Help Pyroluria

[brskac]

My pyroluria test came back as 16, a borderline pyroluric. My sons pyroluria test came back as a 28 with Bio-Labs, so he has pyroluria. He does not have tics, but he has symptoms of ADHD, although he does well in his school work, he has impulse control problems, and behavioral issues. I wanted to post here (I hope you don't mind) because this forum is more knowledgeable about pyroluria. I can't find any topics on pyroluria in the ADHD forum. It is so hard to find information, it is not very well known.

 

I have been taking p5p, b6 and zinc with great results. I used to have CFS, aching joints, and severe depression but I no longer have these symptoms since taking the supplements.

 

My son started to take yummi bears vitamins "Child Bright" a couple of months ago. It is a supplement to increase attention span which includes p5p b6 and zinc. The first month he did great on them, but he has hit a plateau.

 

The supplemental facts on the bottle says exactly "Vitamin B-6(As Pyridoxal-5-Phosphate & HCl) 40 mg. I can't tell how much p5p there is in relation to the B-6(isn't HCl considered B-6?).

 

Now that we have gotten the results back from Bio-Lab I now know he needs a higher dose. I have been previously reluctant to give him a higher dose although I knew he hit plateau.

 

I want my son to have as normal as a life as he can. I have seen how horrible life can be with pyroluria (and I am borderline). My grandmother had schizophrenia...and it kills me to know she could have been treated very easily had this been known back then. I refuse to let this affect another generation.

 

I received the results in the mail on Friday night and I thought Bio-Labs would give a treatment protocol with the results. I remember hearing that somewhere. Has anyone heard this? I am going to call tomorrow to know for sure.

 

I would like to work with my sons physician on this. Does anyone work with their physician (MD) on treating pyroluria? If the physician is willing to work with us, would he be able to consult with the Pfeiffer Treatment Center? I want this to be done with no more guesswork and under a physicians guidance.

 

If anyone can give me information or advice it would be very much appreciated

 

Thank you so much

[Chemar]

welcome brskac

 

I have not dealt with pyroluria as my son was negative, but others have and I am sure they will comment as soon as they see your post.

 

 

and yes, finding a good doctor who knows about pyroluria would be of great benefit.

 

good to see that you have been so proactive in helping yourself and your child on this.

[Caryn]

I would like to work with my sons physician on this. Does anyone work with their physician (MD) on treating pyroluria? If the physician is willing to work with us, would he be able to consult with the Pfeiffer Treatment Center? I want this to be done with no more guesswork and under a physicians guidance.

 

If anyone can give me information or advice it would be very much appreciated

 

Thank you so much

Brskac,

I know Pfeiffer Treatment Center sells Primer for Pyroluria over the counter and I am not sure you need a prescription. You can call the pharmacy to ask. Anyway, they would be glad to fill it with a script from your physician. Shipping from Illinois is about 9 bucks continental u.s. and the cost of the vitamins are roughly $40 for I believe a two month supply (don't quote me on that!). the phone number at Pfeiffer is 1-630-505-0300. Borderline and "average" levels of pyroluria would probably get treated fine with the Primer (they sell an adult and a child version). High mauve needs more analysis and a compounded vitamin, or at least more monitoring because doses need to be very high and considered toxic for normal non-mauve people. You can buy a product at Whole foods called zinc status. It can help you to determine if you or your son are deficient in zinc. Zinc toxicity is something to be concerned about so don't take high doses of zinc without doctor supervision and lab test monitoring. It is not uncommon to take another urine test after initial baseline test to determine whether or not the supps are adequate. Stress is key too. You both need to relax and take it easy. Scale back on the work schedule, commitments, and pick up a hobby-- maybe frequent the movie theatre for a while, or go to the library and get some good books. You NEED to do this as part of the treatment. Hope this helps. Welcome to the board. If you have further questions pop me another line either public or private. I usually pop in fairly regularly here.

Caryn

Oh, and one more thing: diet may play a role in the development and proliferation of pyroluria. You mentioned schitzophrenia? I can almost guarantee that your family may benefit from a gluten free diet. There is a huge connection to schitzophrenia and undiagnosed celiac's disease. Researchers are now discovering a neurologically based series of symptoms related to wheat/gluten intolerance. It can also be a factor in pyroluria but not necessarily. Just get off the bread for a few weeks, visit a few websites about celiac's disease and 'bone up'. Extreme vitamin and mineral deficiency is a classic sign of celiac's disease. If you feel loads better and less edgy then you know the wheat is 'stripping' your body of vital nutrients and leaving your CNS to function without all it needs. Just my two cents. We went gluten free and have had tremendous success.

[faith]

Hi Caryn,

 

I know you are pretty much corn free too, right? Could I ask what you substitute for going gluten free too? If I try that, I'm afraid there will not be much left to eat for my son, as you know so many things contain corn, so eliminating the wheat will surely be a challenge.

 

Could I ask what benefits you have noticed from the gluten free? Is it tics or for behavior? What do you use for grains/cereals/breads or do you just eliminate altogether? Is the whole family doing this or just your child? How is your son doing presently? Thanks so much for sharing your research and experience.

 

Thanks

Faith

[Caryn]

Faith,

I just finished a post on my blog about the connection between celiac's disease and neurological disorders. http://healthy-family.org/caryn/289

I am continually trying to find info connecting tic disorders to celiac's disease but it is inconclusive. My guess is that because tic disorders are a clinical disease that they are perhaps actually separate conditions/diseases that manifest with similar symptoms, much like with Autism. While a gluten free diet will benefit some kids with tics it will not benefit all kids with tics. (much like some struggle with pandas and need antibiotics.)

I also have a growing number of recipes and product reviews for anyone gluten free, casein free, corn free, feingold, or all of the above. Anyone can view the stuff. It is all free. I was so overwhelmed when originally faced with the whole dietary thing and could not find a place on the web that did both wheat and corn avoidance. We are not dairy free, but I often used non dairy alternatives. Call me crazy or just plain overly cautious. Please post any recipes you have. Give me tips on products you find too. Anything at all to build the menu is greatly appreciated.

As far as behavior and tics:

I have loosely connected the corn to

1. bedwetting
   
2. hyperactivity (Tigger syndrome)
   
3. bruxism
   

Likewise I have noticed that the wheat mainly affects the tics. How do I know this? Well, just call it mommy intuition. Little ds is still pretty honest about cheating (usually never happens but this past weekend he majorly fell off the bandwagon.) Needless to say he's been in goodnights for the past three nights. It didn't help that Nana and Papa gave him Kelloggs Rice Crispies while babysitting. Honest mistake. Funny thing, We are now on Tuesday and I purposely did not give him his vitamins to see what would happen. I am assuming he has detoxed as it has been three days. No tics. He is a little irritable, though. We are still dealing with pyroluria but I wonder if that will correct itself with further gf dieting. Some gf adults claim it takes three years to clear their bodies completely of some of the neurological effects (tingling sensations, that sort). If you'd like to try gluten free eating it certainly wouldn't hurt, but statisitically they have not found a high correlation. There is a correlation and it is much higher than the normal population but it is still a small percentage of the afflicted. A poster on another forum also mentioned aspartame and MSG ingestion prenatally could cause the development of neurological disorders in infants and children.

[brskac]

Caryn,

 

Thank you, thank you, thank you.

 

I have to tell you. When I first read about your suggestion about Celiac Disease, I was not very interested in learning more of it or about it. I just found out I was borderline pyroluric, and my son had severe pyroluria. That was enough for me at the time.

 

I knew having Celiac disease would be a complete overhaul of our diet and our lives, but I thought wheat (basically any bread or anything breaded), rye, barley couldn't possibly cause all these symptoms of IBS, chronic fatigue, fibromyalgia, painful joints, depression, adhd, and schizophrenia, weak dental enamel and discolored (very broad). After all so many people consume these products on a daily basis.

 

The more I thought about it, the more I thought I needed to give it a try. After all, celiacs become malnourished and can have vitamin and mineral deficiencies so it was not far fetched.

 

I have learned alot about celiacs. Celiac disease is one of the most common genetic diseases in the world. 1/133 people in the United States are estimated to have this genetic disease. 97% with Celiac disease goes undiagnosed.

 

So here I am a few months later. I have been on a completely gluten free diet. I have to say you were on to something. Now that I have been on the gluten free diet, if I am introduced to a gluten food (accidently, and this can happen) I get a headache, achy muscles, foggy head, and I feel like I am coming down with the flu.

 

My son is going to be tested on Tuesday for Celiac Disease. I've had him on the diet for 2 out of 3 meals a day (generally).

The reason why I have not had him on the diet completely is because the lab test will come out negative if your completely gluten free.

My son can't tell when he is glutened, but I certainly can tell. His behavior is much better when he is gluten free. For school I have been giving him a gluten free breakfast and gluten free lunch and he does so well in school when he is gluten free for the day.

 

I had to reply because I wanted to thank you Caryn. Celiac Disease is a multi-symptom disease that can cause different reactions to different genetic make-ups. I will keep you updated.

[michele]

What is the test for celiacs? Why is this pyrolauria so contraversal as a diagnosis? Traditional Dr.'s don't know or believe in its existance? What Dr. did you go to for celiac disease diagnosis? We had food allergy tests and tested negative to gluten intolerance. My son was positive for pyrolauria. He has the same symptoms as Caryn's son. I give him zinc pincolinate. I have not noticed a difference though in his state of mind. Someone here wrote about the connection to autism behaviors and pyrolauria. He has many autistic symptoms though. I am putting him back on the GF diet today. Hopefully that will make a difference.

Michele

Caryn,

 

Thank you, thank you, thank you.

 

I have to tell you. When I first read about your suggestion about Celiac Disease, I was not very interested in learning more of it or about it. I just found out I was borderline pyroluric, and my son had severe pyroluria. That was enough for me at the time.

 

I knew having Celiac disease would be a complete overhaul of our diet and our lives, but I thought wheat (basically any bread or anything breaded), rye, barley couldn't possibly cause all these symptoms of IBS, chronic fatigue, fibromyalgia, painful joints, depression, adhd, and schizophrenia, weak dental enamel and discolored (very broad). After all so many people consume these products on a daily basis.

 

The more I thought about it, the more I thought I needed to give it a try. After all, celiacs become malnourished and can have vitamin and mineral deficiencies so it was not far fetched.

 

I have learned alot about celiacs. Celiac disease is one of the most common genetic diseases in the world. 1/133 people in the United States are estimated to have this genetic disease. 97% with Celiac disease goes undiagnosed.

 

So here I am a few months later. I have been on a completely gluten free diet. I have to say you were on to something. Now that I have been on the gluten free diet, if I am introduced to a gluten food (accidently, and this can happen) I get a headache, achy muscles, foggy head, and I feel like I am coming down with the flu.

 

My son is going to be tested on Tuesday for Celiac Disease. I've had him on the diet for 2 out of 3 meals a day (generally).

The reason why I have not had him on the diet completely is because the lab test will come out negative if your completely gluten free.

My son can't tell when he is glutened, but I certainly can tell. His behavior is much better when he is gluten free. For school I have been giving him a gluten free breakfast and gluten free lunch and he does so well in school when he is gluten free for the day.

 

I had to reply because I wanted to thank you Caryn. Celiac Disease is a multi-symptom disease that can cause different reactions to different genetic make-ups. I will keep you updated.