So Sick, Went To Doc

[AVR1962]

This blows my mind! I've been sick the last 2 weeks, was treated for a bladder infection, had pain in the kidneys; 26 year history with kidney stones. Go back to doc today he tells me that he believes the rason I have been so sick is that he believes I am passing stones. Get that, makes sense, it always makes me real sick when the stones give me issues.

Then I told him I wanted to talk to him about a couple things that happened recently, my hands and feet have been going numb and falling asleep when I am sleeping, sitting, standing for a length of time. This started when I backed off my B-complex. I also told him I was getting terrible bone pain in my low back, knees, and hips so much so that I was having trouble getting up from a chair. This all started when the doc backed me off vit D. He flips thru my files and when I was taking 4000 mcg daily of B12 my tests levles were normal. I reminded him that was when I was on the complex. He told me that the tingling and numbness that I had in my extremities was due to lack of proper circulation and I didn't to stop taking the complex. He said that if I had anything wrong with my skelital structure it would be all over my body, not just my lower half and told me he did not want me taking any D, calcium or magnesium because all were continuing to make stones. He told me to stop all supplements and get all my nutrients from my diet.

My podiotrist wanted me to talk to my doc about meds for Reynaud's Syndrome as he felt my feet were not the right color or temp. He asked me lots of questions and said this was something that coudl be treated. Doc today said that there was nothing wrong with the color of my feet (they are not normal color), said they were not that cold and said that he did not beleive this was Renaud's and said that meds only work for some people.

The guy kept giving me warnings......when he went to tap my kidney area I kind of prepared myself and apparently he must have been looking at my face and said, "This is not funny, this is serious. Kidney infections are serious." My resonpse was, "I was preparing myself for what was coming, as I have had this done many times and know how much it hurts." Then I let him know I was hospitalized sevral years ago for a serious kidney infection. When I told him about my numb feet and hands he said, "Be careful, this is serious. It is very important to know exactly what is numb and why. Numb fingertips could mean you ahve MS and then we woudl ahve to do an MRI." Gee wizz, why did he think I mentioned it in the first place? I let him know I did have an MRI and my brain waves were good.

As I walked out of the building to my car, feeling dizzy, light headed and sick to my stomach (all of which were mentioned) I was thinking 'here I am sick as dog leaving the doc's office with no help from him, am I looking at this wrong?' So I am frustrated needless to say. He wants me to go to urology because he thinks I have an over-active bladder and he wanted anotehr culture to see if the infectiojn in my bladder has past but that was it. Right now I am feeling just a bit baffled.

[frieze]

you need a new doc.....perhaps check out a narurapath who is an MD???

[ravenwoodglass]

Sorry you are going through so much. Perhaps it may be time to find a new doctor?

[Bubba's Mom]

I'm sorry to hear you're dealing with this.

I agree with the others..maybe time to find a new Dr.? Maybe a set of fresh eyes and ears will get better results for you?

[bartfull]

I will agree with the other posters. You need to find a doctor who LISTENS. This guy sounds like one of those "old fashioned" doctors who thinks he is the expert and the patient should not interfere.

You have been through so much already and I hate to hear that you're so sick. I sure wish I could help, but all I can do is let you know I care. I'll be thinking of you today. ((((Hugs))))

[GFinDC]

This article might be interesting. I wonder if the doc thinks you have too much vitamin D or calcium? The part about hypercalcemia sounds like a possibility?

Open Original Shared Link

Toxic doses...

What exactly constitutes a toxic dose of vitamin D has yet to be determined, though it is possible this amount may vary with the individual.

Published cases of toxicity, for which serum levels and dose are known, all involve intake of ≥ 40000 IU (1000 mcg) per day. Open Original Shared Link Two different cases involved intake of over 2,000,000 IU per day - both men survived. Open Original Shared Link Open Original Shared Link

....

Rule out other possibilities

If results indicate levels lower than 200-250 ng/mL (500-750 nmol/L), you are most likely not toxic. In this case, the reaction you experienced may be a result of:

1. An underlying Open Original Shared Link deficiency. This is the most common reason for symptoms brought on by using vitamin D.
2. Vitamin D hypersensitivity due to pre-existing high blood calcium (hypercalcemia). Often mistaken for vitamin D toxicity, hypercalcemia is a rare condition usually caused by one of the following:
   • primary hyperparathyroidism (most common cause)
   • sarcoidosis
   • granulomatous TB
   • some cancers

[YoloGx]

What you suggest about the vitamin D "gluten-free in DC" is interesting.

I actually was tested some years ago as having too much cod liver oil. Not too much vitamin D. The oils had built up and had become toxic. I think it was the EPA, but it might have been the DHA. Either way, too much is too much if that is going on.

The thing is it sounds like Annette's doc was possibly speculating rather than doing any new tests. And speculating perhaps while remaining rather incoherent. How does that help??

I suggest she get a second opinion.

For myself, years later, I discovered that I tolerate vitamin D-3 a lot better than cod liver oil, and find its actually good for me. It was confusing since at first the cod liver oil really helped me out. At a certain point my doctor discovered I had too much of the oil built up in my system. I was afraid for along time to take any vitamin D after that, and meanwhile my calcium absorption remained poor. The D-3 I take now is clearly helping my fingernails and bones without causing a buildup problem.

I think sometimes tests for calcium in the blood are a little deceiving for many celiacs since our absorption due to damaged villi is so bad. So getting the right sort of calcium and improving the state of our villi seems to also be in order.

Meanwhile sometimes kidney problems can be brought on by too much salicyaltes and/or oxylates or simply by the ravages of celiac or severe gluten intolerance and perhaps an also overstressed liver by a sensitive person. This clearly is what happened to me, whether or not it applies to Annette is yet to be discovered.

I agree with the person here who suggested she see a naturopath/md combo if that is possible. Though I would go further all things considered and go the naturopath/homeopath combo. Naturopaths can order most of the same tests as MD's do I believe, and often order a few perhaps more relevant others. And often they try harder. Whoever he or she might be, that person could then perhaps work in tandem with Annette's current doctor. Who knows, with a little spur to cooperate, if he might not decide to try harder too??

[AVR1962]

This article might be interesting. I wonder if the doc thinks you have too much vitamin D or calcium? The part about hypercalcemia sounds like a possibility?

Open Original Shared Link

Toxic doses...

What exactly constitutes a toxic dose of vitamin D has yet to be determined, though it is possible this amount may vary with the individual.

Published cases of toxicity, for which serum levels and dose are known, all involve intake of ≥ 40000 IU (1000 mcg) per day. Open Original Shared Link Two different cases involved intake of over 2,000,000 IU per day - both men survived. Open Original Shared Link Open Original Shared Link

....

Rule out other possibilities

If results indicate levels lower than 200-250 ng/mL (500-750 nmol/L), you are most likely not toxic. In this case, the reaction you experienced may be a result of:

1. An underlying Open Original Shared Link deficiency. This is the most common reason for symptoms brought on by using vitamin D.
2. Vitamin D hypersensitivity due to pre-existing high blood calcium (hypercalcemia). Often mistaken for vitamin D toxicity, hypercalcemia is a rare condition usually caused by one of the following:
   • primary hyperparathyroidism (most common cause)
   • sarcoidosis
   • granulomatous TB
   • some cancers

I did the paperwork to request a new primary health provider and found out that I can go off-base to a German doc and get part of the expense reimbursed. I think I need a set of new eyes. When my primary doc deplyed and his stand-in stepeed in was when I was dx w/celiac based on all tests and my medical history.

When I was seen initially by my primary doc, my calcium was high. Doc thought it was due to a bad parathyroid gland. I was sent to a University Hospital on the German economy. Doc took one look at me and told me that I did not have hypercalcemia eventhough I had a high calcium test. They ran all kinds of tests on me. This is where they found the lodged kidneys stones which they measured to be 8mm each and said they were probably over 20 years old. He said these are the type you can do nothing for as the body just makes them. Base urologist said the very exact same thing.

However, now my primary is saying that I not only have these 2 stones but films showed 2-3 more small stones. Neither the German doc or the base urologist. My parathyroids are healthy. Calcium went from hyper to near hypo when I went on a gluten-free diet and in one year calcium has not been an issue. Infact, my stand-in doc wanted me taking 1100 mg of calcium a day because of my bone loss in both legs and back.

Thanks for all the replies.

[YoloGx]

I did the paperwork to request a new primary health provider and found out that I can go off-base to a German doc and get part of the expense reimbursed. I think I need a set of new eyes. ......

Thanks for all the replies.

Hooray for you!! That is great news that part of the expense can be reimbursed. And that you are seeking a second hopefully more helpful opinion.

Best of luck Annette.

Bea

PS Meanwhile I made and appointment to see a naturopath/homeopath for next Wednesday. I feel like I am over the hump, but am still struggling. I was CC'd 3 times last week. Aach! I feel like I am way too sensitive and want to figure out if there are some underlying issues I don't know about. Am wondering if its still my liver.

So we struggle a bit concurrently it seems...

[AVR1962]

What you suggest about the vitamin D "gluten-free in DC" is interesting.

I actually was tested some years ago as having too much cod liver oil. Not too much vitamin D. The oils had built up and had become toxic. I think it was the EPA, but it might have been the DHA. Either way, too much is too much if that is going on.

The thing is it sounds like Annette's doc was possibly speculating rather than doing any new tests. And speculating perhaps while remaining rather incoherent. How does that help??

I suggest she get a second opinion.

For myself, years later, I discovered that I tolerate vitamin D-3 a lot better than cod liver oil, and find its actually good for me. It was confusing since at first the cod liver oil really helped me out. At a certain point my doctor discovered I had too much of the oil built up in my system. I was afraid for along time to take any vitamin D after that, and meanwhile my calcium absorption remained poor. The D-3 I take now is clearly helping my fingernails and bones without causing a buildup problem.

I think sometimes tests for calcium in the blood are a little deceiving for many celiacs since our absorption due to damaged villi is so bad. So getting the right sort of calcium and improving the state of our villi seems to also be in order.

Meanwhile sometimes kidney problems can be brought on by too much salicyaltes and/or oxylates or simply by the ravages of celiac or severe gluten intolerance and perhaps an also overstressed liver by a sensitive person. This clearly is what happened to me, whether or not it applies to Annette is yet to be discovered.

I agree with the person here who suggested she see a naturopath/md combo if that is possible. Though I would go further all things considered and go the naturopath/homeopath combo. Naturopaths can order most of the same tests as MD's do I believe, and often order a few perhaps more relevant others. And often they try harder. Whoever he or she might be, that person could then perhaps work in tandem with Annette's current doctor. Who knows, with a little spur to cooperate, if he might not decide to try harder too??

Bea, I have been reading on salicylates and oxalates and oh what I found on oxalates surprises me. I think this may very well be my issues and it has for years but the way oxalates work in the body. I think my body finally had so much inflammation it was starting to show in my evry day health. This alone can be why I am having troubel with my joints and why I have loss in my bones.....calcium is not be aborbed because of the oxalates. I read that a candida overgrowth is very common among people who have trouble with oxalates and then the oxalates cannot be broken down properly and then stay in the body causing damage. Luckily just on a whem in trying something to get rid of the itch in my scalp I bought some candida relef and started taking it yesterday.

I am going to do as my research has suggested with supplementing with calcium......I don't feel I can afford more bone loss. And will follow the list of high salicylates and oxalates to try and make a difference.

Bea, I cannot thank you enough for all your help. If I can stop all the inflammation and re-occuring kidney issues/stone formation this would be an end of 26 years of struggles!

[YoloGx]

That is fantastic Annette! I am so glad something seems to actually fit the missing piece of the puzzle for you at last. Am crossing my fingers for you.

I still think you should find a good doctor no matter what however. But one that is open to this kind of new information, yes?? Might be wise to query him or her first.

Meanwhile following this low oxylate diet seems like a good first step.

I wondered about the oxylates since long ago in my herbal studies I noticed that there was a warning about eating high oxylate food especially if you have kidney stones. Well I didn't, but given my other problem with recurring nephritis, I have always tried to limit the really high oxylate foods in my diet. More recently someone on the salicylate sensitivity forum was saying how being on the low oxylate diet is really helping her. She also has had kidney problems too. Am now reading a bit about the new info concerning oxylates and it blows my mind.

It makes me wonder if my friend Graeme might have this problem too since he has massive inflammation and nausea from an unknown cause. It is so bad often it is hard for him to walk. He also has had some bladder irritation that comes and goes. Granted we found a source of possible trace gluten. However he also eats tahini and carob daily both of which are high in oxylates--with stevia which is also high in it too. If he does not resolve his condition by being off the trace gluten, I will suggest this as a possible avenue for exploration.

[GFinDC]

I did the paperwork to request a new primary health provider and found out that I can go off-base to a German doc and get part of the expense reimbursed. I think I need a set of new eyes. When my primary doc deplyed and his stand-in stepeed in was when I was dx w/celiac based on all tests and my medical history.

When I was seen initially by my primary doc, my calcium was high. Doc thought it was due to a bad parathyroid gland. I was sent to a University Hospital on the German economy. Doc took one look at me and told me that I did not have hypercalcemia eventhough I had a high calcium test. They ran all kinds of tests on me. This is where they found the lodged kidneys stones which they measured to be 8mm each and said they were probably over 20 years old. He said these are the type you can do nothing for as the body just makes them. Base urologist said the very exact same thing.

However, now my primary is saying that I not only have these 2 stones but films showed 2-3 more small stones. Neither the German doc or the base urologist. My parathyroids are healthy. Calcium went from hyper to near hypo when I went on a gluten-free diet and in one year calcium has not been an issue. In fact, my stand-in doc wanted me taking 1100 mg of calcium a day because of my bone loss in both legs and back.

Thanks for all the replies.

That sounds good Anette. Seems like the gluten-free diet has made a big improvement then. That's what I was wondering about, the parathyroid glands. So they are ok. How about the magnesium? That's another possible gotcha. My understanding (which is vague) is you need to have magnesium and potassium as well as calcium in your diet. They all work together somehow. Is it possible you are low on magnesium or potassium? Just a thought.

Open Original Shared Link

This one is kind of interesting:

Open Original Shared Link

[YoloGx]

That sounds good Anette. Seems like the gluten-free diet has made a big improvement then. That's what I was wondering about, the parathyroid glands. So they are ok. How about the magnesium? That's another possible gotcha. My understanding (which is vague) is you need to have magnesium and potassium as well as calcium in your diet. They all work together somehow. Is it possible you are low on magnesium or potassium? Just a thought.

Open Original Shared Link

This one is kind of interesting:

Open Original Shared Link

That is an interesting concept "DC" (I'll call you that since the computer makes the first two letters spell gluten free) about the magnesium citrate. R eason I say that is that for those who have salicylate intolerance, taking mag. citrate often is de riguer. Plus taking epsom salt baths which are high in magnesium. Oxylate sensitivity is different but in some ways similar, and sometimes folks have both problems.

I couldn't really follow the first two suggestions--assuming I got the right ones since basically I got a page from Google and went for the top one. Any written in English??

It will be interesting to see what Annette thinks.

Meanwhile I want to study this oxylate sensitivity more. Am just learning of it more fully now myself.

[AVR1962]

That sounds good Anette. Seems like the gluten-free diet has made a big improvement then. That's what I was wondering about, the parathyroid glands. So they are ok. How about the magnesium? That's another possible gotcha. My understanding (which is vague) is you need to have magnesium and potassium as well as calcium in your diet. They all work together somehow. Is it possible you are low on magnesium or potassium? Just a thought.

Open Original Shared Link

This one is kind of interesting:

Open Original Shared Link

Thanks for that link. Info in this broke it down even better than what I had been reading but it tells the importance of magnesium, potassium and calcium in the diet to eliminate the stones and this is what I have been reading. I think my doc is old-school and does not know the latest. I have an appt with urology next week. Yes, the gluten-free diet has helped and yes, my caclium is in normal range once again since going gluten-free, and my parathyroid tests have all come back normal as well.

[AVR1962]

That is an interesting concept "DC" (I'll call you that since the computer makes the first two letters spell gluten free) about the magnesium citrate. R eason I say that is that for those who have salicylate intolerance, taking mag. citrate often is de riguer. Plus taking epsom salt baths which are high in magnesium. Oxylate sensitivity is different but in some ways similar, and sometimes folks have both problems.

I couldn't really follow the first two suggestions--assuming I got the right ones since basically I got a page from Google and went for the top one. Any written in English??

It will be interesting to see what Annette thinks.

Meanwhile I want to study this oxylate sensitivity more. Am just learning of it more fully now myself.

Bea, I am assuming the citrate is the problem with salicylates and did not give that a thought however right now I am going to not take any supplements, take out both salicylates and oxalates and see if the itching will go away. My joints already feel better howevr, I also have not been taxing myself with walks as these stones have really been giving me a time. I still am itching on back and scalp so I will see if staying away from sals will make a difference. Meantime I have an appt with derm and it will be interesting to see if they come up with something for my skin issues.

[GFinDC]

Here is another one that may help. I won't pretend to understand everything on this page but it i may be helpful. It is about renal tube acidosis (RTA) and discusses various causes of it. It is a condition that leads to kidney stones and other problems. They list 4 types of RTA and discuss them. The basic gist seems to be too much acid in the kidneys or an inability of the kidney to remove acid. That leads to kidney stones. I think one of the treatments is baking soda? Maybe somebody smarter will come along and make sense of it.

Open Original Shared Link

Points to Remember

• Renal tubular acidosis (RTA) is a disease that occurs when the kidneys fail to excrete acids into the urine, which causes a person's blood to remain too acidic.
• Without proper treatment, chronic acidity of the blood leads to growth retardation, kidney stones, bone disease, chronic kidney disease, and possibly total kidney failure.
• If RTA is suspected, additional information about the sodium, potassium, and chloride levels in the urine and the potassium level in the blood will help identify which type of RTA a person has.
• In all cases, the first goal of therapy is to neutralize acid in the blood, but different treatments may be needed to address the different underlying causes of acidosis.

[YoloGx]

Here is another one that may help. I won't pretend to understand everything on this page but it i may be helpful. It is about renal tube acidosis (RTA) and discusses various causes of it. It is a condition that leads to kidney stones and other problems. They list 4 types of RTA and discuss them. The basic gist seems to be too much acid in the kidneys or an inability of the kidney to remove acid. That leads to kidney stones. I think one of the treatments is baking soda? Maybe somebody smarter will come along and make sense of it.

Open Original Shared Link

Points to Remember

• Renal tubular acidosis (RTA) is a disease that occurs when the kidneys fail to excrete acids into the urine, which causes a person's blood to remain too acidic.
• Without proper treatment, chronic acidity of the blood leads to growth retardation, kidney stones, bone disease, chronic kidney disease, and possibly total kidney failure.
• If RTA is suspected, additional information about the sodium, potassium, and chloride levels in the urine and the potassium level in the blood will help identify which type of RTA a person has.
• In all cases, the first goal of therapy is to neutralize acid in the blood, but different treatments may be needed to address the different underlying causes of acidosis.

Wow this is interesting article DC. I know for myself I often need to take some baking soda so I can get to sleep.--and yes it really does agree with me. I also have a history of having trouble having enough electrolytes. Using baking soda as a remedy is often common for those who have salicylate sensitivity--which I also have.

I wonder now if I should have the ph and potassium etc. checked in my blood as well as urine since in the past I had real problems with my kidneys even though I do not have kidney stones. Its one reason I used herbs for years and years. Now I don't have that option however due to the salicylate sensitivity. So knowing more can only help.

It seems like one of these conditions are even more possibly relevant to Annette's condition given she struggles with kidney stones etc.

The Oxylate connection seems pertinant nevertheless even though the writers of this article are not aware of the potentially adverse precipitating condition of being sensitive to oxylates.

Bea

[GFinDC]

Hi Bea,

I am not smart on oxylates myself, but did some reading based on your info. Seems like they are a possible problem for some people anyway. Of course we are all some people so no reason they couldn't be an issue. The Whole Foods site has a little table listing oxylates levels in some foods. Thanks for posting about them!

Open Original Shared Link

Calcium oxalate (in archaic terminology, oxalate of lime) is a chemical compound that forms needle-shaped crystals, known in plants as Open Original Shared Link. A major constituent of human Open Original Shared Link, the chemical is also found in beerstone, a scale that forms on containers used in Open Original Shared Link. Its chemical formula is CaC₂O₄ or Ca (COO)₂.

Calcium oxalate crystals in the urine are the most common constituent of human Open Original Shared Link, and calcium oxalate crystal formation is also one of the toxic effects of Open Original Shared Link.

Open Original Shared Link

Oxalates are naturally-occurring substances found in plants, animals, and in humans. In chemical terms, oxalates belong to a group of molecules called organic acids, and are routinely made by plants, animals, and humans. Our bodies always contain oxalates, and our cells routinely convert other substances into oxalates. For example, vitamin C is one of the substances that our cells routinely convert into oxalates. In addition to the oxalates that are made inside of our body, oxalates can arrive at our body from the outside, from certain foods that contain them.

• Fruits
  • blackberries, blueberries, raspberries, strawberries, currants, kiwifruit, concord (purple) grapes, figs, tangerines, and plums

  [*]Vegetables (see Table 1 for additional information)

  • spinach, Swiss chard, beet greens, collards, okra, parsley, leeks and quinoa are among the most oxalate-dense vegetables
  • celery, green beans, rutabagas, and summer squash would be considered moderately dense in oxalates
• Nuts and seeds
  • almonds, cashews, and peanuts

  [*]Legumes

  • soybeans, tofu and other soy products
• Grains
  • wheat bran, wheat germ, quinoa (a vegetable often used like a grain)

  [*]Other

  • cocoa, chocolate, and black tea

Table 1

Raw VegetableOxalate contentmilligrams per 100 gram serving Spinach750 Beet greens 610 Okra146 Parsley100 Leeks89 Collard greens74

[YoloGx]

Hi Bea,

I am not smart on oxylates myself, but did some reading based on your info. Seems like they are a possible problem for some people anyway. Of course we are all some people so no reason they couldn't be an issue. The Whole Foods site has a little table listing oxylates levels in some foods. Thanks for posting about them!

Open Original Shared Link

Calcium oxalate (in archaic terminology, oxalate of lime) is a chemical compound that forms needle-shaped crystals, known in plants as Open Original Shared Link. A major constituent of human Open Original Shared Link, the chemical is also found in beerstone, a scale that forms on containers used in Open Original Shared Link. Its chemical formula is CaC₂O₄ or Ca (COO)₂.

Calcium oxalate crystals in the urine are the most common constituent of human Open Original Shared Link, and calcium oxalate crystal formation is also one of the toxic effects of Open Original Shared Link.

Open Original Shared Link

Oxalates are naturally-occurring substances found in plants, animals, and in humans. In chemical terms, oxalates belong to a group of molecules called organic acids, and are routinely made by plants, animals, and humans. Our bodies always contain oxalates, and our cells routinely convert other substances into oxalates. For example, vitamin C is one of the substances that our cells routinely convert into oxalates. In addition to the oxalates that are made inside of our body, oxalates can arrive at our body from the outside, from certain foods that contain them.

• Fruits
  • blackberries, blueberries, raspberries, strawberries, currants, kiwifruit, concord (purple) grapes, figs, tangerines, and plums

  [*]Vegetables (see Table 1 for additional information)

  • spinach, Swiss chard, beet greens, collards, okra, parsley, leeks and quinoa are among the most oxalate-dense vegetables
  • celery, green beans, rutabagas, and summer squash would be considered moderately dense in oxalates
• Nuts and seeds
  • almonds, cashews, and peanuts

  [*]Legumes

  • soybeans, tofu and other soy products
• Grains
  • wheat bran, wheat germ, quinoa (a vegetable often used like a grain)

  [*]Other

  • cocoa, chocolate, and black tea

Table 1

Raw VegetableOxalate contentmilligrams per 100 gram serving Spinach750 Beet greens 610 Okra146 Parsley100 Leeks89 Collard greens74

Thanks for the info. gluten-free! Its nice to have such simple run downs on oxylates in various foods.

Apparently however there is a lot more to this than on first perusal. Oxylates can be considered an anti nutrient, mitochondrial toxin and disruptor of cell chemistry this site I just looked at suggests. The thing is is that some folks just don't have the correct probiotics they need to deal with oxylates that well if at all.

One does not have to have kidney problems necessarily for oxylates to be a problem. It can create gut dysbiosis for instance, fibromyalgia like symptoms, rashes and hives, gut pain, mental confusion, terrible insomnia etc.

The nice thing is that there is a yahoo support group now for those with oxylate sensitivity. Its also good that by going off the medium and heavy oxylates one can improve one's general health and be less sensitive in the future. This is what I am really looking for.

Its also good there is an actual test one can have done just to see if its a problem or not. Its called the Organic Acid Test or OAT. I am thinking of having one done if its not too expensive since I do have terrible hives etc. and still have problems sleeping to mention just a couple of other common symptoms. Having salicylate sensitivity and gluten sensitivity is also common too for this condition--not to mention multiple exposures to heavy duty antibiotics.

[AVR1962]

Hi Bea,

I am not smart on oxylates myself, but did some reading based on your info. Seems like they are a possible problem for some people anyway. Of course we are all some people so no reason they couldn't be an issue. The Whole Foods site has a little table listing oxylates levels in some foods. Thanks for posting about them!

Open Original Shared Link

Calcium oxalate (in archaic terminology, oxalate of lime) is a chemical compound that forms needle-shaped crystals, known in plants as Open Original Shared Link. A major constituent of human Open Original Shared Link, the chemical is also found in beerstone, a scale that forms on containers used in Open Original Shared Link. Its chemical formula is CaC₂O₄ or Ca (COO)₂.

Calcium oxalate crystals in the urine are the most common constituent of human Open Original Shared Link, and calcium oxalate crystal formation is also one of the toxic effects of Open Original Shared Link.

Open Original Shared Link

Oxalates are naturally-occurring substances found in plants, animals, and in humans. In chemical terms, oxalates belong to a group of molecules called organic acids, and are routinely made by plants, animals, and humans. Our bodies always contain oxalates, and our cells routinely convert other substances into oxalates. For example, vitamin C is one of the substances that our cells routinely convert into oxalates. In addition to the oxalates that are made inside of our body, oxalates can arrive at our body from the outside, from certain foods that contain them.

• Fruits
  • blackberries, blueberries, raspberries, strawberries, currants, kiwifruit, concord (purple) grapes, figs, tangerines, and plums

  [*]Vegetables (see Table 1 for additional information)

  • spinach, Swiss chard, beet greens, collards, okra, parsley, leeks and quinoa are among the most oxalate-dense vegetables
  • celery, green beans, rutabagas, and summer squash would be considered moderately dense in oxalates
• Nuts and seeds
  • almonds, cashews, and peanuts

  [*]Legumes

  • soybeans, tofu and other soy products
• Grains
  • wheat bran, wheat germ, quinoa (a vegetable often used like a grain)

  [*]Other

  • cocoa, chocolate, and black tea

Table 1

Raw VegetableOxalate contentmilligrams per 100 gram serving Spinach750 Beet greens 610 Okra146 Parsley100 Leeks89 Collard greens74

GFinDC, thanks for the links. I have started on my low oxalate diet and so far I am not finding it as hgard as I thought it would be. My diet was heavy on potatoes, avocados, and spinach so for that this will be a bit more difficult but well worth it to find out. When you start reading, like Bea mentioned, what damage oxalates can do to the body it is surprising.

[YoloGx]

GFinDC, thanks for the links. I have started on my low oxalate diet and so far I am not finding it as hgard as I thought it would be. My diet was heavy on potatoes, avocados, and spinach so for that this will be a bit more difficult but well worth it to find out. When you start reading, like Bea mentioned, what damage oxalates can do to the body it is surprising.

Hi Annette,

Just remember to go at going off the high oxylates slowly at first. A gradual process is what is recommended to avoid excess problems from "dumping" of oxylates which could otherwise freak out your already fragile system. This is also why they suggest you take calcium citrate 20 minutes before your meals, and mag. citrate afterwards, to help bind the oxylates.. Did you see that?? Am loving learning all this new info.

Am going to order the Organic Acid Test through my naturopath this coming Wednesday. If I do end up having this condition, going on the low oxylate diet may finally address my seemingly intractable insomnia as well as hives etc. Though at the same time, it will be hard to find veggies I can eat given my problem with salicylates too.. Iceburg lettuce and frozen peas anyone?? LOL!

[mushroom]

Iceburg lettuce and frozen peas anyone?? LOL!

I could do the iceberg lettuce (ugh!) but would have to use the frozen peas as an icepack!! (LOLouder!)

[AVR1962]

Hi Annette,

Just remember to go at going off the high oxylates slowly at first. A gradual process is what is recommended to avoid excess problems from "dumping" of oxylates which could otherwise freak out your already fragile system. This is also why they suggest you take calcium citrate 20 minutes before your meals, and mag. citrate afterwards, to help bind the oxylates.. Did you see that?? Am loving learning all this new info.

Am going to order the Organic Acid Test through my naturopath this coming Wednesday. If I do end up having this condition, going on the low oxylate diet may finally address my seemingly intractable insomnia as well as hives etc. Though at the same time, it will be hard to find veggies I can eat given my problem with salicylates too.. Iceburg lettuce and frozen peas anyone?? LOL!

LOL, I hear ya Bea! Last night searching for something for dinner I was thinking, 'yum, pears and green beans.' I actually grilled a pear and it was good! Yes, I did read about the dumping and the supplements. I don't realy look fwd to anymore detox-like symptoms but I think I have to try.

I see my urologist today and I am going to ask him about a plasma oxalate test and the Great Plains Organic Acid test. If he denies it I will pay for it out of my pocket.

Went for a walk yesterday with my dogs again......something is definately not right. I am not sure the oxalate are involved, I guess there is the possibility after everything I have read. I am wondering if part of what I am dealing with is coming from my back. My muscles in my legs were hurting on the walk. I could feel sharp pains going from my low back to my hips. I got home and soaked in hot water with jets on my back but this morning I was sore in my muscles as well as my joints in my knees, ankles, low back and hips. I mentioned this to my doc last week as this happened last time I went for an hour walk.....an hour walk is nothing for me......he claimed it was just usual aches and pains. this is not usual aches and pains.

I decided to go back on half of my normal dose of b complex. I still very well may have some nuero issues going on and that's probably why I was having issues with tingling and numbness when I went off. Plus I think the B complex might also help with circulation which I seem to be lacking.

Annette

[YoloGx]

LOL, I hear ya Bea! Last night searching for something for dinner I was thinking, 'yum, pears and green beans.' I actually grilled a pear and it was good! Yes, I did read about the dumping and the supplements. I don't realy look fwd to anymore detox-like symptoms but I think I have to try.

I see my urologist today and I am going to ask him about a plasma oxalate test and the Great Plains Organic Acid test. If he denies it I will pay for it out of my pocket.

Went for a walk yesterday with my dogs again......something is definately not right. I am not sure the oxalate are involved, I guess there is the possibility after everything I have read. I am wondering if part of what I am dealing with is coming from my back. My muscles in my legs were hurting on the walk. I could feel sharp pains going from my low back to my hips. I got home and soaked in hot water with jets on my back but this morning I was sore in my muscles as well as my joints in my knees, ankles, low back and hips. I mentioned this to my doc last week as this happened last time I went for an hour walk.....an hour walk is nothing for me......he claimed it was just usual aches and pains. this is not usual aches and pains.

I decided to go back on half of my normal dose of b complex. I still very well may have some nuero issues going on and that's probably why I was having issues with tingling and numbness when I went off. Plus I think the B complex might also help with circulation which I seem to be lacking.

Annette

I agree with you Annette, with all the neuro issues you have had the B complex is probably essential. I am hoping that by taking the B complex you can walk more comfortably soon!

I love to walk each day too, and can understand how awful it is not to be able to. Just yesterday I could hardly walk, my diaphragm and belly was so painful. I hobbled about a quarter of the walk I usually go on. My extremities also got extraordinarily cold--like what you are experiencing.

I believe the reason I was feeling this way is that I had just been glutened the day before from another random glutening. I had diarrhea and a migraine that I was finally getting over yesterday.

I think all this was due to my brother coming over to visit. I think he often has crumbs on his clothes he carries in and then sits on my chair I use at the dinner table. He washes his hands like I asked him to, however I watched him and noticed he does it half heartedly; likely a great deal of the gluten goes onto my towel since he fails to use the guest towel and does not really soap up. I didn't realize that earlier and washed and dried with the same towel. Its a crap shoot where the gluten came from. But I have my strong suspicion since this has not been the first time and in fact has become a terrible pattern which often ruins several days for me.

However my brother, while well meaning in some respects, is very self sensitive, protective and forgetful, and not at all sensitive or considerate of the needs of others. I am probably going to have to ask him not to come into the house. I just can't deal with this getting glutened from CC each weekend he comes by!!

Meanwhile, have you tried the co-enzyme B complex? For me it has proven to be far easier to metabolize. I take it on an empty stomach. Without it after a while my heart resumes its old racing pattern. My dentist told me too that with it, my gums way improved vs not taking it. So my belief is that it helps against certain kinds of inflammation, especially taken with nattokinase.

Have you also considered that taking minerals might be essential for you too?? My general mineral absorption is still very poor even after 4 years on this completely gluten free diet. I thus have found that taking mineral supplements is important, including the silica drops in order for my muscles and joints to be strong rather than weak. The silica in particular helps with replacing cartalidge as well as bone. I think too that the minerals help with maintaining nerve health.

[YoloGx]

Meanwhile, if I do have this problem with the oxylates, I don't look forward to exchanging my brown rice for white. However I will do it if necessary. This trouble I have with hives and psoriasis as well as difficulty falling asleep at night needs to go!! It really messes with the quality of my life. Taking sleeping pills is not a cure since they leave me feeling way too groggy throughout the day. Why even take them? Its better for me to sleep late and get up feeling refreshed.

Last night I made my first batch of sourdough rice bread. It turned out hard on the outside especially. However I love the taste! I bet if I made it with white rice it would be softer of course...so there would at least be some silver lining there.

Many of the other Low Oxylate Diet (LOD) staples such as coconut milk etc. are off the radar for me since they are high in salicylates... I don't even do well with water filtered through a charcoal filter since the filter are made from coconut hulls.

Nevertheless I see one of my salicylate sensitive buddies online there at the LOD site--Nanci Swell. So I will ask her what the heck she eats.