Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Pyroluria


fedora

Recommended Posts

fedora Enthusiast

hi,

yesterday I ran into a nutritional consultant(college graduate and licensed in california) doing consultations at a health food store. I went in to get lysine for my DD who has cold sores. She cultured positive for herpes simplex:( So we get to talking about my daughter. After discussing various things she hands me this book, the Mood Cure, that has a list of symptoms for pyroluria. I started going down the list and right away was answering the questions for myself. I answered yes to alot of them. Pyroluria is a genetically caused vit B6 and zinc defiency.

so has anyone done the urine test for this? Anyone treating it? Would love to know more.

I found this quiz online. It is not exactly the same as the one in the book.

1. Do you tend to skip breakfast or have morning nausea?

2. Do you tend to be anxious?

3. Do you have other members in your immediate or extended family with schizophrenia?

4. Are there members of your immediate or extended family who have committed suicide?

5. Do you have white spots on your nails?

6. Did you get a "stitch" in your side when you ran as a child?

7. Did you have moderate to severe acne as a teenager?

8. Do you have pain or creaking in your knees?

9. Do you have cold hands and feet?

10. Do you have stretch marks as an adolescent or adult even without a large weight gain or loss?

11. Are your teeth or were your teeth before orthodontic treatment crowded with teeth growing over teeth?

12. Did puberty start a little later for you than others?

13. Are you easily tired?

14. Do you tend toward apathy?

15. Do you have a tendency toward iron-deficiency anemia or test borderline?

16. Do you have eczema or psoriasis?

17. Do you have tingling sensations or even tremors in your arms or legs?

18. Do you tend to have paler skin than other family members?

19. Do you tend to get overwhelmed in stressful situations?

20. Do you have trouble remembering your dreams?

21. Are you now or have you been a vegetarian?

22. Are you now or have you before been an alcoholic?

23. Do you find yourself socially withdrawn and dependent fairly strongly on one person?

I answered yes to 15 of these and answered yes to having white spots on nails at times(just not currently).

If you answer yes to 12 or more of these questions, then you may have pyroluria and should consider getting the lab test done.

thanks


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



fedora Enthusiast

anyone? please

SilverThea Newbie

I fit the 'profile', and had the testing done a few years back, but no dice.

*shrugs*

I have since found other reasons for many of the symptoms... would have been nice to be able to sum it all up with pyroluria though.

Hope you find some answers. :)

Mother of Jibril Enthusiast

I could answer yes to a lot of those questions too... :unsure:

The idea I'm testing right now is that I might have vitamin and mineral deficiencies caused by low stomach acid (hypochlorhydria). Here's one link I found for more information:

Open Original Shared Link

Over the last few days I've been wondering if some of my lingering problems (after taking thyroid hormones and cutting dairy, gluten, and corn out of my diet) are caused by vitamin and mineral deficiencies. Celiac can cause this problem because your intestines are not absorbing nutrients properly... without enough acid your stomach doesn't digest properly either. In both cases you end up with deficiencies. I quickly looked at some information about pyroluria... it's associated with a lack of B6 and zinc.

Deficiencies can do all kinds of crazy things to your body :angry: I'm taking several supplements right now (fish oil, multivitamin, calcium, vitamin D, brazil nuts for selenium, Emergenc-C), but if I can I'd like to correct the underlying problem instead of adding more supplements.

  • 6 months later...
gfcaryn Newbie

Hi, I just joined this forum and saw this post. I have recently been confirmed as gluten intolerant (by gene test) and I also have Chronic Lyme. My doctor tested me for pyroluria because I have some of the physical symptoms, though not so much the anxiety and mental symptoms. He thinks I have it as a result of damage by the Lyme. There are also some other symptoms, like inability to detox, inability to tolerate gluten and casein (dairy), and others that he got at a recent conference on the subject (so it is most current research). I tested 40 on a test where 20 was a positive diagnosis. The test is very easy (except for having to go off my meds and supplements before the test) and relatively inexpensive. It is just a urine test. The treatment is very easy, just taking the supplements. He has me taking the p5p(B6), GLA from Borage Oil, a special zinc and manganese.

hi,

yesterday I ran into a nutritional consultant(college graduate and licensed in california) doing consultations at a health food store. I went in to get lysine for my DD who has cold sores. She cultured positive for herpes simplex:( So we get to talking about my daughter. After discussing various things she hands me this book, the Mood Cure, that has a list of symptoms for pyroluria. I started going down the list and right away was answering the questions for myself. I answered yes to alot of them. Pyroluria is a genetically caused vit B6 and zinc defiency.

so has anyone done the urine test for this? Anyone treating it? Would love to know more.

I found this quiz online. It is not exactly the same as the one in the book.

1. Do you tend to skip breakfast or have morning nausea?

2. Do you tend to be anxious?

3. Do you have other members in your immediate or extended family with schizophrenia?

4. Are there members of your immediate or extended family who have committed suicide?

5. Do you have white spots on your nails?

6. Did you get a "stitch" in your side when you ran as a child?

7. Did you have moderate to severe acne as a teenager?

8. Do you have pain or creaking in your knees?

9. Do you have cold hands and feet?

10. Do you have stretch marks as an adolescent or adult even without a large weight gain or loss?

11. Are your teeth or were your teeth before orthodontic treatment crowded with teeth growing over teeth?

12. Did puberty start a little later for you than others?

13. Are you easily tired?

14. Do you tend toward apathy?

15. Do you have a tendency toward iron-deficiency anemia or test borderline?

16. Do you have eczema or psoriasis?

17. Do you have tingling sensations or even tremors in your arms or legs?

18. Do you tend to have paler skin than other family members?

19. Do you tend to get overwhelmed in stressful situations?

20. Do you have trouble remembering your dreams?

21. Are you now or have you been a vegetarian?

22. Are you now or have you before been an alcoholic?

23. Do you find yourself socially withdrawn and dependent fairly strongly on one person?

I answered yes to 15 of these and answered yes to having white spots on nails at times(just not currently).

If you answer yes to 12 or more of these questions, then you may have pyroluria and should consider getting the lab test done.

thanks

  • 6 months later...
twe0708 Community Regular

This is an old post but I was just researching white spots on my nails and Pyroluria popped up. The problem is only on my toe nails and it looks as if someone has scratched the tops of them. Is this what they are referring to when they say white spots on nails? It's almost as if they are dried out! I also experience some of the other symptoms listed but would like to address the white spots. I see it says maybe more B-6 and Zinc but does anyone know how much more. I already take a multi vitamin. Any thoughts?

Also, here is the crazy thing! I just went in to my bathroom and got a nail file and softly filed the tops of my nails and the white comes off. I use to think this was a nail infection but my doc said I wouldn't be able to file it away. I usually where nail polish because I don't like my nail bare, so it's hard to tell how fast it comes back. Has anyone else had this problem. And I know it's not from my nail polish. Honestly, when I remove my nail polish, my nail looks so dried out and white but once I buff it out it looks normal again.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,590
    • Most Online (within 30 mins)
      7,748

    uhlissuh
    Newest Member
    uhlissuh
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.