Flor

The manufacturer info sheet on the Thorne SF722 says it's entirely "10-undecenoic acid" which is made from castor bean oil.

Some folks on the yahoo group are taking it and say it's helped. I'm trying to find out if it's low oxalate -- I'm thinking castor beans are in the legume family and pretty much all high oxalate, but maybe I'm wrong or maybe the processing of this stuff takes out the oxalates?

People over there are also doing goldenseal for yeast and some other thing that sounds like "biocidal" but I don't think I have that right. Anyone here use goldenseal?

Nora, That's a pretty interesting site!

Has anyone tried the supplement she says did the thing for her (on top of the diet)? Formula SF722 by Thorne Research? I wonder what's in it? She says Amazon sells it, so maybe they say -- I'll go look.

I was about to try Three-Lac and a ton of people over on the yahoo site give it to their kids. But she says nothing good about it.

By the way, there's a very interesting "yeast" thread over at the trying-low-oxalate yahoo group -- it re-surfaced in the last day and has a pretty interesting discussion of how oxalate and yeast problems are related. A lot of folks there say that sticking with the LOD also got rid of their yeast problems.

Florence

Judy,

Let me know if you can't get on again this time -- you can also email the moderator, Susan Owens, because I know she wants us to be in the group. If that doesn't work, let me know and I'll email her.

I really do find that site helpful. Susan is the only one I know doing systematic research on the LOD, related supplements, and side effects. She's also just a sharp scientist type who has access to medical research I don't have access to. She can speak understandably about things like the methylation pathway, the role of sulfur, etc.

When you do sign on, you can choose to get every new message or choose to get just a daily summary emailed to you, or neither. I like getting the daily summary but not every single new message.

The discussion between parents is useful too because a lot of it is about tweaking the LOD to fit their needs and they mention foods I wouldn't even know to try -- like pumpkin seed butter and chestnut flour.

Keep me posted!

P.S. This is so weird, but there's a lot of talk on there of "penis pain" among the parents of the autism spectrum kids. I'm pretty sure that's the boy equivalent of vulvar pain...which I've NEVER had before until last week. So I'm pretty sure this is continued oxalate dumping, esp. since the VP Foundation is all about LOD. Their site, by the way, has some pretty interesting stuff about supplements -- they have a specific LOD protocol that we all should probably take a look at and see if there's anything there we haven't thought about.

A lot of folks over at the yahoo group are taking "ThreeLac" for yeast -- does anyone here have experience with that?

Rachel, have you tried grapefruit seed extract? Is caprylic acid the best thing you've found so far -- I mean, like you think it works? Any idea if it's high oxalate or no?

Is there a thread on this board that deals just with yeast issues, anyone know?

Thanks!

Florence

That's helpful about the grass-fed beef -- I wondered if it would avoid the fungus problem.

What do you do naturally for yeast? I was wondering whether grapefruit seed extract was low or high oxalate. Any idea?

Any of you do aloe vera juice?

Hi you all. Me again.

I posted a note over at the trying low oxalate diet yahoo group just saying that I'd seen improvement in the last month on this diet and asking some questions about symptoms I was having (more on that below).

Susan who moderates the site said she hoped the rest of us on this thread would post over there with all our experiences. Susan's been going to celiac conferences and trying to bridge these two worlds (autism and celiac) and she said it seemed to her that this oxalate information hadn't gotten over to the celiac community yet. I think she's a real ally and good source of info for us.

Anyway, if you get a chance, would you drop a note over there with a little information about your specific experiences on LOD?

There are parents over there who do the LOD with their kids and who have a wealth of information about supplements, recipes, etc.

One mom over there doing LOD said they also follow Dr. Semon's yeast-free diet and that going LOD also caused them to increase sugar intake. I know now my yeast problems have increased and that I have to deal with that next. Have any of you done Nystatin? Who else here has yeast problems and what do you do for it?

Side note on this: Dr. Semon apparently discourages a lot of meat eating because the feed for animals is often aspergillus-contaminated...which contributes to yeast problems. Rachel -- maybe you know more about this?

I have a new oxalate dumping symptom -- vulvar pain! I had no idea what it was and have never had it before. I went to VP Foundation website which has more useful LOD info if you all haven't been over there. Anyway, Susan confirmed it's likely a dumping symptom.

It does seem that the same symptoms that were making us sick eating high oxalates can also be dumping symptoms simply because not eating oxalates forces the oxalates that have built up in our cells to come out and cause trouble just like they did when we were eating them. My experience has been though that the dumping symptoms are less GI whereas the eating oxalate symptoms were more GI -- which makes sense given that oxalate dumping means it's coming out of cells elsewhere in the body rather than coming in through the GI tract.

Oh cwap about the reeses peanut butter cups. They're SO SMALL! And I only had ONE when I really wanted ONE HUNDRED. Oh well.

I'm tired of what's her name's (Jennie's?) macaroons.

Have any of you found your sugar intake increase with LOD? A lot of the non-sweet food I used to eat (nuts, grains, spinach, etc) are off-limits now and the stuff that's replaced it is sweeter. I feel more yeasty somehow.

I feel somewhere inside of me I need to stop sweet things altogether -- sugar added, honey, fruit. But my god, how to stop EVERYTHING? I'm sure fasting would be the cure! Any folks on here do fasting as a way to let the gut rest?

Hi you all!

I'm about four weeks on the diet now and am starting to lose my resolve too. I had one mini reeses peanut butter cup, I went to the movies and ate popcorn. The popcorn actually seemed to help move things through.

I had a week or so with no shin burning or other "dumping" symptoms, but yesterday and today the shin burning is back mildly and my joints are more sore. Also more gas. Maybe I am being punished for pushing the boundaries.

Also, I hadn't been eating beef at all and then I had some the last few nights. Is it lectins in beef that cause the inflammation?

So, I need to get back to the strict diet again.

I was reading stuff about aloe vera juice over on the "trying low oxalate diet" yahoo group. Have any of you tried it? Aloe vera is apparently low oxalate and some folks have found it helpful for gut healing.

A couple other questions:

Are any of you able to tolerate corn? I've been staying away from it, but it's hard to only eat white rice all day, and then feel like I really shouldn't be eating white rice at all.

I need to understand more about the role of sugar in oxalate formation. It seems to be implicated. I think my sugar consumption has increased since going LOD and that I'm having some more yeast symptoms. I keep jumping from one problem to another!

Finally, does anyone know anything about Low Dose Naltrexone? www.lowdosenaltrexone.org -- seems to be the cutting edge of auto-immune disorder treatments. Is there an area on this site where people are trying it?

Hope you all are doing well today!

Florence

Hi you all. I was just having a moment of gratitude...

Here I am three weeks into this LOD and I feel better than I have in two years. I am still cautious about making proclamations but this feels like real progress.

I was ELATED about how I felt after I went gluten-free last year, but the benefits only lasted about three weeks, and then soy free (I'd already been dairy free), and those improvements were short-lived too. I think now because I had replaced everything with nightshades and oxalates.

My shins aren't burning as much as they did last week, my energy is better. I'm definitely not 100 percent by any means, but SO much better than I have been.

I am SO glad I stumbled on this nightshade and LOD stuff. I'm trying to remember now where I first read about the LOD on here. Does anyone remember where this first came up on here? Was it Robbin? Something buried in that previous nightshade thread by the guy who wrote that book?

I'm back to feeling like we should post a banner for all newcomers to the celiac.com website warning them about nightshades and oxalates while their wounded guts are trying to heal.

Let's hear it for still being a work in progress!

I think testing our "resilience" at any given point is a good idea and gives a real sense of how far down the healing road we have come.

I haven't eaten anything high oxalate and hardly medium oxalate in two and a half weeks. But last night I put a little salsa into the buffalo meet I was making (nachos for the family, over white rice for me). Salsa is both high oxalate and with nightshades!

And this morning my poop was like the old days -- dark and black specks and heading towards diarrhea.

So I guess for me at the moment, I'm not into the resilient zone yet! I almost risked trying one white tortilla chip last night and am glad now that I didn't.

But, I feel motivated to stick with it because I feel SO much better now that I've made it past the first week or so of really bad oxalate dumping symptoms.

Hey, side note: could someone explain to me what herxing is? I see reference to it all over the board but didn't know what it was.

Just FYI you guys, I was googling around about biotin deficiency because I was curious what the causes and symptoms were, now that I'm taking the supplement.

Here's a decent link, but there are longer articles out there as well in the med journals:

Open Original Shared Link

A couple of interesting things:

1. They don't know a lot about biotin compared with other vitamins

2. It is manufactured by the intestinal flora (unless of course yours happens to be messed up)

3. Antibiotics are one major cause of biotin deficiency

4. Deficiency symptoms include FUNGAL infections (which they say often clear up independently after the deficiency has been addressed; depression; skin problems; thinning hair; and various kinds of muscle and nerve pain

Hmmmm.......

Patti,

Glad to hear you're feeling pretty well too! It sounds like maybe a little more resilient to the gluten trouble too!

I ate Thai food out last night -- the first "out" food I've had since the LOD. It was just rice noodles and broccoli, but in the old days, just the different spices would have made me sick and given me D the next day. And I feel fine this morning.

If you go to www.vsl3.com I think they have FAQs that explain about the dairy. What I remember is that they use dairy to cultivate the probiotics but then remove the dairy afterwards. They can't claim it is entirely dairy free because there might be trace amounts left, but they call it non-dairy maybe? Or vice versa? Anyway, I put about a tablespoon of cow milk in my one cup of tea a day, so I figure whatever "trace" is left in the VSL3 isn't going to be significant enough for me.

I look forward to hearing how others are doing too!

Florence

I just wanted to add, now two and a half weeks into the LOD that I really am feeling better! I don't want to make pronouncements too early, but this is the first time since I got sick over two years ago that I have felt this good.

I continue to be VERY hopeful about all this!

By the way, I seem to be tolerating the VSL3 just fine (now I'm wondering if my problem with the previous probiotics I took was just that I was eating everything else wrong.)

Best to you all,

Florence

G'morning everyone! It's so great to be able to read about everyone else's experiences.

It's not so easy doing this LOD alone, so it's really helpful to feel part of a larger group even if we're not all in one place!

I'm going to post this calcium-magnesium question over at the yahoo group and see what Susan says about it.

Here's an interesting exchange from over there this morning -- some of you might find the entire thread that this came from worth looking at, as well as doing as Susan suggests and looking through the archives for "dumping":

"Re: [Trying_Low_Oxalates] Re: wide range of neurological disorders with celiac disease

Cynthia,

This does sound like "dumping" to me, and the timing is just right. Please

do a search of the archives on "dumping" and I think you will be reassured

that nothing so far is unusual! Oxalates do get into synovial fluid and

joints and can cause pain. I don't know where he might have been stashing

away oxalates on previous diet, but THIS diet tends to moblize body stores.

You might find that taking VSL#3 or another probiotic and arginine will

decrease negative symptoms.

Best wishes and may you see some new wows soon instead of ows!

Susan

At 08:47 PM 10/6/2007, you wrote:

>Diane,

>

>Thanks for your encouragement to stick with LOD, although we are just

>starting. Congratulations, too.

>

>However, since May, we've had my son off almost all fruit, (per BED for

>yeast) and since starting with giving him more fruit from the LOD OK

>fruits lists, he's been experiencing more temper tantrums (not really

>common for him), and a red anus, which he said was an "ow ow," AND runny

>stools. SO...we decreased his fruit intake again, and he became

>constipated, (not uncommon for him) saying his "tummy hurt," and finally

>he went BM a couple times over the last two days.

>

>NOW, this is new: also over the last couple of days, he keeps pointing to

>his outer thighs, and saying "ow ows," and also saying "knees hurt." Is

>this sort of scenario typical for starting the diet? I'm wondering if this

>latest leg pain is part of oxalate dumping that I've read about on this

>list. ?? Or maybe it's part of his pronated feet hurting hips and knees?

>I've removed his almonds/almond milk and blueberries that he was eating

>almost daily. It's been about a week or so.

>

>Thanks,

>Cynthia"

Back to my words: So, I'm just over two weeks into the LOD. I would say the first week was by far the hardest. I haven't had diarrhea once since I started it, though I wouldn't call my poops normal yet either. They are always yellow (which I assume is bile showing through absent dark colors in the food I eat?). And still terrible intermittent gas -- maybe broccoli is the problem? There are so few vegetables we can eat!

The shin burning was pretty bad for about five days but now seems to be backing off. Foot and hip pain worse some days. And pimples out of nowhere.

So it still feels like my body is getting bad stuff out.

I've only done a few days on the VSL3 so can't say much about that yet. Their material says one might start to notice improvement on it in a week but full benefit in three weeks.

I think overall my energy is getting better, which feels huge.

More soon!

Florence

Judy,

Do you not supplement magnesium at all?

I'm wondering if it's giving me D as well but there's all this stuff out there about an imbalance between Mag and Cal creating absorption problems of its own.

I used to get the black flecks too. Not since going LOD though.

I've read in books and had doctors ask about the "ground coffee" because they say that's indication of dried blood in the stool.

I'm not sure whether these black flecks are the same.

I had stool tests done with those black flecks and I assume (bad idea?) that if it had been blood, they would have said something?

My whole life, I used to catch EVERYTHING that went around and it would be worse and last longer generally.

All that stopped after the terrible case of rotavirus I got two and a half years ago (which came in the midst of all the sleep deprivation after my son was born, mastitis, and three rounds of antibiotics). I date getting chronically sick from that time.

Since then, I don't get anything. When people in my house get colds, I might get a mild sore throat for a day and then it never develops into anything.

I wondered about this too and figured that it was due to my immune system being overactivated.

It's interesting to hear this has been the case with other folks!

I will keep trying on the quote thing -- I can't quite get it to work.

On B6:

I found this site a helpful overview about the importance of B6:

Open Original Shared Link

I went looking because I have been nauseated the last two days -- and that's never a GI symptom I have (I get all the other ones).

It turns out that the new supplements I've added all come along with B6 in them and cumulatively I was taking 26 times the RDA of B6 -- 2600 mg. Various things say people start to get neuropathy at 500 mg. Ooops.

So, thought I'd post this in case anyone else needs to check what levels of B6 might be lurking in their other supplements.

Sorry, how do you guys do that "quote" thing you do?

Those were Rachel's words at the beginning of my last post.

Also....anyone know if uric acid has anything to do with oxalates??

Lab results from 2004 have abnormal results for uric acid....the blood levels were too low rather than too high.

Guess I'm not at risk for gout but WTH??

What could it mean??

Rachel,

This just posted on yahoo group -- seems might explain your labs, or at least document that this happens. If the blood levels are low, then it may be they are trapped in your cells?

Listmates,

This aritcle points out that those who were collectng more uric acid in

kidney tissues were not the ones with the highest excretion of uric acid

but were the ones with lower excretion and a higher serum to urine uric

acid ratio. We may see something similar in the autism population if

doctor's were to order the serum (or plasma) oxalate test. I am saying

this just so no one supposes that normal urinary levels of oxalate will

automatically mean that someone does not have a problem with collecting

oxalate in tissues.

Oxalate issues and gout or pseudogout issues can go together, but this

study was separating these issues.

Susan

Urol Res. 2007 Oct;35(5):247-51. Epub 2007 Sep

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Articles, Links

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Click here to read

Rinne! Oh my gosh what a road you've traveled! How did you get scarlet fever??? I thought people didn't get that anymore. Something new to worry about!!!

Rachel -- that's amazing news about biotin and candida. Double extra reason to try it out!

Patti -- funny, I had right hip pain worse for about a year and now it's on the left too. I read somewhere it's worse at night in general because our melatonin levels naturally increase in the wee hours and melatonin increases inflammation (which is why I had to stop taking it for sleep).

Judy -- are you taking a probiotic? That seems to be what the study says -- that the VSL probiotic helps get the oxalates out of the body.

Interesting thing last night -- after two and half days of nagging burning shin pain, it suddenly stopped last night right before I went to bed but was immediately replaced by an incredible itching on the skin right over the shin bone. The itching lasted about a half hour and then all was well.

I've also noticed passing extreme tenderness in the acupuncture points down the outside of my leg. They'll get incredibly sore for an hour and then not sore at all.

I wish I could SEE really all that's going on inside because it seems very busy!

Side question: someone on here mentioned that Oolong tea is low oxalate...can I ask what list that was off of? I really want to drink it but am afraid because all the lists I see show black tea as high oxalate.

Please forgive the info overload -- I'm out scouring for new stuff.

Below is an abstract from a 2005 Kidney International journal article...the probiotic they use in the study is made by the same folks (VSL) who make the VSL#3 that the "trying low oxalates" yahoo group recommends (and that just arrived on my doorstep and I'm going to start taking tomorrow).

"Use of a probiotic to decrease enteric hyperoxaluria.

Background

Patients with inflammatory bowel disease have a 10- to 100-fold increased risk of nephrolithiasis, with enteric hyperoxaluria being the major risk factor for these and other patients with fat malabsorptive states. Endogenous components of the intestinal microflora can potentially limit dietary oxalate absorption.

Methods

Ten patients were studied with chronic fat malabsorption, calcium oxalate stones, and hyperoxaluria thought to be caused by jejunoileal bypass (1) and Roux-en-Y gastric bypass surgery for obesity (4), dumping syndrome secondary to gastrectomy (2), celiac sprue (1), chronic pancreatitis (1), and ulcerative colitis in remission (1). For 3 months, patients received increasing doses of a lactic acid bacteria mixture (Oxadrop

Oxalates, gout and bone pain!

Hi you all, I was googling around to see what this shin burning pain might be about and came across some stuff about gout and "pseudogout."

It seems to me that the oxalate dumping might be bringing on gout-like inflammation and also that prior to LOD, joint inflammation could very well be oxalate-related in the same way gout causes joint pain.

Gout and pseudogout deal with other chemicals forming painful crystals (like uric acid) -- but they also lead to kidney stones and sore joints -- most notably that base of the big toe and big thumb joints! Seems like the same process at work here.

In our cases, let's hope it's transient while the oxalates get out. But I think that might be the shin pain as well. My left hip bursitis is also hurting more today.

The gout info online says it mimics rheumatoid arthritis symptoms.

Interesting!

No doctor's supervision with the VSL3 -- just trying it out.

Though I am working on getting a first appointment with a wholistic MD in Ashveville who has some experience with chronic gut problems.

I just bought two small boxes of the stuff and will take it slow.

Am also doing the LOD, calcium citrate, glutamine, biotin, zinc, fish oil, MSM and a multi-vitamin.

Will keep you posted!