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.

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