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jerseyangel

Oxalates And Nightshades

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let's hear it for our PATTI.............

CONGRATULATIONS ON YOUR 3 HR CAR RIDE :lol:

ONLY US 'BATHROOM MAPPERS............WOULD APPRECIATE WHAT A BIG STEP THAT IS

RACHEL..IT TOOK ME SEVERAL ATTEMPTS TO GET SIGNED IN.

IT'S KINDA A ONE DAY TURNAROUND ...AS I SEE IT...AS TO WHEN OUR POSTS SHOW.

I'M SURE YOUR 'HA HUM' WELCOME............. :blink: ESP YOUR SCIENCTIFICNESS :lol:

ISN'T IT FUNNY HOW ONE LITTLE LIST SERV THREAD FROM VALARIE WELLS CREATED ALL THIS.

I STILL WRITE HER ON OCCASION.

ROBBIN WOULD YOU BE COMFORTABLE POSTING YOUR AUG 17TH THREAD HERE?

I HAVE IT IN YOUR FILE AND KEEP RE READING.

LOVE J

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She wont let me in the group!! :lol:

Didnt know there was a screening process. :P

You have got to be kidding! I didn't know about the screening process, either. I never got past picking out a username :lol:

I'm gonna give it a try today :unsure:

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'BATHROOM MAPPERS

:lol: Yup, I am a bathroom mapper--have been for a very long time. I will not frequent stores that do not have public bathrooms. If there is no bathroom, then FOR SURE I will need one, it's a golden rule for me! I just never gave myself a name before. Gotta love it!!!!!

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:lol: Yup, I am a bathroom mapper--have been for a very long time. I will not frequent stores that do not have public bathrooms. If there is no bathroom, then FOR SURE I will need one, it's a golden rule for me! I just never gave myself a name before. Gotta love it!!!!!

That is too funny! I think I actually over did it this weekend. I took 2 Immodium "just in case" Saturday morning and still haven't gone. This is all new to me :lol: Such freedom B)

I'm still waiting for the other shoe to drop, though ;)

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WOW ------LOOK OUT WORLD...

PATTI CONSTIPATED :lol: ???????????????? :lol:

WILL IT MAKE THE TV NEWS??????????????

YA JUST PLAIN HAVE TO LAUGH :lol: B/C THIS IS SO NEW TO US....OMG..........WHAT A WEIRD LIFE WE LIVE..........AND THUS ............THE WEIRD SENSE OF HUMORS.

LOVE YA ALL

RACLEL......DID YOU GET APPROVED YET :lol:

HAPPY MONDAY EVERYONE...AND THANKS PATTI........YOU KNOW WHY

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WILL IT MAKE THE TV NEWS??????????????

:lol: Film at 11 :lol:

Actually the situation has resolved itself B)

I haven't heard anything from the yahoo group(I know you were asking Rachel, but I'll pipe up) :D --how long does it take to get approved? This must be some good information over there that we have to be screened to see :P

You're more than welcome, Judy--that's what friends are for ;)

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RACLEL......DID YOU GET APPROVED YET :lol:

I havent had a chance to go back and try. I never saw where you're supposed to request to join. :unsure:

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I just checked my emails, and I was approved! :D

Rachel, after the page where you choose a username, you proceed to another page where you register and at the bottom of the page, they ask you why you want to join, etc.

It takes about a day to get "approved".

I haven't been over there yet--

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PATTI SAID...........

:lol: Film at 11 :lol: Actually the situation has resolved itself

WELL HOT DAMN......THERE IS JUSTICE IN THE WORLD...ROCK ON PATTI

I havent had a chance to go back and try. I never saw where you're supposed to request to join. :unsure:

NOW WE JUST NEED OUR RACHELVILL PRES...APPROVED.... :lol:

JUDY

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Oh, man you guys, after all this buildup about the yahoo site, it's going to be a huge disappointment!

One kind of nice feature, though, if you select it, is to be sent the daily summaries of postings. Otherwise I think they email you every time there's a new posting. The daily summaries come as an email every day and just show the new postings. It's MUCH lower volume than celiac.com. And not as well organized.

Okay, just as long as we're sharing bathroom stories...I can say unequivocally that going low oxalate has turned my poops really pale. But of course everything I'm taking in is white food, so I guess that makes sense.

My diarrhea is a lot worse but I have no idea if it's because of taking more calcium, because of the dumb lexapro I started myself on again, or because I'm "dumping" oxalates. Or because the only sweet food I've found to eat on this new diet are these macaroons that have nothing but coconut, cane syrup, and egg whites.

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Oh, man you guys, after all this buildup about the yahoo site, it's going to be a huge disappointment!

I have to agree that I was disappointed that it wasn't more of a dialogue-type board like this one. I'm hoping though to be able to go there and ask a question or just get more info.

Just a thought about the D--are you sure you're ok with coconut? I'm very intolerant to it and it affects me in that way plus nausea. I can't even tolerate water that has been filtered through a coconut-shell filter (which is the most common type and in most filters)

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Wow, maybe it is the coconut. Who knows! I'll try and make it through a few days without the macaroons...but it's hard to imagine.

What do you do for sweet cravings?

I did get an answer back from one person on the yahoo site about the availability of O. formigenes -- and he said when he looked into it a while back that the one company that planned to sell it (to doctors) was still in development on it. But he didn't remember names or have any leads. So I will keep looking. I know there are no miracle substances out there, but the research on this one sure sounded intriguing.

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florence did you see this on the site?

I'm not sure if we are allowed to do a cut and paste anyone know?

did you post a question on the other thread on here re the o formigenes?

from the yahoo group today

____________________

Alobar,

I've gotten to know one of the key scientists on this project to develop a

probiotic of oxalobacter formigenes. This project was extremely expensive

because this bacteria is an anaerobe, and it is difficult to package it

where it won't die in the bottle! Dr. Harmeet Sidhu'a name you will

recognize on the studies that are out there, as she is the key scientist on

the project to develop this probiotic, and she is QUITE aware of how badly

we want their product. The problem is that it is now in clinical trials

which take a long time to complete, and the FDA will not allow them to

investigate other uses until they have complete approval for the one

indication which they ARE testing, and that is hyperoxaluria related to

kidney disease. Of course, right now, the only people using the drug are

the ones in the trial. So, we have to wait I'm sure she will let me know

the second they know when approval will come, for then we will need to

arrange our own study to see how it affects those with autism, and in the

meantime we have a BIG JOB for us, and that is to show how many other

conditions may be helped by this product by noting what things improve when

we reduce oxalates!

Just FYI, off-label use (for other conditions) is something that is legal

for a prescription drug (which this will be) but you have to find a doctor

who will prescribe it.

Susan

__________________________________

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Oh, man you guys, after all this buildup about the yahoo site, it's going to be a huge disappointment!

One kind of nice feature, though, if you select it, is to be sent the daily summaries of postings. Otherwise I think they email you every time there's a new posting. The daily summaries come as an email every day and just show the new postings. It's MUCH lower volume than celiac.com. And not as well organized.

Okay, just as long as we're sharing bathroom stories...I can say unequivocally that going low oxalate has turned my poops really pale. But of course everything I'm taking in is white food, so I guess that makes sense.

My diarrhea is a lot worse but I have no idea if it's because of taking more calcium, because of the dumb lexapro I started myself on again, or because I'm "dumping" oxalates. Or because the only sweet food I've found to eat on this new diet are these macaroons that have nothing but coconut, cane syrup, and egg whites.

Hi Everyone! I have to agree on the problems with the yahoo site--the most I do on that site is sort through the information and find out what I can about the whole process and hope to learn more about the availability of the o.formigenes-(Looks like it will be a long wait on that one...:(

RACHEL!! SO HAPPY TO "SEE" YOU!!

Catesfolly--I don't remember where I read this, or if this is accurate, BUT--check out Lexapro--I THINK it may be a high oxalate drug. Not sure about that.

One new bit of information I found is that a biotin deficiency will worsen an oxalate problem. The whole explanation about this is a complicated one, but a biotin deficiency will apparently make a person much more sensitive to oxalates. Omg, yet another thing to consider.

I did notice that I cannot tolerate any kind of tablet type vitamin. I tried caltrate tabs with vitamin D over the weekend, and got hit with D and joint pain--I felt almost myself today after getting some more of the calcium citrate with magnesium capsules, so I really think for me, the tablets are not digested well. In case this helps someone else, I am putting that out there.

I will list some of the improvements I have happen since starting this in June: (Bear in mind that I have had Fibromyalgia along with celiac for years-- Eyes wetter, D improved, joint pain improved, trigger points from Fibromyalgia improved, horrible rib pain gone, fibrocystic breast disease completely gone-the pain had gotten better from that going gluten free, but was still off and on sore and still had lumps. Heel pain that felt sharp and very painful especially in the mornings gone, hard tissue in lumps on legs gone. I had little white bumps under the skin on my face for years that are now gone. Fingernails stronger, sense of touch more sensitive--(I had very little sensation in my fingertips for a long time.) Sharp needle-like shooting pains have gone so far. Hopefully for good.

I have noticed that white powdery/grainy stuff on my skin too! The inside of my mouth actually peels some days too.

I have yet to have a good strong indication that my eyes are improving, but I am hopeful. I still have a lot of fatigue and back pain, but I really am improving in a lot of ways. The most important thing is that horrible brain fog is lifted.

I eat extremely low oxalates, mostly meats, rice, eggs, very low oxalate fruits and veggies. My "treat" is one cup of coffee in the morning. I also eat two bananas a day (yuck I hate them, lol) for the potassium and other vitamins.

I am going to look into the biotin connection more closely and if anyone knows about this, let me know. I will be the guinea pig, if not, lol.

(my journal with updates on what I am doing is August 17 in DailyStrength, btw)

Love you guys!! Robbin

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THANKS ROBBIN..............SO MANY GOOD DETAILS.

SO HAPPY THE MORNING SHUFFLE IS GONE TO...........THAT'S WHAT I NOTICE TOO.

NO PAIN BUT CAN WALK WITHOUT USING THE COMPUTER CHAIR WITH ROLLS AS A 'ROLLING WALKER TO BATHROOM

I'M SO THRILLED FOR YOU AND ESP.

YOUR COMMENT TO ME............A YEAR AGO THERE WOULD BE NO WAY IN HECK YOU'D BE TACKELING THIS PAINTING /REMODELING PROJECT...........THAT IS SO BIG.............KINDA LIKE PATTI'S RIDE IN THE CAR ALL DAY.

WE ARE GOING TO MAKE IT.

I KNOW WE ARE...............AND WHEN WE DO....................A GROUP MEETING............SOMEWHERE.........TO CELEBRATE OUR WELLNESS.

NITE LOVE

JUDY

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Hi Robbin. :wub: :wub: :wub: It is so good to find you here and I am over the moon to hear that you are feeling better.

I am thinking this may be an essential piece of the puzzle for me too, I went out last night and purchased magnesium and today I will start this diet. I am on the C side of the spectrum and am thinking not to increase my calcium at this point. Any opionions on this?

Patti, thank you so much for starting this thread, I'm so glad to be back for it. :wub:

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Judy, so funny, I was just about to paste that reply from Susan over here when I saw you beat me to it.

I'm glad, at least, that someone's working on it. But frustrating! I posted a follow-up question just to get the names of the folks working on it -- I'd like to talk to them! And to find out what probiotic they recommend on the low oxalate diet. I think there was specific one, but I don't remember.

I think Rachel said this before, that she can't tolerate the probiotics and I think that's the case for me too. But there's so much going on at once, I have a hard time being sure.

I hate bananas too, but eat them! Have you tried slicing them longways and sauteeing them in a little butter until they're brown? I don't know if that kills the potassium? But doing that with eggs on the side seems to make it better.

Are you all eating any grains besides white rice?

And sorry to ask again, but sweets? Of any kind? Cookies? Brands?

And here's one more...after being entirely dairy free for a long time, I started to add in goat and sheep cheese and goat yoghurt. It didn't seem to make anything worse. Do you all eat any of that stuff? If you're lactose intolerant, does going goat help? And is casein only in cow dairy, do you know?

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I am on the C side of the spectrum and am thinking not to increase my calcium at this point. Any opionions on this?

Patti, thank you so much for starting this thread, I'm so glad to be back for it. :wub:

Rinne,

I'm really glad you are back and I hope that this will be of great help to you :D

Regarding the C and whether to take the calcium....The calcium helps bind with the oxalates to get rid of them. Maybe the addition of the magnesium will put you in a better balance.

Of course, you could try the diet and see how that does by itself--without raising your calcium. I truly believe that no one diet/plan fits all and we need to tailor anything we do to fit our own individual needs.

Personally, I find that I'm getting good results by lowering my intake of high oxalate foods (not omiting them completely) and sticking religiously to taking my calcium. That's what works for me.

I'm sure that the balance is going to be somewhat different for everyone. What does make sense is the reasoning behind this.

I can't wait to hear how this works out for you :)

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Judy, so funny, I was just about to paste that reply from Susan over here when I saw you beat me to it.

I'm glad, at least, that someone's working on it. But frustrating! I posted a follow-up question just to get the names of the folks working on it -- I'd like to talk to them! And to find out what probiotic they recommend on the low oxalate diet. I think there was specific one, but I don't remember.

I think Rachel said this before, that she can't tolerate the probiotics and I think that's the case for me too. But there's so much going on at once, I have a hard time being sure.

I hate bananas too, but eat them! Have you tried slicing them longways and sauteeing them in a little butter until they're brown? I don't know if that kills the potassium? But doing that with eggs on the side seems to make it better.

Are you all eating any grains besides white rice?

And sorry to ask again, but sweets? Of any kind? Cookies? Brands?

And here's one more...after being entirely dairy free for a long time, I started to add in goat and sheep cheese and goat yoghurt. It didn't seem to make anything worse. Do you all eat any of that stuff? If you're lactose intolerant, does going goat help? And is casein only in cow dairy, do you know?

There is casein in goat and sheep milks, too. I have seen some people who can't tolerate cow's milk do fine with one or the other of these. It's individual.

I'm completely dairy free and have been since before I was gluten-free, so I don't have any experience with adding it back in.

As far as grains, I stick to white rice. In addition to the oxalate issue, I was intolerant to grains after I first went gluten-free and stayed off all of them for 6-7 months. I seem to be fine with the white rice, so I'm hesitant to add any others. However...

Regarding your cookie question :D , I do eat Enjoy Life's Snickerdoodles. The first 2 ingredients are sorghum flour and date paste. I have not found either of those two on a high oxalate list and I don't seem to have a problem with them. I try to limit how many I eat at one time, though.

I'm another who can not tolerate probiotics. I get very sick from them--I've been told that if I can "stick it out" that the symptoms will go away but that's not something I want to do. I get horribly nauseous....

Luckily, I love bananas...I eat at least one a day. I have high blood pressure, also, so I feel I need the extra potassium. I think if you're just heating them through, that shouldn't affect most of the nutrients.

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I've been reading this thread, because although my husband has been gluten free for about six months, his joint pain has not improved. So, I'm trying to get him to reduce his oxylate intake, to see if this helps. He's not really "buying" this idea, but I've talked him into giving up the nuts and berries, which have made up a large part of his diet.

He started this on Sunday, and today he feels really awful. I'm hoping this means that he's starting to dump the oxylates. How long will this bad feeling go on, and when can he expect to start feeling better. I hate seeing him like this, but if it will make him feel better in the end (no pun intended), then I think that it will be worth it.

Thanks for any advice, and for this thread in general!

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HI ALL

WORRIED WIFE...I'M TRYING TO FIND OUT ABOUT THE DUMPING TOO --IF THERE IS A PATTERN ETC.

BUT THE GOOD DAYS AND SHRINKING TUMORS MAKE ME KNOW........SOMETHINGS WORKING.

FLORENCE..I TRIED THE GOAT ETC OTHER CHEESES....IT'S THE CASEIN THAT GETS ME AND IT DIDN'T WORK ...BUT THAT'S ME.

BUTTER YOU KNOW HAS CASEIN SO DOING THE BANANAS THAT WAY MIGHT NOT HELP YOU.

YOUR SUCH A GOOD 'SEARCHER' PLEASE KEEP DIGGING.. SO I GUESS YOUR OFF DAIRY RIGHT

I SURE CAN'T KEEP PEOPLE STRAIGHT.

RENNI..........SO HAPPY YOUR HERE.......WE NEED YOUR EXPERTICE TOO

AND ................SOME OF THOSE RENNI BARS..................I WANT TO DRIVE TO CA AND BUY THEM

I'M SO PROUD OF THE LAST EVENT WHERE YOU SOLD THEM.

CAN YOU SHARE IT HERE...........WHEN YOU HAVE TIME..................AS I JUST DIDN'T HAVE THE ENERGY LAST NITE ON OMG TO CK IT OUT.

I'M SO THRILLED WITH THIS THREAD..THANKS AGAIN PATTI

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I've been reading this thread, because although my husband has been gluten free for about six months, his joint pain has not improved. So, I'm trying to get him to reduce his oxylate intake, to see if this helps. He's not really "buying" this idea, but I've talked him into giving up the nuts and berries, which have made up a large part of his diet.

He started this on Sunday, and today he feels really awful. I'm hoping this means that he's starting to dump the oxylates. How long will this bad feeling go on, and when can he expect to start feeling better. I hate seeing him like this, but if it will make him feel better in the end (no pun intended), then I think that it will be worth it.

Thanks for any advice, and for this thread in general!

Hi,

I sounds like your husband is starting to "dump" the oxalates. This was my experience, too. I felt kind of flu-like. I had aches in my neck and shoulders, and my arms and legs, too. I was more tired than usual and somewhat queasy.

My worst joint pain prior to trying this was in my thumb and hip. Both of those got worse before they started to get better. My thumb joint also got red, swolen and very painful right after beginning the calcium, but is fine now.

I don't know how long it lasts, exactly because it's still relatively soon for me. It's been about a month all told for me so far, and my digestion is better--no more D at all (!), thinking is a little clearer and the joint pain is gone at the moment. It took a while for the general achiness to subside.

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My worst joint pain prior to trying this was in my thumb and hip. Both of those got worse before they started to get better.

Hey! Me too! I was told I'm getting old and it's just arthritis.

Hip still hurts if I spend too much time sitting around, but thumb is much better.

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