that gain. One of the children went to see his grandparents, and they were

astonished at his motor skill improvements, and all his improvements.

Scientists have shown there are oxalates in the brain. There are probably

certain areas of the brain that are more vulnerable. The autistic kids might

have areas of the brain influenced by oxalates.

If your oxalates are higher outside the cell, you might be dragging sulfates

out of the cell. These are the areas you would expect to see more functional

problems.

Hippocampus and cerebellum are two areas that are problem areas in

autism.and have high oxalates.

Q: Are pumpkin seeds particularly good for oxalates? Are oxalates related to

autoimmune?

A: Most seeds are a problem with high oxalate, but for some reason pumpkin

seeds are not. Some of our moms grind up pumpkin seeds to make flour.

Autoimmunity relates to the body making antibodies to bind things that the

body will get rid of. If you have an injury, the body makes antibodies to do

a clean up. In autoimmunity, something keeps the reaction going, the clean

up keeps going.

It could be that a lot of these processes could be cut back if we reduce

oxalates.

Q: Would a GRADUAL transfer to LOD possibly avoid the potential release of

oxalates from the tissues in to the gut that causes initial worsening of

symptoms.

A: I don't know, it's kind of a tradeoff. Like chelation, some folks go

slower then others.

Q: My son had a urinalysis which showed urine cloudy, crystals-present and

_morph Ur 4+ is any of this significant-he's 8 yrs. old.

A: It could be calcium oxalate. There are a lot of internet sites where you

can look up, but calcium oxalate is one of the major ones. Certain crystals

will dissolve certain substances added to them. If you refrigerate urine and

it gets cloudy, it's probably crystallizing something.

Q: Can you talk more about how the cerebellum is affected? My son has mild

hyperplasia of the cerebellar vermis so I am interested

A: The cerebellum is a modulator of info for the rest of the brain, a

traffic cop. You can actually get by without one (a cerebellum), but if the

one you have isn't working right, it can really mess you up.

One of our best responders did really well for a month, then had a bad

diaper and terrible behavior one day. Afterwards he said his words were

stuck. Maybe the reason some of these kids aren't talking is not that they

don't have language, they just can't get it out.

Q: , thank you so much for your work in this area. We think we're

seeing the light at the end of the tunnel for GI pain in our daughter! Will

this be a topic at the next DAN! ?

A: The oxalates will be mentioned by Maureen Mc, and Jacquelyn

McCandless, but it will not be a feature this time at DAN! The first tests

were in June, and the conferences are planned well in advance, so this is a

little too new. I am going to do a session, there will be a room set aside

to talk about issues that are not part of the main conf. I'll be in that

room.

Q: Have kids who were not able to tolerate TMG before the diet able to

tolerate after?

A: I don't know that we've had anybody that happened to, I don't recall

anyone saying that. If excess glycine was causing a backup, that might not

be addressed by the diet. Some kids have GI issues and inflammation; they

are absorbing more oxalates from their diet. Some kids have weaknesses in

pathways; they might be producing more oxalates. This will take a lot of

sorting out.

I'm not satisfied with current testing either, so we need to recruit

scientists, laboratories. There is also work needed to characterize enzymes

that were studied in the 50's and 60's. The research is so old, the studies

need to be redone. This will take fundraising and serious organizational

push.

Re: DAN! conference in D.C.

Holly,

Could you explain a little about the Low-Oxalate diet? What does

it have to do with autism? Sorry, but I have never heard of this.

Thank you, Donna

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Autism One Radio had a broadcast about the low oxalate diet recently. Here's the URL: http://autismone.org/radio/default.cfm?archive=848 & bg= & FromA1 Aasaddztmz <ddztmz@...> wrote: Holly,Could you explain a little about the Low-Oxalate diet? What doesit have to do with autism? Sorry, but I have never heard of this.Thank you, Donna> >> > Hi , did you get to hear any info on the Specific > Carbohydrate> > Diet? That might make a lot of sense for your kids based on

what you> > said. We are in our 5th week of it with my ASD son and fairly NT 3 > yo> > with bowel issues that rival my ASD kid's. We had already been 2 > years> > strict GFCF, with good results but messy poopies still. SCD have > really> > improved the bowel issues.> > > > > > > > SCDiet <http://www.scdiet.net/> > > > > http://www.pecanbread.com <http://www.pecanbread.com/> > > > > > > > > Feel free to email me off list if you'd like.> > > > > > > > Becky> > > > > > > > > > > > > > Now for the other advice part, after three weeks of removing all

> rice> > > > > products, we made tremendous progress. No more runny noses and > loose> > > > > stools. But then I added Quinoa and potato noodles. I now have to> > > > > remove both as Sam has loose stools and they both have runny noses> > > > > once again. BLAH! What's a mom to do? Any advice?> >> > > > > > > >

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In a message dated 4/9/2006 10:09:50 PM Central Standard Time, gillespies62599@... writes:

Has anyone experienced this many food allergies or reactions. Yes, I know with an overabundance of yeast and leaky gut that their systems are fragile. We are still working on these issues.

Yes! I kept a food diary for my son for a full year and still could not figure out exactly what irritates him. One thing would cause a reaction one time and next time - nothing! I've come to believe that with an inflamed gut just about any food can cause problems. We're still working on it, too.

Good luck,

Becky

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Great news, sort of, the quinoa was affecting one twin and the

potatoe noodles were affecting the other twin. Back to formed stools

and no more runny noses. Whomever I spoke with at the DAN!

conference, told me that rice and white potatoes are both starch and

that due to the overabundance of yeast, that my twins could not break

down those starches. That woman was absolutley correct. As far as

quinoa, I am still puzzled. But our guys are showing loose stools and

runny noses with their food allergies. Now, they are on a really

limited diet of meats, veggies and fruits. And yes, we use enzymes

and no fenol with every meal and we use probiotics with every meal.

www.babyhomepages.net/thegillespiefamily/

>

> In a message dated 4/9/2006 10:09:50 PM Central Standard Time,

> gillespies62599@... writes:

>

>

> > Has

> > anyone experienced this many food allergies or reactions. Yes, I

know

> > with an overabundance of yeast and leaky gut that their systems

are

> > fragile. We are still working on these issues.

> >

>

> Yes! I kept a food diary for my son for a full year and still

could not

> figure out exactly what irritates him. One thing would cause a

reaction one time

> and next time - nothing! I've come to believe that with an

inflamed gut just

> about any food can cause problems. We're still working on it,

too.

>

> Good luck,

>

> Becky

>

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Guest guest

,

Quinoa is probably very high oxalate, though I don't think its seeds

have been tested. http://www.wellnesshealth.com/default.asp?id=6

Potatoes are also high oxalate.

It is the experience of our listmates on Trying_Low_Oxalates that

oxalates do cause diarrhea in some children, and it stops when the

oxalates in the diet are reduced.

> >

> > In a message dated 4/9/2006 10:09:50 PM Central Standard Time,

> > gillespies62599@ writes:

> >

> >

> > > Has

> > > anyone experienced this many food allergies or reactions. Yes, I

> know

> > > with an overabundance of yeast and leaky gut that their systems

> are

> > > fragile. We are still working on these issues.

> > >

> >

> > Yes! I kept a food diary for my son for a full year and still

> could not

> > figure out exactly what irritates him. One thing would cause a

> reaction one time

> > and next time - nothing! I've come to believe that with an

> inflamed gut just

> > about any food can cause problems. We're still working on it,

> too.

> >

> > Good luck,

> >

> > Becky

> >

>

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Guest guest

,

Thank you so much and I have looked over the LOD list that Becky

Simpson kindly sent me. I will be implementing this diet with the

boys. I am still trying to figure some things out though. Carrots are

a MH but don't seem to affect the boys. According to my sheet, sweet

potatoes are E and don't seem to affect the twins. Is there a

specific reason? Again, I am trying to figure out what to feed them.

And I do notice right away any reaction. You may email me offlist if

you'd like. Our guys do have alot of yeast, Sam more than Steve. Both

have leaky gut, dysbiosis and malabsorption. I will be following

rotation every 4 days but they are so limited now so how do you do

rotation? Also, what is the corralation between oxalates and phenols,

if any? I have noticed that many food high in oxalates are also high

in phenols, like spinach and blueberries. With No Fenol, I can

actually add back spinach and broccoli. I am very interested in

finding out all I can. I have also been more aggressive with our

yeast protocol after here Sid Baker discuss yeast at the DAN! Thanks

so much for all of your help, my little guys appreciate it.

www.babyhomepages.net/thegillespiefamily/

gillespies62599@...

> > >

> > > In a message dated 4/9/2006 10:09:50 PM Central Standard Time,

> > > gillespies62599@ writes:

> > >

> > >

> > > > Has

> > > > anyone experienced this many food allergies or reactions.

Yes, I

> > know

> > > > with an overabundance of yeast and leaky gut that their

systems

> > are

> > > > fragile. We are still working on these issues.

> > > >

> > >

> > > Yes! I kept a food diary for my son for a full year and still

> > could not

> > > figure out exactly what irritates him. One thing would cause a

> > reaction one time

> > > and next time - nothing! I've come to believe that with an

> > inflamed gut just

> > > about any food can cause problems. We're still working on it,

> > too.

> > >

> > > Good luck,

> > >

> > > Becky

> > >

> >

>

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Guest guest

,

This isn't an allergic reaction, so if you have been eating a lot of

oxalates, you will probably not react to high oxalate foods. Once you have

been low oxalate for a considerable time, you may then be able to recognize

" oxalate reactions " to these foods, but the amount of oxalate being added

by a new food you are eating may be insignificant compared to what is

already in the body and irritating cells. Perhaps this is similar to how

adding a bit of water to a wet sponge doesn't change much, but adding water

to a dry sponge makes a big difference. Pain somewhere in the body that

develops slowly, or diarrhea or constipation are somewhat typical reactions

to oxalate. That pain can be remote, like leg or foot pain or urinary

issues like an increase in urinary frequency or pain on urination. The only

really obvious reaction seems to be if the oxalates themselves are causing

pain in the gut because the gut is already inflamed and injured.

There is a bit of tolerance that develops that may keep these symptoms

down, but it is a bit like Sid Baker's " Tacks Laws " . He says that if you

are sitting on four tacks, that removing one tack will not produce a 25%

improvement in how you feel. Removing the whole lot WILL produce

relief. Even so, we cannot do an oxalate-free diet, as there are not

enough foods that have negligible oxalates, and our bodies make oxalates

themselves and secrete oxalates to the gut on purpose. That is why we call

this a " LOW " oxalate diet and not an oxalate-free diet.

Oxalate problems develop when oxalate, a substance which is normal to the

body, loses its ordinary ways and rates of disposal, building up to toxic

levels in cells. Oxalate's toxicity is all in the concentration it has in

a particular compartment. Where it ends up in the body has a lot to do

with transport issues...It lands in places where it has the most

access. What may be different about autism is that perhaps it is getting

access to the brain in ways that are not usually seen in kidney

disease. The improvements we are seeing on the neurological side lend

credence to that hypothesis, but of course, this possibility will have to

be examined by scientists.

You also may not be aware that oxalate is an end product of metabolism for

us humans. That means not only can we get it from food directly, but we

can end up making it out of protein, carbohydrate or fat. Once anything is

metabolized to oxalate, we humans don't have a disposal pathway for turning

it into something else, so we have Plan B. We send it for secretion either

to the kidneys (so it can be expelled in the urine) or to the intestines

where it can either be broken down by flora or excreted in the feces.

There may be something that is not working right at either of those sites

of disposal. The kidney has a lot of chemistry devoted to rendering oxalate

harmless to the kidney when its concentration gets high in the

kidney. Those mechanisms are broken when someone has a tendency to develop

kidney stones made from oxalate. Some kids with autism have kidney stones,

but they tend to be older, like at least six or seven. It probably just

takes that long for the stones to get big enough to be noticeable. It

seems the kidney stone issues are pretty rare in kids on the spectrum, but

what is not rare is the bowel issues. Oxalates (even from food) like to

bind to injured tissues wherever it finds those injured tissues. Once it

has found an injury, the oxalate can bind and then, grabbing up some

calcium which is nearby, it can form crystals with jagged edges which can

cause addictional pain. Oxalic acid itself, not bound to calcium, is very

burning to tissues. Once absorbed into cells oxalate can induce oxidative

stress, depleting reduced glutathione and even turning on inflammatory factors.

I know this is a long explanation, but it is important to see the diet in

context with whatever else is happening or should be happening in the body.

There is a reasonbleness behind why oxalate may be secreted to the gut when

its levels are high in blood. Our bowel flora is supposed to contain a

population of bacteria that DOES metabolize oxalate, turning it into

something harmless. Among the flora that can break down oxalate are

lactobacillus acidophilus and bifidus which tend to be inculded in

probiotics. There are differences in these strains and in their ability to

break down oxalates in the gut. One scientist told me that his unpublished

experiments found that the most capable probiotic for breaking down oxalate

is a product called VSL#3. This product was designed for people with

inflammatory bowel conditions or people who have a " pouch " , but many of our

listmates on Trying_Low_Oxalates are using this probiotic, and some are

even making their own yoghurt including this product as part of the

starter. That is working well.

Unfortunately, the most important bacteria for this job of breaking down

oxalates is not contained in these probiotics. It is called oxalobacter

formigenes. There have been studies showing that people with kidney stones

tend NOT to have a proper colonization of oxalobacter formigenes. A

company called Ixion therefore began developing a probiotic of this

beneficial gut bug, but they have run into some difficulties, so it is not

on the market yet. This gut bug is a patented product already, and is

therefore considered a drug, so it will probably be sold by pharmacists

when it does get on the market. Unfortunately, it is known that very

normal antibiotics kill off oxalobacter but it seems that once killed off,

it is really hard to get it to recolonize.

I know, , that I went far beyond your question, but this was so

that you could get a feel for how this issue of decreasing the oxalates in

the diet goes beyond just cutting out foods as if you had an allergy to

them. What needs to happen is stopping the process of adding much more

oxalate to your cells that were already containing oxalates that came from

food and travelled the body to join the already elevated levels of oxalates

in cells. As long as there are lots of oxalates going into cells, the

cells are not going to react dramatically and they are also not going to be

persuaded to get rid of the oxalates they contain, so whatever negatives

are there because of the oxalates that may be hard to recognize will just

continue in the status quo.

When we started this project, all we knew was that the science would

suggest that the bowel issues in autism may lead to excess absorption of

oxalates from food and that some children with autism may also be making

excess oxalates because of certain vitamin deficiencies, like B6 and

thiamine. We didn't know where those oxalates were going or if they were

causing problems. It was a joy to find that lowering oxalates began to

initiate such global improvements now in many, many children. Our project

is only ten months old, so the only improvements we have been able to see

so far are those that come within ten months of starting a diet which

restricts oxalates to much lower levels. We already know that improvements

have continued in kidney patients even after several years of removing the

source of excess oxalates. That makes me hope there will be more pleasant

surprises ahead!

Our biggest challenge has been how few foods a lot of these children were

already eating, so that cutting out any foods means that new foods have

needed to be introduced to make up the deficit. Adding in rotations of

foods makes this even more challenging. However, the good news is that a

lot of the children going low oxalate have lost a lot of food

sensitivities. We think if this eventually heals the leaky gut, then these

food intolerances will go away altogether. I hope that will happen!

Chemical engineers describe compounds made up of both phenol and oxalate,

but these have not been explored by biologists or biochemists. so we don't

even know if these compounds are good for us or bad for us. This will have

to be part of our project as we go along.

I'm very encouraged that this diet does seem to offer a lot of help for

those with chronic yeast problems and we don't really know why. I hope

that it can do the same for your little guys.

With best wishes,

At 04:24 PM 4/14/2006 +0000, you wrote:

>,

>Thank you so much and I have looked over the LOD list that Becky

>Simpson kindly sent me. I will be implementing this diet with the

>boys. I am still trying to figure some things out though. Carrots are

>a MH but don't seem to affect the boys. According to my sheet, sweet

>potatoes are E and don't seem to affect the twins. Is there a

>specific reason? Again, I am trying to figure out what to feed them.

>And I do notice right away any reaction. You may email me offlist if

>you'd like. Our guys do have alot of yeast, Sam more than Steve. Both

>have leaky gut, dysbiosis and malabsorption. I will be following

>rotation every 4 days but they are so limited now so how do you do

>rotation? Also, what is the corralation between oxalates and phenols,

>if any? I have noticed that many food high in oxalates are also high

>in phenols, like spinach and blueberries. With No Fenol, I can

>actually add back spinach and broccoli. I am very interested in

>finding out all I can. I have also been more aggressive with our

>yeast protocol after here Sid Baker discuss yeast at the DAN! Thanks

>so much for all of your help, my little guys appreciate it.

>

>

>www.babyhomepages.net/thegillespiefamily/

>gillespies62599@...

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