Owens Notes from Bio Chat

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From: Downing

Date: Tue Oct 4, 2005 9:49 pm

Subject: Owens BioChat Notes

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 Instiute), 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 labwork, 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 @

yahoogroups.com. 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 sulfur. 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 yahoo 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

yahoo 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, noone 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 yahoo 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.