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era
06-11-2007, 07:44 PM
I am interested in knowing if anyone here has researched what the link between gluten and pyroluria might be, if there is one. I've looked thru all the posts in
the Gluten Sensitivity/Celiac forum, and although there are some mentions of pyroluria, there is no indication of a causal link other than that "The Gluten File"
says there is an "association" between gluten and pyroluria, without giving any detail.

My interest in this stems from my experience with gluten causing Hashimoto's. When I went off gluten in June 2003, my anti-thyroid antibodies gradually decreased to zero. This was a huge help, in that getting rid of the antibodies stopped the severe anxiety I would have whenever I tried to take a therapeutic dose of thyroid hormone.

But I continued to have many neurological problems until spring 2007, when I was diagnosed with pyroluria and went onto a "pyroluria formula" which got rid of the neurological problems.

Clearly, gluten was the causal factor that messed up my thyroid. What I'd like to know is, if anyone has heard or seen any evidence that gluten can be a causal factor for pyroluria. I have absolutely no reason to think I had pyroluria when I was young; I'm mystified as to where it came from. Although the conventional wisdom is that pyroluria is always genetic, I don't buy that, because I've read that all the porphyrias can be either genetic, or acquired. I presume "acquired" means that something like a food allergy or environmental toxin, causes one to "acquire" the syndrome.

jcc
06-11-2007, 09:19 PM
Hi!

I'm one of a few with personal interest in this since my daughter tested positive for pyroluria.

I've had a few discussion with others about the gluten/casein sensitivity association. Information about pyroluria is not widely available or great in amount. Joan Mathews Larson book Depression Free Naturally talks about both Pyroluria and also about gluten/casein sensitivity. I'm not sure (can't remember, and I loaned the book out and it was never returned) if she draws direct connections, or just talks about them individually... in how they may be involved in mental health issues, including depression, bipolar, alcoholism, schizophrenia.

My thinking is that they just often go together~ I'm not sure what CAUSES what. I've tried to ask the same question, but didn't get too far. I think oxidative stress might be a connector.

I'll try to gather up a few odds and ends to connect a few dots. Not that I can answer your question, because I don't have an answer... but maybe you can make a few more connections.

Here are links to two articles about pyroluria, that at least mention oxidative stress~
Pyroluria: Hidden Cause of Schizophrenia, Bipolar, Depression, and Anxiety Symptoms (http://www.alternativementalhealth.com/articles/pyroluria.htm) by Woody McGinnis, M.D.
Commentary on Nutritional Treatment of Mental Disorders: Pyrrole Disorder (http://www.alternativementalhealth.com/articles/walshMP.htm#Py) by Willam Walsh, Ph.D.

From the McGinnis article~

On the preceding bases, a first hypothesis: Mauve may be a significant contributer to oxidative stress, so may be a good biomarker for oxidative stress.


I've talked with two integrative medicine doctors about pyroluria. One is Dr. Woody McGinnis, via email. The other is Dr. Hicks, also an integrative medicine doctor. Both of these doctors recommended IgG food allergy testing, and removing any foods one tested positive for. It just happens gluten and casein sensitivity are top offenders and worst offenders when it comes to immune system issues and neurological associations. They both recommended my daughter remove these foods if she showed IgG antibodies to them.

Dr. McGinnis seemed much more of the opinion that Pyroluria is a primary condition/factor, that the pyroluria comes first.

Dr. Hicks said the postitive test for pyroluria was meaningful, but his view was it was just one of many things going wrong, and the primary problem for my daughter was an immune system problem. He rather downplayed the pyroluria, I thought.

Dr. McGinnis is one of the authorities on it, though. I was hearing for a while there was going to be a book coming out on it, but haven't heard of one yet. ANd of course, our 'regular' doctors dismiss it altogether, saying it is VERY CONTROVERSIAL.

To connect oxidative stress to gluten/casein sensitivity, from William Walsh's narrative on oxidative stress (not in direct reference to pyroluria):
http://www.alternativementalhealth.com/articles/walshMP.htm#Ox


The casein-free, gluten-free diet often results in rapid striking improvements. However, nutritional supplements which overcome G.I. tract oxidative stress can make the CF/GF diet unnecessary.

Normalization of zinc, metallothionein, and glutathione in the G.I. tract isn't difficult to accomplish. It's a lot easier to take a couple of capsules daily than this difficult diet. It takes about 6-8 weeks for the G.I. tract to get "fixed" using this therapy.

We've had many patients who were extremely sensitive to dairy and wheat.... and did marvelously after the CF/GF diet. Many of these same patients completely lost their sensitivity to casein and gluten after the antioxidant supplementation..... and now can eat a normal diet without a problem. (Aug 21, 2003)

It's becoming increasingly clear that oxidative stress has an important role in mental illness. Since psychic stress increases oxidative stress in the brain, sudden easing of emotional traumae would be expected to have a direct and beneficial chemical effect on the brain.




I'd love to know more about your symptoms of pyroluria if you feel alright about discussing it. For my daughter, I'd say the most worrisome symptoms were depression, anxiety, and mood swings.


Cara

era
06-11-2007, 11:50 PM
Hi!

I'm one of a few with personal interest in this since my daughter tested positive for pyroluria.

I've had a few discussion with others about the gluten/casein sensitivity association. The information available on pyroluria is not great. Joan Mathews Larson book Depression Free Naturally talkes about both Pyroluria and also about gluten/casein sensitivity. I loaned the book out, though, and can't remember if she made any causal connections.

My thinking is that they just tend to go together~ but perhaps it is more about the oxidative stress associated with pyroluria, and the oxidative stress causing gut damage which then triggers food sensitivity in general, with gluten and casein usually topping the list.

I'll try to gather up a few odds and ends to connect a few dots. Not answer your question, because I don't have an answer... but maybe make a few more connections.

Cara

Thanks for the insight. That is, the idea that pyroluria might actually be a causal factor for gluten intolerance, rather than the other way around. Retaking the gluten sensitivity test after I've been on the pyroluria treatment for about a year should provide an answer. I hope it is the case that pyroluria can cause food sensitivity, because staying 100.00% squeaky clean of gluten is a giant HASSLE!

jcc
06-12-2007, 12:42 AM
I was called away from my computer for about three hours right in the middle of adding to my post above. So... you might want to take another look, because I may have added some things since you last saw it.

Cara

era
06-13-2007, 12:12 AM
Hi!

I'd love to know more about your symptoms of pyroluria if you feel alright about discussing it. For my daughter, I'd say the most worrisome symptoms were depression, anxiety, and mood swings.

Cara

Cara,

The single worst pyroluria symptom I had was mind-numbing insomnia, night after night. The other biggies, in approximate order of imortance, were anxiety, mood shifts, and depression. I also noticed various physical symptoms but many of those could have been related to thyroid failure caused by gluten intolerance. At one point I was diagnosed with almost complete adrenal failure.

I wrote down the history of my 15+ year illness, which contains almost all my symptoms in some detail. If you want to read the history, it's about 6 pages. You can fetch a copy from my work ftp server:

ftp://ftp.ucar.edu/era/mi/MysteryIllness.htm

northernlights
06-14-2007, 07:20 AM
I remember I read about pyroluria at the german thyroid forum.
Here is a thread I found but there are more.
http://www.ht-mb.de/forum/showthread.php?t=1060427&highlight=pyrol%2A


http://www.ht-mb.de/forum/showthread.php?t=1066957&highlight=pyrol%2A

nora

glenntaj
06-14-2007, 07:42 AM
--with pyroluria at the Braintalk Vitamin forum:

http://brain.hastypastry.net/forums/showthread.php?t=1932

jcc
06-20-2007, 09:38 PM
Thanks, Glenn. I hadn't been back to read that in a long time. I was surprised by how many have posted about their pyroluria diagnosis!! It gave me an idea!! I'm going to email Ona.

Cara

jcc
06-20-2007, 09:40 PM
I remember I read about pyroluria at the german thyroid forum.
Here is a thread I found but there are more.
http://www.ht-mb.de/forum/showthread.php?t=1060427&highlight=pyrol%2A


http://www.ht-mb.de/forum/showthread.php?t=1066957&highlight=pyrol%2A

nora

Hi nora!

I can't read german, but I think I see one post about Hashimoto's and pyrrole disorder. That would be most interesting! I will have to try to find a language converter... I think I can do it through google. Thanks!

Cara

annelb
06-20-2007, 10:04 PM
There is a lot there. Do you have anything specific you want translated? I work with a woman from Germany and she may translate for us.

Anne

jcc
06-21-2007, 01:14 AM
I just want to know if I was reading (ha!) I should say seeing something.... about Hashimoto's and pyroluria being associated! The link doesn't seem to be working.

Kryptopyrrolurie und Hashimoto
http://www.schilddruesenpraxis.de/lex_kpu.html

And then, what connection to HPU?

Cara

halsgluten
06-22-2007, 12:55 PM
.... the idea that pyroluria might actually be a causal factor for gluten intolerance, rather than the other way around. ...
Remember, pyroluria is generally the result of excessive red cell death.

I don’t accept that it is the excessive pyrroles that are the real problem. I don’t think hemolytic (from hemoglobin) pyrroles are particularly toxic in themselves other than the flushing of B6 and zinc, but there are abundant toxicities up the metabolic chains that lead to excessive pyrrole!

Common precursors to excessive pyrrole are excessive bilirubin, excessive hemoglobin, and excessive microbial hemolytic (blood) poisons. Excessive bilirubin and hemoglobin are both neurotoxic. At least some of the microbial hemolytic toxins are also neurotoxic.

Excessive bilirubin comes from excessive hemoglobin, and hemoglobin comes from red blood cell death (lysis). Non-genetic, excessive red blood cell death is cause by either massive physical injury or microbial infection.

So, if you have chronic hemolytic pyroluria, the most likely causes are:
You are a lousy martial artist (lots of bruising)
You have genetic weakness in your red blood cells
You have a chronic microbial infection, probably in the intestines (which leads us back to the question of celiac disease)

Given that hemolytic pyrroles are not so directly neurotoxic as their causes are, I suggest that the root causes of pyroluria, not pyroluria itself, are likely root causes of the associated neurological and psychological conditions.

While I think it is fair to ask whether microbial infection increases the risk of celiac disease, or vice versa, it is clear to me that pyroluria is not a cause of celiac disease but rather one of many possible symptoms of celiac disease.

Hal

See also:
http://brain.hastypastry.net/forums/showthread.php?t=16265

jcc
06-22-2007, 01:53 PM
Thanks for the thoughtful post, Hal.

Of the two doctors I saw, one believes pyroluria to be a primary condition, a genetic metabolic disorder. The other was not so clear, saying it was important/meaningful, but just saying 'it all went together'. I got the direct impression he did not consider it to be "the" primary problem, but a secondary/related problem.

Given that hemolytic pyrroles are not so directly neurotoxic as their causes are, I suggest that the root causes of pyroluria, not pyroluria itself, are likely root causes of the associated neurological and psychological conditions.

I'm just thinking outloud here~ since pyroluria is largely treatable with nutritional supplementation to fix the vitamin B6 and zinc deficiency, along with a little boost of antioxidants and other supporting nutrients... I think I believe the associated neurological and neuropyschological conditions seen in pyroluria are a direct result of the vitamin deficiency. There is a lot out there describing depression, anxiety, panic, seizures, etc, related to B6 deficiency.

Now, is the vitamin deficiency really caused by the pyroluria, or is it due to malabsorption issues?

Part of the overall treatment of pyroluria is to identify food sensitivies, and eliminate those foods. My daughter has not subscribed to this part yet, but did improve on the vitamin therapy. Perhaps the 'quick fix'. I wonder, if the food sensitivies are addressed, whether a "pyroluric" would continue to experience pyroluric episodes? The nutritional supplementation makes absolute sense to bring things back into balance in the short run, but might a pyroluric remain in balance without the supplementation in the long run.... through dietary changes alone (correcting an underlying malabsorption problem)?

Do most pyrolurics have issues with food sensitivies?

The reason the part about excess bilirubin caught my attention, is that when I was B12 deficient, one of my lab abnormalties dismissed because it wasn't abnormal enough... was an out of range H bilirubin. ????? Once I corrected the B12 deficiency, it has never been 'off' again. What do you think my elevated bilirubin was a result of ?? I've never been tested for pyroluria, and don't feel symptomatic of it now, but looking back there was a point in my life where the symptoms did fit. I've often wondered if my low B12 was actually a result of low B6 (don't they 'need each other'... and a deficiency in one can cause a deficiency in the other?) I benefit from taking both.

Any more thoughts?

While I think it is fair to ask whether microbial infection increases the risk of celiac disease, or vice versa, it is clear to me that pyroluria is not a cause of celiac disease but rather one of many possible symptoms of celiac disease.

I'm still not sure... seems sort of chicken and egg like to me...but I do not have a clear (or even foggy) understanding of the biochemistry of any of this. Now, how does the stress factor - factor in? Because, most definitely, my daughter spirals down during times of stress. The good news is that she (or I) can recognize that and vamp up her vitamin regimen.


Cara

halsgluten
06-23-2007, 03:05 AM
Note, like AGA IgG tests, the pyroluria test is easy to botch.
pyroluria is largely treatable with nutritional supplementation to fix the vitamin B6 and zinc deficiency
One does not treat pyroluria with nutritional supplementation, one manages it with nutritional supplementation. Pyroluria is excessive pyrroles in the urine -- vitamin B6 and zinc do nothing to lower the pyrroles so the pyroluria continues. The nutritional supplementation merely replaces the specific nutrients that the excessive pyrroles continue to flush out.
Now, is the vitamin deficiency really caused by the pyroluria, or is it due to malabsorption issues?
With Hemolytic anemia, the B6 and zinc deficiencies are not malabsorption issues. Vitamin B6 and zinc are specifically lost through the urine in the process of ridding the body of pyrrole. The more pyrrole you have to get rid of, the more B6 and zinc it takes. This does not exclude the root cause of the excessive pyrroles also causing malabsorption, SIBO would be just such a cause.
when I was B12 deficient, one of my lab abnormalties dismissed because it wasn't abnormal enough... was an out of range H bilirubin. ????? Once I corrected the B12 deficiency, it has never been 'off' again.
Was it corrected by taking supplements or by fixing the cause?
Of the two doctors I saw, one believes pyroluria to be a primary condition ...
...seems sort of chicken and egg like to me
Pyrroles do not arise of themselves. Everyone has them. It is a byproduct of red blood cell death. Red blood cells die. Red blood cells die faster when poisoned by biofilms. People with hemolytic biofilm infections go through their RBC red blood cells faster, so they have pyroluria.
Johns Hopkins
1. Folic acid deficiency or 2. Vitamin B12 deficiency:
= Reticulocyte count low; Indirect bilirubin high; MCV high
Hemolytic anemia:
= Reticulocyte count high; indirect bilirubin high
= High LDH; fragmented RBCs, spherocytes, schistocytes
Still, I should think Hemolytic anemia could also drop one’s B12 levels since your bones are cranking out those red blood cells.

Hal

"Hearts and kidneys are tinker toys!" :)

jcc
06-24-2007, 06:19 PM
Thanks, Hal,



Now, is the vitamin deficiency really caused by the pyroluria, or is it due to malabsorption issues?


I believe my daughters symptoms were mostly directly a result of vitamin deficiency, B6 in particular. The question I was asking is whether the vitamin deficiency was a result of pyroluria (flushing of B6/zinc), or from malabsorption due to gluten sensitivity. Or both. The neurological and neuropyschiatric symptoms associated with B6 deficiency are well documented.

Pyrroles do not arise of themselves. Everyone has them. It is a byproduct of red blood cell death. Red blood cells die. Red blood cells die faster when poisoned by biofilms. People with hemolytic biofilm infections go through their RBC red blood cells faster, so they have pyroluria.

Pyroluria is excessive pyrroles in the urine -- vitamin B6 and zinc do nothing to lower the pyrroles so the pyroluria continues.

It was my understanding that the pyrrole levels do normalize with nutritional supplementation.... Don't they? I thought the 'right amount' of B6/zinc for pyroluria management varies by individual and is determined by adjusting the B6/zinc and supporting nutrients, and monitoring the pyrrole levels until they drop back to normal levels? And that becomes the 'right amount' of B6/zinc for that individual to 'manage' their pyroluria.

It leaves me wondering if nutritional deficiency is a problem on the front end and back end of they 'pyroluric' condition? Does nutritional deficiency result in elevated pyrrole levels in the first places, and then the further flushing of B6/zinc cause an even bigger deficiency....with more exaggerated symptoms? The downward spiral they talk about with pyroluria...?

I'm going to admit, I just haven't spent much time reading about this and trying to figure this all out... so I am shooting from the hip with my questions. I just know that my daughter responded remarkably and quickly to the nutritional supplementation, from serious depression/anxiety to completely fine...within about 3 weeks time. The subject matter has been too complicated for me to want to tackle... but the reality that gluten and other food sensivity seems to go along with this, at least sometimes... does make me curious about how that interelates. Hope I don't sound as 'lost' as I feel... :o.

Cara

annelb
06-24-2007, 10:56 PM
Hal said People with hemolytic biofilm infections go through their RBC red blood cells faster, so they have pyroluria.


That is the question I asked Dr Betsy Hendricks (http://www.betsyhendricksmd.com/retailer/events/ret_events.asp?storeID=D278E726F2A84DF68763C29E742 B61DF) yesterday. She gave a presentation about chronic infection involving biofilms being related to autism and fibromyalgia. I asked her if there may also be a connection to pyroluia. She did not look at me as though I was crazy to suggest this.
Anne

halsgluten
06-25-2007, 02:32 AM
Wow, there are only two old references to pyroluria on Pubmed; strange, I should at least be able to find a simple biochemical description of Kryptopyrrole (supposedly a complex of some sort of pyrrole, zinc, and B6).
Heleniak EP, Lamola SW. A new prostaglandin disturbance syndrome in schizophrenia: delta-6-pyroluria. Med Hypotheses. 1986 Apr;19(4):333-8. Review.

Cruz R, Vogel WH. Pyroluria: a poor marker in chronic schizophrenia.
Am J Psychiatry. 1978 Oct;135(10):1239-40.
WebMD has nothing on pyroluria; but then, neither does http://www.quackwatch.org/.
It seems hard to me to find current medical research on pyroluria. Maybe it could be studied under biliuria but that doesn't yeild any studies of B6 and zinc either.

National Library for Health "What is pyroluria, is it an accepted clinical entity and what are the treatment?" http://www.clinicalanswers.nhs.uk/index.cfm?question=1208

It was my understanding that the pyrrole levels do normalize with nutritional supplementation.... Don't they?
....
And that becomes the 'right amount' of B6/zinc for that individual to 'manage' their pyroluria
OK, caviate, I am having trouble finding independent documentation of the pyroleuria effect, so at present, my comments must be taken as extrapolations of the theories presented by pyroleuria advocates.

It strikes me that supplientation helps the body get rid of the excessive pyrrole, but since shortage B6 and zinc aren’t posed as the cause of excessive pyrrole formation, suplimentation should not slow down the excessive pyrrole formation. That is, pyrrole should drop in the blood, but not in the urine. Hmmm, maybe the answer in inclusion of kryptopyrrole (aptly named, I can’t find science on it). Taking it as given that kryptopyrrole is a complex of some sort of pyrrole, zinc, and B6; then a shortage of zinc and B6 caused by too much pyrrole should result in high pyrrole and low kryptopyrrole in the urine and treatment by high dose zinc and B6 would should result in low pyrrole and high kryptopyrrole. Do any of the pyroluria advocates write about relative pyrrole and kryptopyrrole levels?

It seems that the “right amount” of B6 and zinc should track a person’s pyrrole formation, plus what other B6 and zinc needs you have, plus make up for any malabsorption you may have.

The question I was asking is whether the vitamin deficiency was a result of pyroluria (flushing of B6/zinc), or from malabsorption due to gluten sensitivity. Or both. ...
It leaves me wondering if nutritional deficiency is a problem on the front end and back end of they 'pyroluric' condition?
If you are malabsorbing B6 and zinc, and you are producing too much pyrrole, then I would say that you have two strikes against your B6 and zinc levels.

I’ve just read that pyroluria advocates consider the pyrrole source to be failures in hemoglobin formation, rather than hemoglobin from failed red blood cells as I suggest. I say both conditions exist as sources of excessive pyrroles.

That reminds me, Cara, B12 shortage from malabsorption or from vegetarian diet results in failure in the formation of red blood cell, ...hmmm..., the hemoglobin (16 pyrroles each) that was forming for the failing blood cell has to go somewhere. Red blood cells are maybe 5% pyrrole.
Does nutritional deficiency result in elevated pyrrole levels in the first places, and then the further flushing of B6/zinc cause an even bigger deficiency....with more exaggerated symptoms? The downward spiral they talk about with pyroluria...?
GOOD, question, does B6 or zinc deficiency some how cause hemoglobin failure? If so, that would be positive feedback, but the body is built of negative feed back systems. I suggest the downward spiral might be attributed to the general progressive degeneration of things like celiac disease, that is, the injury is very slow, but at some point more and more of the stressed systems just start breaking down.

Hal

jcc
06-25-2007, 12:45 PM
Thanks again, Hal.

There is not much of anything anywhere on pyroluria, and if you ask a mainstream doctor about it... at least mine.. says it is very controversial. So is gluten sensitivity without celiac disease, though, so that doesn't mean a whole lot to me. And, I've seen dramatic improvement in my children when addressing these issues, so on a common sense level... I'm a believer in both.

Just in the last few years since my daughter tested positive, the number of labs testing for elevated pyrroles has increased. and although there is still a lack of information.... the number of pages you can google up has exploded. Still, they seem to be all the "alternative" type labs, that also do IgG food allergy testing, etc.

I have read that alternative medicine doctors have been treating pyroluria successfully for decades.

This is the best collective source of information out there on pyroluria, and it gives a list of some of the related research...some being quite old.
http://www.nutritional-healing.com.au/content/articles-content.php?heading=Pyroluria

I've been hearing there is going to be a book coming out soon, but that was a couple of years ago and I haven't heard of one yet. It is discussed quite a bit in Joan Matthews Larson Depression Free, Naturally, but again, I lost my copy and can't remember the detail into which it goes.

Thanks for all your input~

Cara

halsgluten
06-27-2007, 01:28 AM
Cara,

Is there any history of itching ears, athelete's foot fungus, toenail fungus, or kidney stones?

Hal

jcc
06-27-2007, 03:15 AM
No, not that I know of. Now my husband and his father, yes to bad toenails and foot fungus.

Cara

wwebby
08-24-2007, 08:32 PM
Add me to the list of folks with....

Pyroluria
Gluten Sensitivity
Hashimoto's Thyroiditis
Bipolar Disorder

I wish I knew what caused what so I could get to the root of the problem(s)!

Ealmeida
01-29-2010, 03:10 PM
Hi,

Thanks for posting this. I stumbled across researching pyroluria a few weeks ago when my lab tests came back low in b6. I seem to have a lot of the classic symptoms that go along with it. How can I find a doctor that will test me for it? I have Kaiser and they won't do the test even if I pay for it out of pocket. It's so frustrating. One dead end after another.

Thanks,
Ellen

Hi!

I'm one of a few with personal interest in this since my daughter tested positive for pyroluria.

I've had a few discussion with others about the gluten/casein sensitivity association. Information about pyroluria is not widely available or great in amount. Joan Mathews Larson book Depression Free Naturally talks about both Pyroluria and also about gluten/casein sensitivity. I'm not sure (can't remember, and I loaned the book out and it was never returned) if she draws direct connections, or just talks about them individually... in how they may be involved in mental health issues, including depression, bipolar, alcoholism, schizophrenia.

My thinking is that they just often go together~ I'm not sure what CAUSES what. I've tried to ask the same question, but didn't get too far. I think oxidative stress might be a connector.

I'll try to gather up a few odds and ends to connect a few dots. Not that I can answer your question, because I don't have an answer... but maybe you can make a few more connections.

Here are links to two articles about pyroluria, that at least mention oxidative stress~
Pyroluria: Hidden Cause of Schizophrenia, Bipolar, Depression, and Anxiety Symptoms (http://www.alternativementalhealth.com/articles/pyroluria.htm) by Woody McGinnis, M.D.
Commentary on Nutritional Treatment of Mental Disorders: Pyrrole Disorder (http://www.alternativementalhealth.com/articles/walshMP.htm#Py) by Willam Walsh, Ph.D.

From the McGinnis article~




I've talked with two integrative medicine doctors about pyroluria. One is Dr. Woody McGinnis, via email. The other is Dr. Hicks, also an integrative medicine doctor. Both of these doctors recommended IgG food allergy testing, and removing any foods one tested positive for. It just happens gluten and casein sensitivity are top offenders and worst offenders when it comes to immune system issues and neurological associations. They both recommended my daughter remove these foods if she showed IgG antibodies to them.

Dr. McGinnis seemed much more of the opinion that Pyroluria is a primary condition/factor, that the pyroluria comes first.

Dr. Hicks said the postitive test for pyroluria was meaningful, but his view was it was just one of many things going wrong, and the primary problem for my daughter was an immune system problem. He rather downplayed the pyroluria, I thought.

Dr. McGinnis is one of the authorities on it, though. I was hearing for a while there was going to be a book coming out on it, but haven't heard of one yet. ANd of course, our 'regular' doctors dismiss it altogether, saying it is VERY CONTROVERSIAL.

To connect oxidative stress to gluten/casein sensitivity, from William Walsh's narrative on oxidative stress (not in direct reference to pyroluria):
http://www.alternativementalhealth.com/articles/walshMP.htm#Ox



I'd love to know more about your symptoms of pyroluria if you feel alright about discussing it. For my daughter, I'd say the most worrisome symptoms were depression, anxiety, and mood swings.


Cara

Naominjw
01-29-2010, 03:58 PM
My younger daughter is one of these gluten-sensitive kids with bad intestinal malabsorption and diagnosed with childhood-onset schizoaffective. We did have her tested for pyroluria and it came back negative. She no longer has symptoms of her schizoaffective. Although she did not have pyroluria, she did have other treatmable conditions. I do believe there can be a cascade of things going wrong, and we don't always get to figure out which initially caused which. after all, some of the triggers could be epigentic, happening even before birth.

northernlights
01-30-2010, 09:18 AM
Right now KPU is a hot theme at the lyme forums like lymenet. It is quite new in the U.S. The germans and dutch have been into HPU or KPU for a long time. It is not mainstream anywhere.

Zonulin
01-30-2010, 03:27 PM
This site has some info re the testing for pyroluria: http://www.foodforthebrain.org/content.asp?id_Content=1638

Possibly one of the most significant ‘undiscovered’ discoveries in the nutritional treatment of mental illness is that many mentally ill people are deficient in vitamin B6 and zinc. But this deficiency is no ordinary deficiency: you can't correct it by simply eating more foods that are rich in zinc and B6. It is connected with the abnormal production of a group of chemicals called ‘pyrroles’. A person with a high level of pyrroles in the urine needs more B6 and zinc than usual, since they rob the body of these essential nutrients, increasing a person’s requirements to stay healthy. More than 50 per cent of people diagnosed with schizophrenia have ‘pyroluria’.

The test for pyroluria is remarkably simple and very inexpensive. When you add a chemical known as Erhlich’s reagant to urine, it will turn mauve if there are krytpopyrroles present. Dubbed ‘mauve factor’ in the 1960s, this was found in 11 per cent of normal people, 24 per cent of disturbed children, 42 per cent of psychiatric patients and 52 per cent of schizophrenics25. Dr Carl Pfeiffer and Dr Arthur Sohler at Princeton’s Brain Bio Center worked out that these abnormal chemicals would bind to B6 and zinc, inducing deficiency. With this knowledge, effective therapy was at hand. Since 1971, thanks to Dr Pfeiffer’s pioneering work, thousands of pyroluric patients have been successfully treated with B6 and zinc, both at the Brain Bio Center and more recently at the Institute for Optimum Nutrition in London.

The Signs and Symptoms of Pyroluria: Pyroluria is often a stress-related condition, with symptoms usually beginning in the teenage years after a stressful event such as exams or the split-up of a relationship. Those with pyroluria often become reclusive and socially withdrawn, depending on the family and avoiding any stressful situations.

Pyrolurics often have weak immune systems and may suffer from frequent ear infections as a child, colds, fevers and chills. Other symptoms include fatigue, nervous exhaustion, insomnia, poor memory, hyperactivity, seizures, poor learning ability, confusion, an inability to think clearly, depression and mood swings. In girls there can be irregular periods and in boys relative impotence. The pyroluric patient can have bad breath and a strange body odour, a poor tolerance of alcohol or drugs, may wake up with nausea, and have cold hands and feet and abdominal pain.

A lack of dream recall is very common. It is normal to remember dreams, and many people, whether or not they have mental health problems, report better dream recall once they start supplementing optimal amounts of vitamin B6 and zinc. Other tell-tale signs include pale skin, white marks on the nails and, in extreme cases, poor hair growth and loss of hair colour. Often a person with pyroluria also has skin problems such as acne or eczema.

Not all these symptoms are present in all pyrolurics, but if you are experiencing a number of them, it is well worth testing for. A simple urine test measures the level of kryptopyrroles in the urine, which should not be above 0.08 units.
Many of these symptoms are now recognised as classic signs of zinc deficiency, but this possibility is rarely tested for or corrected with zinc supplements. It amounts to a tremendous oversight within psychiatry: zinc is, after all, probably the most commonly deficient mineral. The average intake in Britain less than a day, while the RDA is 15mg, so almost half the population gets less than half the RDA of zinc. Seeds, nuts, meat, fish and wholefoods are all rich in it.

There's more to the story, however. People with pyroluria often come from families with a history of mental health problems. Dr Pfeiffer also noted that it was more common in all-girl families. Although nothing is proven at this stage, it is likely that pyroluria is a genetic predisposition that makes an individual need more vitamin B6 and zinc to feel well. Like so many imbalances discussed in this book, it illustrates how we are all biochemically unique and need to discover our own optimum nutrition to stay healthy and mentally well.

For people with pyroluria, this means both eating a healthy diet and supplementing relatively large amounts of zinc, starting with 25mg and going up to 50mg a day, as well as vitamin B6, starting at 100mg and going up to 500mg. Those with pyroluria seem to do better on relatively low protein diets, or, at least, not high protein diets. Some pyroluric patients react badly to high protein foods such as meat. This may be because you need adequate amounts of B6 and zinc to digest, absorb and use protein.

I attended a lecture by Dr. William Walsh a couple of years ago, and he provided a lot of info about pyroluria - he also told us there must be a proper ratio in the levels of copper/zinc (a blood test can confirm whether there is a proper balance - should look for elevated serum copper and depressed plasma zinc), and that many people are struggling with maintaining adequate zinc levels, since there is 4 times the amount of copper in our water today than there was in 1992. Metallothionein proteins are responsible for maintaining the copper/zinc ratio in the blood - that is another blood test which could be done - inadequate metallothionein in the blood may be causing an unhealthy copper/zinc ratio.
And I can't resist adding this part:

CHECK FOR ALLERGY
Some people with mental health problems are sensitive to gluten, especially wheat gluten, which can bring on all sorts of symptoms of mental illness. This has been known since the 1950s, when Dr Lauretta Bender noted that schizophrenic children were extraordinarily subject to coeliac disease (severe gluten allergy)26. By 1966 she had recorded 20 such cases from among around 2,000 schizophrenic children. In 1961 Drs Graff and Handford published data showing that four out of 37 adult male schizophrenics admitted to the University of Pennsylvania Hospital in Philadelphia had a history of coeliac disease in childhood27.

Side effects? None reported. :D

These early observations greatly interested Dr Curtis Dohan at the University of Pennsylvania. He suspected that the two were linked and decided to test his theory by randomly placed all men admitted to a locked psychiatric ward in a Veterans Administration Hospital in Coatsville, Pennsylvania, either on a diet containing no milk or cereals, or on one that was relatively high in cereals. (Milk was eliminated from the diet because some people do not benefit when only glutens are removed.) All other treatment continued as normal. Midway through the experiment, 62 per cent of the group on no milk and cereals were released to a ‘full privileges’ ward. Only 36 per cent of those patients receiving a diet including cereal were able to leave the locked ward. When the wheat gluten was secretly placed back into the diet, the improved patients once again relapsed28.

These results have since been confirmed by other double-blind placebo-controlled trials. In one, published in the Journal of Biological Psychiatry, 30 patients suffering from anxiety, depression, confusion or difficulty in concentration were tested, using a placebo-controlled trial, as to whether individual food allergies could really produce mental symptoms in these individuals. The results showed that allergies alone, not placebos, were able to produce the following symptoms: severe depression, nervousness, feeling of anger without a particular object, loss of motivation and severe mental blankness. The foods/chemicals that produced most severe mental reactions were wheat, milk, cane sugar, tobacco smoke and eggs29.

Ellen - you may be able to have a naturopath order the simple urine test for kryptopyrroles for you - still would be out of pocket. But once the test comes back positive, you may be able to negotiate reimbursement from the jerks at Kaiser Permanente.

Karen

Seeker
01-30-2010, 06:49 PM
Thanks for the insight. That is, the idea that pyroluria might actually be a causal factor for gluten intolerance, rather than the other way around. Retaking the gluten sensitivity test after I've been on the pyroluria treatment for about a year should provide an answer. I hope it is the case that pyroluria can cause food sensitivity, because staying 100.00% squeaky clean of gluten is a giant HASSLE!

Curious, what gluten sensitivity test are you talking about?

Thanks

jcc
01-31-2010, 04:39 PM
Hi,

Thanks for posting this. I stumbled across researching pyroluria a few weeks ago when my lab tests came back low in b6. I seem to have a lot of the classic symptoms that go along with it. How can I find a doctor that will test me for it? I have Kaiser and they won't do the test even if I pay for it out of pocket. It's so frustrating. One dead end after another.

Thanks,
Ellen

Ellen,

You can order this test without a doctors script, although you will likely pay out of pocket. When I ordered it years ago, it was around $60.

You can find labs on the right bar of this page:
http://jccglutenfree.googlepages.com/pyroluria

We used BioCenter Lab:
http://www.biocenterlab.org/Merchant2/merchant.mvc?Screen=SFNT&Store_Code=bcl

If you do the testing and it is positive, then you can begin to search for help in treating it. I was able to get a lot of guidance via the Internet. If you get a positive result... and need help from there... please send me a private message or email and I can pass along some contact info.

Cara

northernlights
01-31-2010, 05:21 PM
I know from the german forums that one must totally avoid any extra b-6 or zinc for a week, or was it two, before the test, or it may be negative.

The germans say there are several different types of kryptopyrroluria, those are roughly when you are born with it, another type is only under stress, it is intermittent.

Some websites: http://www.hputest.nl/english.htm
http://hpu-info.gmxhome.de/
http://www.wellsphere.com/chronic-fatigue-syndrome-article/kryptopyrrole-hpu-hpl-porphyria-b6-zinc/603727
http://www.healthyawareness.com/articles/about-autism/pyrroluria-hemopyrrollactam-uria-hpu.aspx

Ealmeida
02-06-2010, 11:26 PM
Thanks so much for the responses to my questions about pyroluria. The more I read on about this, it seems that there is also a connection with too much copper build up in the body. Any more information you might have would be much appreciated!

jcc
02-06-2010, 11:58 PM
copper and zinc need to be balanced... and when one is high the other becomes low.

if zinc is too low, then copper becomes high, and if zinc gets too high, then copper gets too low.

The doctor who was helping treat our daughter didn't want her to have a SPECK of copper... not even a little bit in a multivitamin. But, that is why it needs to be watched, because if you over supplement zinc you could end up with a copper deficiency.

I was told you want a copper to zinc ratio between .7 - 1.0.

When my daughter was tested, neither copper or zinc were out of normal range but her copper to zinc ratio was 1.65 meaning her copper was high and zinc low... relative to each other.

loveandlight1111
02-26-2010, 09:24 PM
Hi Everyone, Looks like its been a long time since anyone wrote here. Many of us with lyme desease are showing positive for KPU Pyrroluria. Just want to see if anyone is here before I write more.

annelb
02-27-2010, 10:53 AM
We are here even though the forum is a little slow. Would love to hear more. I hope you take the time to post. I hope you are doing well.
Anne

jcc
02-27-2010, 01:50 PM
Hi Everyone, Looks like its been a long time since anyone wrote here. Many of us with lyme desease are showing positive for KPU Pyrroluria. Just want to see if anyone is here before I write more.

I would love to know more as well. My daughter has tested positive for pyroluria, so I am always interested in hearing more.

And... this relationship between gluten sensitivity, lyme disease, and pyroluria has to have greater meaning. I'm well aware of an increased associated between gluten sensitvity and pyroluria, and gluten sensitivity and lyme disease... so this brings it full circle!

What comes first? Or does it all just go together.

How many of these people are IgA deficient? My daughter is. Not completely IgA deficient, but below range IgA. I'm just really always wondering does one of these cause the other, or do they all just go together.

I have heard from some who say a gluten free/casein free diet resolved their "pyroluria". Unfortunately, my daughter has not signed on to a gf/cf diet. I've also heard from some whose IgA levels rise after gf/cf diet.

I just wish we had some real explanations on all of this!