It seems that there are a lot of people interested in the effects that oxalate foods and nightshades may have on us. There have been threads here and there about both of these food groups, but someone suggested one thread so that we can all compare notes, share stories, etc. I thought it was a good idea, so here it is

I have gone "oxalate-lite", along with increasing my calcium intake. I'm also trying cutting out nightshades to see if that will help with some joint aches.

Since I have several other food intolerances, I'm going slow with this. I think the single most helpful thing for me has been the increased calcium--I take a 600mg Caltrate with each meal.

Jerseyangel, thank you SO much for starting this thread!

As you know, I've gotten hot on this topic in the last 24 hours after I stumbled on reference to it buried back on another thread.

I'd like a huge banner on this website somewhere for all new people that says: "Have you thought about nightshades and oxalates if you haven't gotten all better going gluten-free?"

I'm just starting the diet today, so I have no empirical news to report. But I can say that my diet since going gluten-free, DF, SF a year ago has consisted almost ENTIRELY of high oxalate foods with a steady stream of nightshades thrown in.

I have known for awhile that potatoes make me sick -- so sad because I worship potato chips. I mean, I wouldn't have to worship potato chips except I used to worship ice cream, and you know how it goes when the list gets smaller and smaller. Right now I am worshipping this particular brand of macaroons that is nothing but coconut, cane syrup, and egg whites. Eggs don't seem to bother me.

Of course potatoes are a huge ingredient in a lot of the gluten-free foods.

One of the most helpful sites I've found so far is: http://www.stillpointhealth.com/LowOxalate...Suggestion.html

They list a number of supplements that should help support getting the oxalates out as well as ones to avoid, at least temporarily.

I've also just signed up for the yahoo group called "trying low oxalate diet" -- you have to ask permission to get on -- but they seem to be doing a very systematic job of testing this out and gathering information, so it would be good for us to make sure what they learn makes it over here. They are doing it for autism spectrum disorder reasons, but of course a lot of the info is still relevant.

I hope everyone else out there who is trying to go nightshade and/or oxalate free will drop a note here so we can get a sense of where we all are in the learning process.

More soon no doubt!

WOW, incredible resource at the "trying low oxalates" yahoo group.

There's a word document in there called "mechanisms behind the leaky gut" that lays out in great detail how celiac disease is the model for understanding the damage that oxalates and other large molecules the gut normally protects the body from can cause when the gut is leaky.

It explains the key role of calcium in closing the open "gates" that one has with leaky gut. And how gluten works to open the "gates" to let other toxins through.

This is amazing stuff! I would cut and paste the entire document in here but it's too long.

I recommend anyone interested in this go to:
http://health.groups.yahoo.com/group/Trying_Low_Oxalates/
and sign up for the yahoo group and then go to their "files" section and click on "a resource for beginners" -- that word document and several other very useful items are in there. It only takes a few seconds to sign up for the group, but then the administrator needs to email you to officially give you permission to get in. It's TOTALLY worth it!

Thanks so very much to both of YOU
I have found this to be the precious key that I've been missing in the healing of my leaky gut.
glueless explained to me today why i could eat potatoes all those years and now are a problem.
I'm going to write her to come and please join us here.
THIS IS GOING TO BE A WONDERFUL THREAD AND I FEEL THE MISSING PUZZLE PIECE FOR ALLOT OF US.
JUDY IN PHILLY

MILK THISTLE:

One more little tidbit...

From reading over in the yahoo group I just discovered that Milk Thistle is very high oxalate. I have been taking it daily for almost a year because it was recommended to me for liver cleansing. YIKES!

I mention it just in case anyone else here is taking it.

Thanks for that link, Catesfolly I think I will sign up over there.

Judy --I knew you'd be interested in this. I hope Robbin joins us--we'll take good care of her She has such great info.

Thinking about the calcium link, I believe that it goes farther than the calcium binding with fluids in the colon to prevent D. It does that--no doubt, but I also feel that it goes beyond that--my anxiety is better and I'm thinking that means that the calcium is binding to the excess oxalates, too.

Before I started cutting oxalates and bumping up the calcium, I still always had constant, low-level GI distress. I kept blaming this food or that, for the random episodes of D and anxiety.

I know I have a leaky gut--undiagnosed Celiac for many years, multiple rounds of antibiotics and steroids over the years, and heavy asprin use. I have many additional food intolerances. It makes sense that even being 100% gluten-free, my gut needed more help to continue healing. I wasn't diagnosed until I was 49, and I just read recently (I wish I could remember where) that researchers are beginning to think that people diagnosed later in life have a much harder time healing. Some never completely heal.

my experience 'mirrors' your exactly Patti...good over view.
i just called robbin and told her of the link which i emailed her.
Catesfolly, funny you mentioned MILK THISTLE: robbin had been taking it and had to stop also.
I'm so happy for this thread.
going to sign in to the yahoo group also.
judy

I pretty much exist on tomatoes and I add in peppers whenever I can, but if I eat either of these with garlic my digestive system is trashed for a week. And I have issues with potatoes always. (Well, now always, not before this lovely venture into selective eating.)

I figure oxalates have something to do with it, but I'm curious to hear if anyone else reacts to some of them some of the time, and others all the time.

Jestgar,

I seem to have problems with the nightshades if I eat them several days in a row. I get mild stmptoms from potatoes each time, but it was much worse a couple weeks ago when I had mashed potatoes one night and then spanish rice (tomato, lots of green pepper) the next night.

After that, I was sore for days.

This is still surprising since I just began to have problems with potatoes--they had been a comfort food for me.

On the one hand, I can eat rice and corn now, only to lose the nightshades

Hi TVHF,

I can't take magnesium in a suppliment as it always causes D. I do eat foods rich in magnesium, though. Is that enough considering the high amount of calcium I take?

I originally began taking the calcium to counteract the D, and then started looking into the oxalate after a friend had fantastic results with the low oxalate diet.

THANK YOU JERSEYANGEL!!! This is a topic I have been researching for a few months and put myself on the low oxalate diet after doing an "experiment" with an oxalate overload and feeling like death afterwards. I have had fibromyalgia for a long, long time as well as celiac/gluten intolerance and I just wasn't getting relief with the pain and intermittent D. I joined that yahoo group, too and was the one that got the response regarding milk thistle!!!
What I have experienced is nothing short of AMAZING!! I have had shedding of oxalates consistently since starting this diet in June. Foot pain that felt like walking on glass is gone, rib pain and fibrocystic breast pain is gone, hard layers of lumpy tissue is gone, painful lumps on legs are gone and even my face looks different because the hard tissue in the cheeks has gone and I am looking like myself again!! With each "dumping" of oxalate episode, I get tremendous pain in an area and extreme exhaustion and then after a day or so, a new and wonderful relief and improvement!
I take Vitamin Shoppe brand calcium citrate with magnesium -two capsules with each meal-each capsule has 333mg calcium citrate and 189 mg. magnesium.
From what I have learned, oxalates are normally digested by a good bacterium in our intestines called oxac. formigenes, and this good bacteria can be destroyed by antibiotics, perhaps vaccines, or long term intestinal illness. Once the bacteria is gone, you cannot digest oxalates normally and they cause a condition called enteric hyperoxalosis, which is a known condition by urologists and some of the more learned gastroenterologists. The oxalates form crystals which are attracted to tissue that has been damaged by injury or illness. Organs, muscles, even bone. Bacteria, such as lyme, or candida and metals bind with the oxalates. Excess vitamin C can be converted to oxalates in the liver. Oxalate crystals are in cataracts, thyroid, kidney stones, gallstones, and also are always present along breast cancer cells. Fibrous tumors of all kinds can contain them.
The probiotic O.formigenes is the only one I couldn't find in the health food stores BECAUSE it is now patented and being produced as a PRESCRIBED drug for treatment of kidney stones. Some good probiotics can help some, but the best and only way to control excess oxalates once you lose the "good bacteria" is avoidance of the high oxalate foods.
Google ENTERIC HYPEROXALURIA and illnesses like thyroid and oxalates, or gallbladder and oxalates, or celiac and oxalates and you will be AMAZED at the studies and information. I really feel that it is what is known as FIBROMYALGIA and IBS, but that is only my UNDOCTOR opinion. My results speak for themselves to me!!!

Robbin,

Thank you! You were the friend I was referring to in my earlier post.

The way you explained it makes so much sense. This stuff just has to all be connected somehow--you are living proof! Especially for those of us with years of damage, this could at the very least be something to look into.

Please keep us posted on your progress--it's been amazing so far.

I forgot to add this--drink lots of water if you are going low oxalate-this is very important! Eight to ten glasses a day. The excess oxalates are shed in urine, through skin, eyes, & bowels. One thing I would advise based on my own experience is to try to get as much of your nutrients from food as possible. I eat two bananas every day to keep potassium levels normal and eat low fat to keep liver and gallbladder problems at bay as well. I also take a probiotic and once a week oil of oregano and milk thistle (with a calcium citrate cap since milk thistle is high oxalate, but really beneficial for the liver functioning). All of these I take with food. I would encourage anyone trying this to eat lots of the veggies on the low oxalate list and include lots of melons like honeydew and cantaloupe for the B vitamins. Hope this helps someone else, because I feel like a living miracle myself and want to tell the world, lol.

gluless is the poster formerly known as Robbin

I had immediate success with the gluten-free diet, then began to backslide - stopped eating corn, eggs and milk, and got much better. But it's been a slow, steady decline for several months now (more episodes of diahrrea and more fatigue)

So now I'm really interested in this thread and the information about oxalates. Just a couple weeks ago I decided to cut out potatoes after reading about this subject in another thread. I also stopped eating almonds. The result has been a normalizing of my GI problems and an increase in energy.

So, now I'm getting real interested in oxalates. I joined the yahoo group a few minutes ago and haven't yet been able to access the resources, but will do so as soon as I can.

Thanks for this thread.

Thanks so much Robbin for the in-dept but clear and concise details of a topic that can be confusing.............but ...............you made it so clear.
I too have found my tumors and hard bone protrusions getting softer and 'squishy' around the edges.
so appreciate the effort you put into all the time and research.
You sure have helped me.
Judy

The more I read, the more this makes sense. I have always felt that at my age it would take a very long time, if ever to heal. I was 45 when I went gluten free and had been sick for at least 20 yrs then, years that I can remember anyways. I have read some of you say--you went gluten-free and felt great, only to find in time that you developed another intolerance, just as I did. First it was soy after 3 yrs of gluten-free, then in a few months it was corn, and then the others seemed to follow much quicker--so much quicker, that my boyfriend at the time was afraid my body was going to reject all foods.

So, I have joined the yahoo group and will study up on this one. Thank you.

Hi Valda,

You sound a lot like me I'm really excited about this--I think all of us putting our heads together is going to work so much better. I tried last night to join the yahoo group, and gave up after it rejected about 8 usernames. I guess they already have a jerseyangel


Deb,

I've been following your posts lately and I'm glad you're looking into this. I keep thinking there is just a piece of the puzzle that we're not finding--yet

I read that you had a hysterectomy recently--I had one in January. I hope that you're healing well from that.

This brings up a good point--how many of us women have had a hysterectomy due to endometriosis or fibroid tumors? I wonder what role oxalates play in the formation of the abnormal tissue?? The problem with the tissue cultures that are normally studied after biopsies is that a normal biopsy is not done under a polarized light (from what I understand about the process, correct me if I am wrong, any histologists or lab path. people!!) An oxalate crystal formation will not show up under normal light conditions.

I forgot to mention the role of leaky gut-which I guess you all have gathered that the lining of the intestine is thinned and permeated by the celiac or other condition and oxalates damage further and circulate throughout the body.

One thing that I also take once a week is red marine algae tabs --this is widely used in other countries to bind with toxic metals and allow them to be eliminated through urine and bowels. Once you release the oxalates that are in your tissue, the metals and bacteria that are bound to them COULD be released from their oxalate bound sites where they have been residing and causing us untold misery! (not sure if calcium citrate keeps them attached to the crystals and then they are eliminated along with the crystals or not, still looking into this aspect of it all.)
Vitamin B6 is another very important aspect of the process in binding oxalates and healing. I have been trying to avoid my multivitamins, limit unnecessary supplements as much as possible, and eat as much B vitamin rich foods as possible since my digestion is still on shaky ground and I don't want to rock the boat at this point when I am getting so much better. So far this is working for me, but others may need to take more vitamin/supplements to help with their symptoms.

I read that the bacterium that digests oxalates, o.formigenes also produces a substance/enzyme that is very important in muscle health and process and that with a depletion of the o.formigenes, the important enzyme is also depleted. This would explain the fatigue and muscle weakness that so many of us have as well.

PATTI SAID
" I'm really excited about this--I think all of us putting our heads together is going to work so much better."

Good Morning all info seekers...

I have to say here that the --
'BRAIN STORMING' THAT PATTI AND ROBBIN AND I HAVE DONE THESE LONG PAST 2 YEARS HAVE CERTAINLY GOTTEN ME TO THIS HEALTHIER POINT IN MY LIFE'. THEY HAVE BEEN MY LIFE LINE WHEN I FELT I WAS READY TO GIVE UP.'

WE ALWAYS FELT THERE WAS A PIECE OF THE PUZZLE MISSING..........I'M PRAYING THIS IS IT.
I JUST KNOW THAT 'HUP' HOSPITAL TOOK MY TUMOR CELLS.. AND TRIED TO CULTURE THEM AND SENT THEM TO EVERY RESPECTED LAB IN THE USA AND THEY COULDN'T FIND A 'REASON FOR THEM'...REMEMBER WHAT ROBBIN SAID ABOUT THE TESTING--

The problem with the tissue cultures that are normally studied after biopsies is that a normal biopsy is not done under a polarized light (from what I understand about the process, correct me if I am wrong, any histologists or lab path. people!!) An oxalate crystal formation will not show up under normal light conditions.

.......ANOTHER AH- HA MOMENT.

I'M SO HOPEFUL THAT WE CAN ALL SHARE ANY INFO...ANY...WHETHER YOU THINK IT IS IMPORTANT OR NOT.......... IT JUST MIGHT BE A TRIGGER TO GET SOMEONE ELSE THINKING .....

THANKS AGAIN PATTI FOR DOING THIS.
HOPEFUL AGAIN JUDY....

My experience, too. However, I tried using a phase rather than a "name" and managed to register under "alotless4me" - thinking that my food choices are soon to be reduced again!

The resources for beginners is worth the hassle.

Two questions for you all:

Having eliminated gluten, dairy, soy, corn, nightshades, and now high oxalate foods, I'm wondering what everyone's experience has been with SUGAR?

Also, I'm curious about people's experience with "dumping" once on the low oxalate diet. How quickly did that start, what were the symptoms, and is this something that happens recurringly? And if so, for how long and how often? Is there any literature at all on this that people know of?

Happy weekend!

ditto........i was going to ask this too
judy

My questions, too.

Hi Robbin!!!!

Sorry I didnt get back to you (the pm is still in my box)...I'm horrible with pm's and emails.

I *have* followed your jourmal entries and its GREAT to see you are doing so well!

I guess I'm on as low-oxalate as you can get (by default).

Anyways to answer the sugar question...



I know...bummer huh.

That came from this site...in case anyone is interested.

http://www.drneubrander.com/Files/BioChat%...san%20Owens.doc

Its regarding low-oxalate used in Autism. Most of my research about this stuff is having to do with autism because its mostly the same issues I'm dealing with and I'm going through the same treatments.

I'm glad for this thread though (thanks Patti). Hopefully Robbin will stick around and share her experiences.

spent the afternoon looking on the low oxalate site trying to find a link for dumping and didn't find it but did find this.....anyone..robbin...or others who know more than i do .............PLEASE CORRECT THIS INFO IF YOU FIND ERRORS.

THIS WAS A SAMPLE DIET SOME 'MOM' I THINK PUT UP..MEANING IT WAS FOR CHIDRENS AMOUNTS I BELIEVE.
MAYBE SOME INFO ISN'T GOOD FOR US CELIACS...WE'LL HAVE TO CK THAT PART OUT.

SAMPLE MENUS

Each day is between 2200 and 2500 calories, 170-250 carbs and 26 - 40 oxalates. I believe the carbs should be higher but I am still working on it. All servings are ½ C. and I use coconut flour from Digestive Wellness for baking. drinks water throughout the day.

Day 1

Breakfast
2 fried eggs
3 pieces Applegate Farms bacon
2 oz. just cherry juice with water
Lunch
4 oz. chicken
Avocado – 1 whole one
8 oz lemonade
Dinner
4 oz. hamburger with ½ oz. goat cheese
Squash fries sauted in olive oil
6 oz. coconut kefir
Plum
Cultured vegetables
Snacks throughout the day
2 T. shredded coconut/ 6 dried apricots
Red pepper
Pumpkin seeds – 2T
4 pistachios
Dried mango
Raw cauliflower
Banana bread
2T. shredded coconut/6 dried apricots



Breakfast
Waffle
Pork sausage patty made with avocado
2 oz. Just Cherry juice with water
Peach

Lunch
Salmon – 4 oz. (wild from organic food store)
Black eyed peas
Coconut kefir

Dinner
Chicken nuggets made with coconut flour
Organic brown rice
Broccoli – boiled
Cultured vegetables

Other snacks during the day
Avocado
2 organic fruit leathers (apple and grape)
Garden peas
Cauliflower – raw
Cucumber – peeled

Breakfast
Banana bread
Pork chop – 4 oz.
2 oz. Just cranberry juice with water

Lunch
3 Applegate Farms Turkey hotdogs (they do have celery juice in them)
Romaine lettuce
2Tcoconut/6 dried apricots
Radishes
Lemonade

Dinner
Hamburger
Peach
Red pepper
Coconut cookies
Water

Avocado
2T. coconut/6dried apricots
Garden peas
Dried cherries
Raw cauliflower
Kohlrabi
2 fruit leather – strawberry/apple
Dried peas
Dried mango

JUDY IN PHILLY

HI RACHEL,
I SEE WE WERE POSTING AT THE SAME TIME.

WOULD YOU SAY...HERXING...AND DUMPING...ARE KIND OF THE SAME CONCEPT.........OR ARE THEY TOTALLY DIFFERENT?

SO GLAD YOU SEE YOU CHECKING IN.
JUDY

QUOTE

WOULD YOU SAY...HERXING...AND DUMPING...ARE KIND OF THE SAME CONCEPT.........OR ARE THEY TOTALLY DIFFERENT?

Judy...I havent looked up "dumping" but from what I've read here I would say they are the same thing.

To me herxing = too many toxins overwhelming the elimination organs. They cant get out so they circulate and cause symptoms.

With regards to killing bugs....we end up spilling heavy metals into the system because the bugs bind with metals....especially yeast. That can cause alot of stress on the body.

In Robbins post she mentioned that oxalates bind with heavy metals. I have never looked that up but if thats the case....I would assume some metals get dumped into the system as oxalates are leaving??

Not really sure but I did read (from the link I posted) that oxalates are very similar to sulfur and sulfur definately does bind with heavy metals. Alot of the autistic kids have problems with the sulfation pathway...they have difficulties metabolizing sulfur. These same kids usually do better avoiding oxalates as well.

Oxalates seem to be involved with the sulfur system...so if that is not functioning properly I could see how oxalates would become problematic.

Sulfur metabolism is essential for removing heavy metals and it can be shut down by mercury (or genetic factors).

I have problems with sulfur metabolism as well...all the foods high in sulfur and oxalates are not in my diet. I have no problems with russet potatoes....so nightshades dont affect me.

QUOTE

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

If this is true then its likely oxalates can accumulate in the body (holding onto metals) much in the same way that sulfur does....when there are problems with that particular pathway.

To me it seems linked to heavy metals and the function of the sulfation pathway.

My Dr.'s say these problems with my sulfation pathway will resolve as I become less toxic from the metals. They say the food problems will resolve as I progress

I will have to see how it goes. I only just started my chelation treatment. I will report my progress (and hopefully I have some to report).

And while I'm asking questions, may I ask some more? :-)

Robbin, where again is your journal that's mentioned here a couple of times?

And then this next question I know opens a whole can of worms, but I can't help myself...

I developed anxiety and depression symptoms at the same time that the GI and joint symptoms started -- about 2.5 years ago. I did a year of various SSRIs but ended up hating them -- I think mostly because I am likely a slow metabolizer and they tended to be toxic for me, though they all helped some.

Side note: I've been curious to understand how this slow metabolizer thing (like 8% of the population?) might correllate to our kinds of auto-immune reactions to various stressors (viral, life, etc).

So....I came off all the SSRIs -- coming off effexor was one of the most heinous stretches of my whole life, and then a brief stint with wellbutrin almost killed me, no kidding. Anyway, for the last six months my mental health has been terrific, though my guts not any better.

And THEN, I saw another GI doc a few weeks ago who talked me into eating gluten and dairy and everything for a couple months so he could do a colonoscopy. THREE days after I started eating wheat again, I had a major depressive episode, first one in half a year (and those were actually CAUSED by too much SSRI). And two more horrible episodes followed in the last couple of weeks.

I decided in the last couple of days I couldn't handle the "gluten challenge" and the depression sent me in desperation back to my old bottle of lexapro from two years ago, only 5mg dose. It has helped immediately, but I'm pretty clear I wouldn't have had to go there if it weren't for starting back on eating gluten.

Anyway, I'm curious to know if others have had similar experiences with the anxiety/depression stuff.

Now that I "wimped out" on the gluten challenge and have started this low oxalate diet, I'm thinking I should just cancel the colonoscopy/endoscopy and see how this new diet goes. I'm so skeptical about how useful the mainstream GI stuff is.

I can report, completely unscientifically, that the last two days of low oxalate eating I have had NO gas and NO intestinal discomfort. Those stretches have been very few and far between in the last few years.

Why does your Dr. want you to eat gluten and dairy before doing a colonoscopy??



Yes. BIG-TIME depression for me. I was depressed for more than 2 years....it got to the point where I was not wanting to live. I cried most days...and my brain was pretty messed up...couldnt concentatre or focus on anything...including driving.

The Dr.'s tried to push the antidepressants on me but I instinctively knew that something else was going on....I've never been one to take meds anyways....not even aspirin.

After a couple years I finally gave in and took Prozac for two months (they convinced me to at least try it)...it did nothing for me. They wanted to add Wellbutrin and I said "No way...I tried it..it didnt work."

I ended up sicker as time passed and eventually did a major overhaul on my diet and eliminated alot of "everyday" toxins I was exposing myself to. I havent had problems with depression in over 2 years now.

Occassionaly I have a bad day if I get overwhelmed with chemicals or if I eat something that I shouldnt. Its pretty rare for me to shed any tears now.

Rachel, that's such wonderful news about your not being depressed in the last couple of years.

I guess I'm glad the SSRIs are there but they are a very blunt instrument and certainly don't deal with underlying causes very well.

The GI doc wanted me to eat gluten because I haven't had a definitive celiac diagnosis. I'd been gluten and dairy free for a year when I did the blood test and so tested negative. I had dramatic improvement on the gluten-free diet, but then the symptoms returned after a couple of months, then went soy free and symptoms improved again. Then a month or so later the symptoms returned...so I went to a new GI doc to see what they had to suggest next. The persistence of joint pain seems to make them think celiac more likely, but who the heck knows, right?

I don't actually understand entirely what the colonoscopy/endoscopy can determine. Is it just clinical observation of damage/inflammation that's considered "the gold standard" in celiac diagnosis or is there some definitive lab/pathology work that comes of the procedures that would distinguish celiac damage from say Crohns or ulcerative colitis? I know I should know this by now but I don't....

The colonoscopy cant determine anything with regards to Celiac....thats why I asked why he wanted you to eat gluten. The endoscopy is used to diagnose Celiac....so as long as he's gonna do that and not just a colonoscopy its fine....otherwise you'd be eating gluten for nothing!

This page explains what they're looking for when diagnosing Celiac with the biopsy.

http://www.celiacdiseasecenter.columbia.ed.../C04-Biopsy.htm

The colonoscopy can look for other issues but thats totally seperate from diagnosing Celiac.

Thanks for asking Patti, my hysterectomy was 6 weeks ago this last Wednesday and I am doing ok. I really do notice those missing hormones though. I was already in menopause, so at least sugical menopause wasn't so rough for me--the tears are the worst.

I can't remember who mentioned some of us having hysterectomies and tumors--mine was for a prolapsed uterus and polyps, which came back benign. So, I'm not sure if that fits your line of thinking.

Like many of you, I've been on the elimination diet that never ends since being diagnosed as celiac this past January. I have been nightshade-free for 11 years (for arthritis & other issues), and am now gluten-free, dairy-free, soy-free, meat-free (eat only fish), low starch, grain-free, and sugar-free. I eat only fish, and limited fruits and vegetables. I went low oxalate because I had developed severe pain surrounding my arthritic joints, and (sorry for being so graphic) stinky urine. Within a day of going low oxalate, the severe pain went away (yay!) but after about a week my joints became severely inflamed, and I'm having chills followed by sweats at night. Severe pain from inflammation (different from the original pain) in one knee wakes me up at night, and it's so swollen it feels like it's going to explode!

I'm not sure if this is considered dumping, but I sure hope so. It's been a few days, and I'm still waiting for some relief.

Let's hope that IS dumping, Aschev! It sounds awful! Keep us posted.

I read through a lot of the case studies in the yahoo group last night and they described the dumping symptoms mostly as more frequent urination and behavioral regression in their autistic kids.

My cousin has an autistic son and she has a hard time figuring out whether there's anything going on GI-wise with him. Anyway, a lot of the specific experiences from the yahoo group are hard to translate over here to those of us with GI issues. Though one woman asked if anyone else's kids had been limping as part of the "dumping" process -- which makes it seem possible it's causing autistic kids joint pain too. Or it could just be coincidence. The communication issues with the ASD kids obviously makes it hard to decipher.

I will say now on my third day of low-oxalate diet that my diarrhea is much worse and that my joints are hurting a bit more, though I am not as bloated and gassy.

I'm worried I'm adding to problems because I've doubled my intake of calcium -- and the supplement I had on hand comes along with magnesium, Vit. D, some plant-based digestive enzymes and a few herbs. It's possible those enzymes and herbs are high oxalate...

What's this thing about calcium citrate being the ideal form? What do you all take and how much? Brand?

I will mention in case it applies to anyone here that melatonin has been shown to aggravate rheumatoid arthritis inflammation. I had been taking it every night for sleep and when I stumbled on the studies about melatonin and RA, I stopped taking it. Within a week or two my joint pain decreased by at least half. It was really quite striking. Though now I'm taking ativan or klonopin (very low dose, but still) to sleep.

Rachel! I meant to say THANK YOU for the link to the site about endoscopy and celiac and for clarifying this for me.

I'm going to have to decide in the next week I guess whether to go back to eating gluten before my Oct 10 endoscopy/colonoscopy or to cancel it and see how it goes with the low oxalate diet.

Dear Gluless,

It sounds like you have had the most dramatic experience on the low oxalate diet of anyone we've heard from so far.

Can I bother you to summarize your experience for us here? Just a quick overview, like how long you've been on it now, how long it took to notice improvement, and how you're feeling now?

Thank you for sharing your experience! It sounds amazing! And like it's been a very long hard road as well!

I think pretty much all of the autistic kids have GI problems. All of my current Dr.'s are treating the autistic kids and they do have GI infections, food intolerance, leaky gut, yeast, etc. I've never heard of an autistic child NOT having GI issues. They might not have noticeable symptoms (in comparison to other things going on) but they do tend to have GI problems. Its a major factor in their treatment.



I havent joined that Yahoo group but I'm wondering if there is any discussion about *why* oxalates are accumulating to toxic levels in these kids??

From what I read it sounds like its because of an inability to metabolize them...a problem with that pathway. The oxalates are binding with heavy metals...possibly in the brain even.

I think the "dumping" is likely a release of heavy metals which is why many of these kids are experiencing an increase in physical symptoms as well as behavioral regression. The same thing happens during chelation if too much is mobilized at once and the elimination organs cant handle the burden.

I dont think the increase in joint pain would be a coincidence at all....I think its directly related.

If the body cant get rid of something very efficiently...it will circulate throughout the body causing symptoms of toxicity. Heavy metals are stored in the organs and tissue and if oxalates can bind with them...they would likely get stored there as well. This would definately cause inflammation beacause the immune system responds to toxins that are in places that they shouldnt be.

If suddenly the amount of oxalates consumed is reduced the body would finally be able to start getting rid of some of it. In that process I would imagine that heavy metals get mobilized.

These things that bind with metals require a fully functioning sulfation pathway to keep things moving. If there is interference with this process we cannot detox properly. Basically we would start accumulating heavy metals and other toxins.

Also, oxalates deplete gluathione. Glutathione is *the* most important thing we need in order to detox efficiently. Glutathione's role is to detoxify....without it we would die.

I currently have to supplement glutathione for my own condtion.



I have problems with all plant based enzymes and herbs as well...this has been the case for a long time now. I had to completely avoid these things the last few years....otherwise I would deteriorate fairly quickly....it took me awhile to catch on. Now I'm at the point where a few of my supplements contain some herbs and I'm doing ok. My Dr.'s muscle test me first and most herbals I still cannot tolerate...but some I'm ok with in small doses.

Has anyone ever seen any "crystals" from the oxalates?? I actually get some type of crystals that form under my fingernails (never knew what they were but thought it was sulfur related somehow). I wonder if it could be oxalates??

The only other place I see crystals (well it actually looks like salt to me) is on my face. I can actually scrape it off my skin sometimes. As most of you know my most toxic area is my head....lots of mercury and "bugs" hanging out in my jaw...fungus in my sinuses, etc. Over 95% of my symptoms and inflammation is in this area. My lymphatic system is pretty clogged up from all the toxins here.

I'm wondering if oxalates are also accumulating...binding with all these toxins.
I wonder if that could be why those salts come off of my skin from time to time.

How weird would that be??!!

Well....I guess no weirder than anything else thats happened to me.

Someone else on here described the same white stuff coming out of their skin as part of the low oxalate diet, so maybe so!

Also, on this sulpher stuff -- which I don't understand -- a woman on the low oxalate yahoo site who has been low oxalate for many years said she had to sort out her sulphur issues -- I've posted back to ask what that means she did specifically.

She also refered us to another yahoo group led by this same woman/researcher who is running the low oxalate group -- it's called sulphurstories. I just requested access to it. But the home page of it lists a whole mess of sulphur-related supplements that she says some people have done well with and others have had huge problems with. They include MSM, SAM-e, and a bunch of amino acids. I don't remember what else. But I know I've tried about half a dozen of those on the list at various times and I think every one of them has given me diarrhea. So I'm curious to know what this sulphur stuff is about.

Are you all doing fish oil in any amount? Problems or benefits? I've been taking it a long time and don't know if it's helping or hurting.

The role of O.formigenes:

Check out the last sentence especially. We have to read all this kidney stone stuff through the lens of "enteric hyperoxaluria" (too much oxalate in the gut) which IS heavily correllated with celiac and other gut diseases.

This is an abstract from a 2002 article:
"Oxalobacter formigenes and Its Potential Role in Human Health"

Oxalate degradation by the anaerobic bacterium Oxalobacter formigenes is important for human health, helping to prevent hyperoxaluria and disorders such as the development of kidney stones. Oxalate-degrading activity cannot be detected in the gut flora of some individuals, possibly because Oxalobacter is susceptible to commonly used antimicrobials. Here, clarithromycin, doxycycline, and some other antibiotics inhibited oxalate degradation by two human strains of O. formigenes. These strains varied in their response to gut environmental factors, including exposure to gastric acidity and bile salts. O. formigenes strains established oxalate breakdown in fermentors which were preinoculated with fecal bacteria from individuals lacking oxalate-degrading activity. Reducing the concentration of oxalate in the medium reduced the numbers of O. formigenes bacteria. Oxalate degradation was established and maintained at dilution rates comparable to colonic transit times in healthy individuals. A single oral ingestion of O. formigenes by adult volunteers was, for the first time, shown to result in (i) reduced urinary oxalate excretion following administration of an oxalate load, (ii) the recovery of oxalate-degrading activity in feces, and (iii) prolonged retention of colonization.

SO, the issue is that antibiotics or other intestinal damage can eliminate the healthy presence of O.formigenes and that O.F. is KEY for the body being able to handle oxalates AND a SINGLE dose of OF can solve the problem!

I think you all have alluded to this before, but it seems like might be crucial to find a source for O.F. I've taken heavy-duty probiotics for a couple of years and I don't think they help me AT ALL. And I think they cause gas. But maybe part of the problem is that it's missing the key ingredient?

Okay, sorry to be OBSESSIVE here!

Wow! I'm betting thats what it is. Its very obvious under my nails....if it accumulates they can get pretty solid like a piece of crystal! On my face its small...like little pieces of salt.

It really makes alot of sense to me.



Sulfur metabolism is a part of the methionine pathway....a major detox pathway that is not functioning well in alot of the kids with autism. I've had similar problems since I got sick and became very toxic.

Sulfur foods (garlic, onions, eggs, etc.) bind with mercury....with glutathione and other processes they can help remove heavy metals from the body. Our bodies can manufacture glutathione from sulfur intake. Sulfur is a very important part of the detoxification process.

If a person is toxic from heavy metals these foods dont have the capability to pull out the metals from the tissue and carry it all the way out of the body. They end up mostly moving it around...which is worse then leaving it stored where its at.

If something is wrong with the pathway these foods end up causing problems. I have alot of problems with sulfur foods. I can eat eggs if I remove the yolks...the yolks are the part which is high in sulfur.





Some of these sulfur containing supplements are used to chelate heavy metals. None of them are effective by themselves because they dont have the capability to do the job on their own...they might have the ability to pick up mercury but a chelator has to be able to hold onto the metals until they can be excreted. Some of them (like NAC) can pick up mercury from one area and then drag it into the brain...which is not good!

In conjunction with other supplements and if done in the right way...the metals can be chelated safely.

Amino acids help the body to detoxify....three of the amino acids can be manufactured into glutathione. Cysteine (NAC) is one of them...its a sulfur compound...called a "thiol".

To effectively chelate metals 2 "thiols" are required. Sulfur foods and supplements only contain one "thiol"....which can cause them to move mercury from one place to the next instead of clearing it out of the body. This can cause symptoms to worsen.

Also...the immune system will be reactive to mercury that is on the move...so when sulfur is "bound" to it...the immune system can also begin to target the sulfur. This is a common reason for becoming reactive to sulfur foods or supplements.

The only chelators that contain 2 thiols are the ones which are man-made and used specifically to detox heavy metals. I take one of these oral chelators in conjunction with NAC and ALA....the oral chelator as well as glutathione and other supplements help to prevent the NAC and ALA from acting unpedictably...and dragging heavy metals around.

Its all very complicated and there are a few different reasons why someone might not do well on sulfur supplements. Many things can go wrong with the pathway....too much sulfur may already be accumulating in the body and its reached toxic levels...or sulfur bound to mercury and on the move can cause a reaction to occur.

If a person is mercury toxic and the sulfur they take in is binding with that mercury...it disrupts the cycle. That sulfur is needed elsewhere and its not being utilized.



I dont know what exactly is going on with the oxalates but it sounds very similar to the problems that develop with sulfur....and the oxalates use the same pathway....the sulfation pathway.

I think oxalates can bind with metals and reach toxic levels the same way that sulfur can. If there is a problem with metabolizing the oxalates because the pathway is blocked....then they would circulate and then store themselves in tissue.

Most of the treatments used for autism have also worked for me. My treatment isnt much different from what my Dr.'s are doing with the autistic kids.



I tried fish oils early on...about 4 years ago. I know that it was not helping....it made me worse.

Now I do not take "fish" anything because I'm mercury toxic. I know that there are brands out there which are supposedly tested and declared mercury-free...but I have not tried any. I'm being treated so I basically stick to the protocol that my Dr.'s have me on.

Is the woman running the low-oxalate site named Susan??

How do you join?? I tried last night....nothing happened...picked my name "RachelMarie247"....but I couldnt get on.

If its Susan...this is what shes saying about ALA (widely used in chelating mercury).



DMSA and DMPS are two of the man-made chelators. They very effectively remove metals from the body. I take DMSA.

I also take ALA in cunjunction...but not on its own.

She is saying ALA reduces oxalates...but ALA is chelating metals....thats what it does. If oxalates are bound to those metals...then it would also reduce the oxalate load.

If oxalates are binding with metals in the body...it would make sense that as the metals leave...so do the oxalates. The oxalates are most likely there because of the metals.

If ALA is helping people get rid of oxalates...I have no doubts that DMSA and DMPS would have that same effect....and without as much risk of redistribution (which causes an increase in symptoms).

This would also explain why people no longer have these food intolerances once the metals are detoxed.

My hysterectomy was due to fibroids (the latgest being 8cm.), endometriosis (which may have an autoimmune connection) and adenomyosis (where the endo infiltrates the uterus). Basically lots of abnormal tissue--interesting.

The connection to leaky gut makes sense. Here is an article that I thought was pretty informative--

http://wholisticpeds.com/uploads/THE%20LOW...LATE%20DIET.pdf


I intend to join up as soon as I get the chance.


I hope so too! Rachel, I'm thrilled you have joined in the conversation. I was hoping to get your take on the scientificness of all this.


Yes, I also developed depression and to a greater extent, anxiety as my Celiac symptoms became severe. I have some joint pain--that at first became much more widespread when I first tried low oxalate and upped the calcium. It also caused muscle aches.


Deb--

I'm glad to hear you're doing ok--I was also in menopause at the time of my surgery, so I know exactly what you are saying. I'm not on any HRT by choice, but I couldn't be anyway since I had a stage 4 endometriosis that had spread beyond the organs removed.

The tears will get better! I had a lot of that, but now at about 10 months out, I'm doing much better. Not as many hot flashes, sleeping better at night, etc. You will get there, it's gradual and takes time, but it really does get better

This is not a bad thing!
Especially since my own obsessiveness wont stick out so much!

Ok, part 2

I was afraid the board would kick back my post if it got much longer...

Thanks, Judy, for the sample meal plans.

I also wanted to say I'm sorry for being MIA since right after I started this thread. We are smack dab in the middle of selling our house and having to find a new one to be into by the end of October I'm exhausted--both physically and mentally, although it is really going well so far.

I have to say that a year ago--actually 6 months ago--I could not have ever ridden for 3 hours in the back seat of a realtor's car like I did yesterday. I would have freaked out at the thought of riding through the countryside away from any bathrooms and the possibility of having to ask the person driving to stop for me.

It dawned on me yesterday that I was doing something "normal"--I was anxious about it, but went ahead because of how much better I've been lately since beginning this regimen. Last year, I would have had to stay home while my husband went and took pictures for me to look at--instead, I was out there looking for myself!

I know to some that might not sound like much, but it's huge for me. There is definately something to this--I think I'm still at the stage where I'm reacting to the oxalates making their way out, as I do have more aches in my neck, upper arms and thighs. I think it's a good sign, though

I'm also facinated by the oxalate/leaky gut/autism connection.

Thanks for everyone's input--this is very exciting

Girlfriend, I'm right there with you on the obsessiveness

It DOES sound huge!!
Patti...I'm really excited for you! I have a feeling things are gonna keep improving for you. The new house, getting your health back...its all gonna come together.

YAY!!



Me too! Not that I really needed anything else to put my brain into overdrive.

Rachel, yes Susan someone runs that yahoo site AND the "sulphurstories" one. She seems to be a researcher at some institute. I don't know the whole story.

To join you have to click "join this group" in the upper right corner of the window and fill out a form and write a few words about WHY you want to join and then wait for her to admit you....which only took a few hours for me, but I don't know how regularly she is on there (I assume it's susan who is the administrator).

The site's a bit cumbersome because you also have to wait for her permission any time you want to start a new thread (not respond to someone else's though). But I guess I appreciate that they are trying to do one thing systematically and so limiting extraneous stuff is important for them. And she clearly has gathered and is gathering a lot of useful research.

I posted a question there about the probiotic O. Formigenes or whatever it's called. Robbin referenced it here a few pages back in her most excellent overview.

I think we ought to find a source for this stuff and try it out. If it's being prescribed for kidney stone folks, then doctors should have access to it. I'm going to call my GI doc this week and ask about it.

More soon NO DOUBT!

catesfolly--

Do you mean Susan Owens? I've been reading some interesting stuff by her--some of it in the link I posted.

Here's more info, I hope this works...

www.drneubrander.com/Files/BioChat%2020051004%20-%20Susan%20Owens.doc -

Thanks for explaining!

I did fill out a form and tried to submit it but it wasnt bringing me to a new page. I never saw anything where I had to explain why I wanted to join. Must have missed that....or it was on the next page which wasnt coming up for me??

Oh well. I was just wanting to read what the posters were saying. I could try again another day...see what happens.

Yeah...thats her. She's the one I was quoting from.

She wont let me in the group!!
Didnt know there was a screening process.