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Old 06-11-2007, 06:44 PM
era era is offline
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Default gluten-pyroluria causal link?

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.
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Old 06-11-2007, 08:19 PM
jcc jcc is offline
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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 by Woody McGinnis, M.D.
Commentary on Nutritional Treatment of Mental Disorders: Pyrrole Disorder by Willam Walsh, Ph.D.

From the McGinnis article~

Quote:
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.c...walshMP.htm#Ox
Quote:

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
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Last edited by jcc; 06-11-2007 at 11:47 PM.
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Old 06-11-2007, 10:50 PM
era era is offline
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Default Re: gluten-pyroluria causal link?

Quote:
Originally Posted by jcc View Post
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!
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Old 06-11-2007, 11:42 PM
jcc jcc is offline
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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
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Old 06-12-2007, 11:12 PM
era era is offline
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Default Re: gluten-pyroluria causal link?

Quote:
Originally Posted by jcc View Post
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
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Old 06-14-2007, 06:20 AM
northernlights northernlights is offline
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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...light=pyrol%2A


http://www.ht-mb.de/forum/showthread...light=pyrol%2A

nora
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Old 06-14-2007, 06:42 AM
glenntaj glenntaj is offline
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Default There is a big thread aboutone person's experience--

--with pyroluria at the Braintalk Vitamin forum:

http://brain.hastypastry.net/forums/...ead.php?t=1932
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Old 06-20-2007, 08:38 PM
jcc jcc is offline
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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
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Old 06-20-2007, 08:40 PM
jcc jcc is offline
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Quote:
Originally Posted by northernlights View Post
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...light=pyrol%2A


http://www.ht-mb.de/forum/showthread...light=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
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Old 06-20-2007, 09:04 PM
annelb annelb is offline
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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
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