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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Pyroluria
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6 posts in this topic

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

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anyone? please

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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. :)

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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:

http://altmedicine.about.com/library/weekl...chlorhydria.htm

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.

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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

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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.

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