Pyroluria Question for Adult Male with 81 result

[JuneStar]

Hi! I'm new here.
I am looking for members with experience in dealing with such a high result. Our son has a tic disorder and was treated at Pfeiffer Center this past summer. His kryptopyrrole levels were borderline.
My husband has been dealing with a lot of stress with work and of course with our son's initial symptoms and diagnosis prior to treatment. He has become depressed although he originally didn't recognize the symptoms-- workahaulism, insomnia, irritability, inability to make important decisions in business and family life-- a sort of paralysis, if you will.
I convinced him to take the kryptopyrrole test and he finally consented. I think we were both shocked at the results. He has suffered tremendous hair loss all over his head since our son's initial symptoms last year. He has dark circles under his eyes.
Our son was also tested with Alcat and found to be allergic to wheat and corn among other things. Our house is food color, preservative, additive free, gluten and corn free, and we follow (loosely) the Feingold diet (sometimes we use salicilates-- with so many other restrictions it is nice to add a bit of organic ketchup or pasta sauce to a meal).
I will admit that my husband secretly binges on Dunkin Donuts, coffee, chocolate, and eats food with wheat when he is out and away from the house.
He is resistant to seek medical help for "mental" disorders. I have gotten him to agree to visit our regular M.D. and have his heart/cortisol levels checked. I have begun giving him 80mg of zinc with Borage oil, Vit. E, and B6. I read about loading up, but I am not sure what this means, entails. I have read that there is a simple test you can purchase at the health food store that will read whether your zinc levels are too low. I will investigate.
Right now I am looking to giving him a 'safe' dosage of vits that may show him some positive results and maybe convince him that a trip to an orthomolecular doc is a good idea. He is a doubting Thomas.
Since our son is wheat intolerant (not celiac) and he and my husband are of Irish decent, is it possible that we are dealing with a genetic celiac issue here? My husband's sister has an autoimmune skin disorder, and his other sister has symptoms of pyroluria IMO.
Is there a simple, non-invasive test that we could do (fairly cheap) to determine if his problem is a wheat related issue? I doubt he would go gluten free without a proper test. He loves his bread, biscuits, and donuts.
BTW my husband is average height, weight 175 pounds, and he is athletic. (Conversely, suffering from muscular aches and pains, multiple knots in back muscles chronically over last few years).
Any info would be greatly appreciated.
Thanks,
JuneStar

[annelb]

There is some collected information on pyloria on The Gluten File http://jccglutenfree.googlepages.com/ The link is near the bottom of the page.

The Gluten File will also give you informaiton on testing for gluten sensitivity/celiac disease.

There is also a Gluten Sensitivity/Celiac Disease forum here on BT

Anne

[jcc]

If you contact me via email or pm through BrainTalk, I have some information I could send you via email regarding appropriate treatment ~ I also have a contact email listed in The Gluten File where you can reach me.

My daughter tested positive with a result of 39. I can share with you what we've done for her.

Good idea to be asking about gluten sensitivity and celiac disease! Yes, you want to run those tests!
Diagnostic Testing (http://jccglutenfree.googlepages.com/diagnostictesting)


Cara

[orthomolecular]

Yes, I recommend buying Zinc Status and using it from time to see if your levels are good. It can take some time to correct a life long deficiency. And the Zinc Status can help you realize that because it may take months, even years to correct all of those deficiencies.

There is usually a loading phase in the beginning where you are taking higher doses than you need to until your tissues saturated. After the loading phase you lower the dose to a maintenence level. But this doesn't necessarily pretain to all of the supplements. But there can be some adjustments to be made in the dosing from time to time. Sometimes you have to adjust one nutrient because you added another, or because you stopped another. Everything is related, so if you change one thing you may have to make adjustments again as a result.

I think taking about 60 mg. of zinc as a starting dose should be fine. I think that was something like the dose I started with. I think zinc is like many nutrients in that you may know if you take too much because you may throw up at some point. That is usually a good indication that you need to adjust something. So, I took about 180 mg. of zinc per day in the beginning, 60 mg. with each meal. I think if he really has a zinc deficiency that dose should not be a problem. If it is then he may not have a zinc deficiency (without the pyrrole test), or he may be missing something else and that is the problem.

Of course with all that zinc he can develop a copper deficiency. This is how it gets complicated. All minerals must be balanced. And a dose that is about 60 or 80 mg. will induce a copper deficiency. I would suggest maybe starting with the zinc and then experiment with a 2 mcg. copper dose at some point, maybe a few weeks after you start the zinc (so he can get his zinc levels up). But don't forget the copper.

Making adjustments is another thing. I think your husband may need to make adjustments every so often in the beginning to increase the dose. You should not make big increases, something like 25% more when you do increase the dose. And take that dose for several weeks before adjusting that again. Orthomolecular is mega-doses, treating nutritional dependencies, so the doses can be high, especially if you are older. Younger people, I think, may need lower doses overall.

For example, I remember that I started with the 500 mg. dose of b6. I took that twice a day for some time (not at night though because it can disturb sleep). But evenually I was taking 2,000 mg. of b6 every day and still do. Of course the other form of b6 is critical too. So start with the p-5-p form in one 50 mg. as a dose.

I also found it was helpful to be consistent with when I ate my meals and took my supplements. For some reason lunch was more important than other meal. But I would develop some symptoms when I ate my lunch late. (It might have to do with the fact that lunch is in the middle of the day and this only happened for me at work and not on the weekends.)

I would also notice that my urine would turn red if it was left to oxidize. This may be a handy self test that your husband might try also from time to time if he wants to get a sense of his progress. I think when my levels of all nutrients were good my urine would not turn red when exposed to light. But there were times when I was really stressed out and taking all my supplements (with good levels and saturated tissues) and my urine would turn red. So I think this may be helpful to see how your body will increase pyrrole production and that can mean that the doses need to be adjusted during those stressful times.

The first doctor I went to (Dr. Braverman) did not do that (pyrrole) test on me. I have never had that test done. But I had enough symptoms to know that I had this condition.

If you have any questions (for me) you can PM or just post them here.

[JuneStar]

I just want to say thanks to everyone. You have really helped us to gain a bit of insight and we will be implementing some changes based on what you have suggested. We have a celiac screening scheduled for next week as well as a doc appointment. I will let you all know how that goes.
Thanks again,
JuneStar

[annelb]

Please remember that screening for celiac disease does not meant that gluten is not playing a part. Non-celiac gluten sensitivity is poorly studied but is thought, by some physicians, to affect 10-30% of the population. Getting tested for CD is a good idea to be sure one does not have overt CD. But if the tests are negative do not throw out the idea that gluten may be causing problems.

Wish you well,
Anne

[jcc]

JuneStar~ any results from that celiac screening? How are things going with the supplements?

Cara

[JuneStar]

Hi Everybody,
Our test results came back negative for CD. The result was 0.5 with 4.0 needed to dx. My husband is not eating gluten free but has been taking the full dose of vits and mins for a little over 2 weeks. (Until that point it was touch and go--a lot of questions and doubts surfacing). He has been to general practitioner and had thyroid checked, hernia, diabetes, full CBC. Everything came back good. That is a relief.
Right now he is taking 100 mg of zinc and 1000 mg P5P with a multi, vit E, borage oil, vit C, and magnesium. He is finally dreaming every night and sleeping much better. His mood is better and he is more his old self (IMO). He would say there is no changes. Tonight he complained of feeling nauseous for the first time, so I think we should scale back on the zinc. We did get zinc status and up until today he said he couldn't taste it.
A lot of work related stresses have recently disappeared so I also wonder if that too has lessened the pyrrole activity? We will scale down and adjust the doses for tomorrow.
Let me know if you have any sage advice for us. Thanks.
JuneStar

[markpilnick]

I've read two of Carl Pfieffer's books and a paper that's on the Web on the topics of zinc and manganese. Zinc will deplete manganese so you need to take about 10 mg of the gluconate or amino acid chelate but...ah, the but...there seems to be a subclass of people with allergies, that get worse on zinc, methionine and calcium because they have a low manganese level so Dr. Pfieffer had one patient slowly titrate manganese until he was up to 300 mg p/day, resulting in reduction of allergies and ability to better tolerate protein. That man sounded like me so I'm now just taking manganese and B6(25mg)along with other supplements, but no zinc, getting it instead from my diet. Manganese takes a long time to build up so I'll give you updates.

Mark/rapid cycling bipolar and Tourette Syndrome

[mrsdoubtfyre]

Please read this monograph:

http://lpi.oregonstate.edu/infocenter/minerals/manganese/index.html

300mg of manganese is not a safe thing to do IMO.

Increased zinc intake does affect copper in some people.
This can be measured with a blood test.