Re: Gas/WD/milk/sleeping-was Chris - now Heidi

[Guest guest]

I'm not sure where B6 fits into all this: obviously

> if the gliadin was broken down properly in the stomach

> it wouldn't make it to the small intestine, but it seems that

> few people have the correct enzymes to break it down,

> humans just weren't designed to eat wheat.

I had a feeling you were going to respond to this one ;-) I've got a

virtually unknown, genetic hemoglobin disorder called pyroluria that

results in severe deficiencies in zinc and B6. About eight weeks ago

my zinc levels were very close to zero and B6 couldn't have been much

higher. To get relief of most symptoms, I have to take 700 mg of B6

daily which is 35,000 times the RDA. Zinc is needed to make HCl and

B6 is needed to make protein enzyme(s), so Zn and B6 deficiencies

will often look like food allergies. It's possible that I could have

a gluten allergy in addition to a Zn/B6 deficiency, but I'm beginning

to doubt it based on the fact that many of my symptoms that are

similar to gluten intolerance disappeared when I started taking B6

and Zn, despite eating lots of gluten.

For example, I sleep through the night almost every night when

previously I had unbelievably bad sleep problems and no dreams. My

skin is becoming soft and smooth when just a week ago it was dry,

insanely itchy, and looked like reptile skin. Also, I've had a life-

long skin condition called keratosis pilaris, which hasn't been bad

in the last few weeks and it is normally really bad in the winter.

My mood has been very even, I've been handling stress well (as long

as I remember to take my B6), and I've felt happy most of the time

despite it being winter and finding out that my mom has 6-12 months

to live. My morning nausea has disappeared. I've been plagued my

whole life with nervousness/anxieties over the most ridiculous

things, and this has almost disappeared. For example, at work we

have company-wide monthly meetings to review financials for the

previous month. We've been extremely profitable for the last several

years so these meetings are very pleasant. Nevertheless, I would

always get really nervous to the point I'd even shake sometimes

before, during, and after the meeting. Not only have I not done

that, I been completely relaxed before, and during all meetings I've

attended, even when I've been in the hot seat.

I've been on a B6/Zn regiment for about eight weeks now and have

eaten gluten, corn, eggs, cheese, yogurt, and kefir consistently

through all eight weeks.

When I get to the end of the undereating phase of the WD, my stomach

is completely flat. After eating a small amount of something with

protein either a salad with cheese and nuts, or a cup of broth, my

stomach swells up and I look pregnant. This doesn't happen when I

drink an even a greater amount of water. By the end of the meal, I

usually have other digestive ailments depending on how much meat and

hard to digest proteins I ate. The bloating will gradually subside

and by lunchtime the next day is almost gone.

So this combination of phenomena and my family history makes me

believe that my main problems are lack of protein enzymes and HCl,

and undigested protein, all resulting from my B6/Zn deficiency,

rather than an allergy. Although, it is possible there could also be

an allergy tied into this, too. In the meantime, I am planning to

avoid gluten, casein, corn protein, beans, while my digestive system

heals and I figure out how to digest broth and meat.

Incidentally, it was your gluten information that led me to discover

pyroluria and eventually be tested for it. Your descriptions of

gluten intolerance and suggestion to someone of a meat and vegetable

only diet made me suspect that I could be gluten-intolerant. The

meat and veggie diet actually exacerbated my symptoms which made me

realize that I was severely zinc and B6 deficient.

Cara

[Guest guest]

Pyroluria is really not unknown. In fact Carl Pfieffer MD, PHd, has

been treating it with zinc and B-6 since the 70's. Try a search with

Carl Pfieffer pyroluria and you will find a lot of articles and a

link to the center he founded which is now in Illinois.

I have been researching this chemical imbalance, pylouria, because I

have a brother with severe mental illness. Personally I have suffered

with inner tension, allergies and leaky gut. It has only been

recently I have finally found some of the answers to these problems.

I am going to talk to my doctor about getting the mauve test.

It is great to hear you are improving and that you found someone who

recognized pyroluria and could help you.

How much zinc do you take and in what form, capsule, liquid?

All my best,

Sheila

> I'm not sure where B6 fits into all this: obviously

> > if the gliadin was broken down properly in the stomach

> > it wouldn't make it to the small intestine, but it seems that

> > few people have the correct enzymes to break it down,

> > humans just weren't designed to eat wheat.

>

> I had a feeling you were going to respond to this one ;-) I've got

a

> virtually unknown, genetic hemoglobin disorder called pyroluria

that

> results in severe deficiencies in zinc and B6. About eight weeks

ago

> my zinc levels were very close to zero and B6 couldn't have been

much

> higher. To get relief of most symptoms, I have to take 700 mg of

B6

> daily which is 35,000 times the RDA. Zinc is needed to make HCl

and

> B6 is needed to make protein enzyme(s), so Zn and B6 deficiencies

> will often look like food allergies. It's possible that I could

have

> a gluten allergy in addition to a Zn/B6 deficiency, but I'm

beginning

> to doubt it based on the fact that many of my symptoms that are

> similar to gluten intolerance disappeared when I started taking B6

> and Zn, despite eating lots of gluten.

>

> For example, I sleep through the night almost every night when

> previously I had unbelievably bad sleep problems and no dreams. My

> skin is becoming soft and smooth when just a week ago it was dry,

> insanely itchy, and looked like reptile skin. Also, I've had a

life-

> long skin condition called keratosis pilaris, which hasn't been bad

> in the last few weeks and it is normally really bad in the winter.

> My mood has been very even, I've been handling stress well (as long

> as I remember to take my B6), and I've felt happy most of the time

> despite it being winter and finding out that my mom has 6-12 months

> to live. My morning nausea has disappeared. I've been plagued my

> whole life with nervousness/anxieties over the most ridiculous

> things, and this has almost disappeared. For example, at work we

> have company-wide monthly meetings to review financials for the

> previous month. We've been extremely profitable for the last

several

> years so these meetings are very pleasant. Nevertheless, I would

> always get really nervous to the point I'd even shake sometimes

> before, during, and after the meeting. Not only have I not done

> that, I been completely relaxed before, and during all meetings

I've

> attended, even when I've been in the hot seat.

>

> I've been on a B6/Zn regiment for about eight weeks now and have

> eaten gluten, corn, eggs, cheese, yogurt, and kefir consistently

> through all eight weeks.

>

> When I get to the end of the undereating phase of the WD, my

stomach

> is completely flat. After eating a small amount of something with

> protein either a salad with cheese and nuts, or a cup of broth, my

> stomach swells up and I look pregnant. This doesn't happen when I

> drink an even a greater amount of water. By the end of the meal, I

> usually have other digestive ailments depending on how much meat

and

> hard to digest proteins I ate. The bloating will gradually subside

> and by lunchtime the next day is almost gone.

>

> So this combination of phenomena and my family history makes me

> believe that my main problems are lack of protein enzymes and HCl,

> and undigested protein, all resulting from my B6/Zn deficiency,

> rather than an allergy. Although, it is possible there could also

be

> an allergy tied into this, too. In the meantime, I am planning to

> avoid gluten, casein, corn protein, beans, while my digestive

system

> heals and I figure out how to digest broth and meat.

>

> Incidentally, it was your gluten information that led me to

discover

> pyroluria and eventually be tested for it. Your descriptions of

> gluten intolerance and suggestion to someone of a meat and

vegetable

> only diet made me suspect that I could be gluten-intolerant. The

> meat and veggie diet actually exacerbated my symptoms which made me

> realize that I was severely zinc and B6 deficient.

>

> Cara

[Guest guest]

Have you started taking the enzymes? If so, are they helping?

>

> -- Heidi

I've tried Omegazyme from GOL and whatever brand Radiant Life sells.

Neither made any noticable difference over a several week period.

I'm beginning to think that they don't have enough of the protein

enzymes for me. I'm looking for something with more protein enzymes

but haven't found anything. I tried Thorne Research HCl, but that

was an experience I'd rather not repeat and I'm not sure what to do

about the HCl.

Cara

[Guest guest]

> Pyroluria is really not unknown. In fact Carl Pfieffer MD, PHd, has

> been treating it with zinc and B-6 since the 70's. Try a search

with

> Carl Pfieffer pyroluria and you will find a lot of articles and a

> link to the center he founded which is now in Illinois.

> I have been researching this chemical imbalance, pylouria, because

I

> have a brother with severe mental illness. Personally I have

suffered

> with inner tension, allergies and leaky gut. It has only been

> recently I have finally found some of the answers to these

problems.

> I am going to talk to my doctor about getting the mauve test.

> It is great to hear you are improving and that you found someone

who

> recognized pyroluria and could help you.

> How much zinc do you take and in what form, capsule, liquid?

> All my best,

> Sheila

Well, pyroluria was unknown to me and everyone in my family who has

it and everyone who knew me because the symptoms are so easily

identifible once you know what to look for. I'm familiar with

Pfieffer and have his book. I'm following Joan Larson's protocol

that she describes in her book and uses at the Health Recovery

Center. I've been taking 90mg of zinc tablets, picolinate form. I'm

currently looking for a more additive free supplement since this is

something I'll have to take the rest of my life.

Cara

[Guest guest]

Hi Cara,

May I suggest you look into using at Zinc Drink, a liquid form of

zinc. One of the unique things about it is when you need more zinc

you can not taste it, but when your level of zinc rises you begin to

taste it, so you can tell when you have reached the maxium amount

needed.

I have found a fine enzyme to take for digestion of proteins and

starches is freeze dried papaya tablets from Green Papaya. It can be

purchased from Enzymes International, Inc. I have no financial

interest in either of these products.

I do know of someone who has sucessfully used the Zinc Drink. She

buys it by the case. I have used the papaya enzymes myself. You may

need other enyzmes too, but I'm sure this is something you could

discuss with Joan Larson, if you choose to do so.

It sounds like we are both experimenting to find out what works best

for each of us. We are on the road to recovery. Bravo!

Sheila

-- In , " lakeconwayhills "

<lakeconwayhills@y...> wrote:

>

> > Pyroluria is really not unknown. In fact Carl Pfieffer MD, PHd,

has

> > been treating it with zinc and B-6 since the 70's. Try a search

> with

> > Carl Pfieffer pyroluria and you will find a lot of articles and a

> > link to the center he founded which is now in Illinois.

> > I have been researching this chemical imbalance, pylouria,

because

> I

> > have a brother with severe mental illness. Personally I have

> suffered

> > with inner tension, allergies and leaky gut. It has only been

> > recently I have finally found some of the answers to these

> problems.

> > I am going to talk to my doctor about getting the mauve test.

> > It is great to hear you are improving and that you found someone

> who

> > recognized pyroluria and could help you.

> > How much zinc do you take and in what form, capsule, liquid?

> > All my best,

> > Sheila

>

> Well, pyroluria was unknown to me and everyone in my family who has

> it and everyone who knew me because the symptoms are so easily

> identifible once you know what to look for. I'm familiar with

> Pfieffer and have his book. I'm following Joan Larson's protocol

> that she describes in her book and uses at the Health Recovery

> Center. I've been taking 90mg of zinc tablets, picolinate form.

I'm

> currently looking for a more additive free supplement since this is

> something I'll have to take the rest of my life.

> Cara