Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Porphyria?


Littllemel

Recommended Posts

Littllemel Apprentice

I was recently diagnosed with Porphyria. My GI is running more tests to see which type of Porphyria I have but my initial 24 hour urine test came up elevated in porphyrins. I have been poking around the forums and I noticed that heavy metals poisoning can be the problem and not Porphyria. Is there a test my GI DR can do for mercury? She barely believes my "leaky gut" stories and the 2 other GI's I have seen since don't believe it either. I saw the link to the great plains testing but I don't think she'll buy it. Why is it so hard for Dr's to believe that these illnesses occur?? Should I have all of my fillings removed immediately? I have 7!!


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi,

I don't know about the mercury filling if they are a big issue for you or not. I do have some myself though and I feel pretty good most of the time. Congratulations ? on the porphyria diagnosis, you got a rare one! Hopefully someone with some knowledge on it will show up soon. Now that you have an answer hopefully things will start a turn for the better.

Juliebove Rising Star

From what I have been told about fillings, you are better off to leave them in. Removing them can only release the bad stuff. But perhaps you should talk to your dentist about that. I have had a mouthful of fillings. Still have some but most are crowns now.

ndw3363 Contributor

I did heavy metal testing through hair analysis. At the time my levels were good (very high in copper however), but I decided to have my metal fillings changed anyway since one had cracked my tooth. I had a total of 6 replaced and had had them since I was about 14 years old (35 now). So I don't think that metal fillings alone will change mercury levels much. Do you eat a lot of fish?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,294
    • Most Online (within 30 mins)
      7,748

    Kevin Dallas
    Newest Member
    Kevin Dallas
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Raquel2021
      Yes stress can .make the pain worse. That being said it is taking years for my body to heal. I am not able to eat out as 98 % of restaurants do not know how to cook for celiacs.  I only eat out on special occasions. Any time I eat gluten I feel there is a tourch going through my digestive system specifically in the area you have mentioned.  Like where the deudenal is . I am very sensitive to cross contamination so any small amount of gluten makes me sick.
    • trents
      @Ems10, celiac diagnosis normally involves two steps. The first one is serum antibody testing which you may have already have had done and are waiting on the results. The second step involves and endoscopy (aka, gastroscopy) with biopsy of the small bowel lining. This second step is typically ordered if one or more antibody tests were positive, is a confirmation of the serum antibody testing and is considered the gold standard diagnostic test for celiac disease. Now hear this, you should not be eating gluten free weeks or months in advance of either kind of testing. Prematurely going on a gluten free diet can and will sabotage the results of the endoscopy/biopsy should you get a referral to a GI doc who would want to do that. Eliminating gluten from the diet causes causes inflammation to subside which allows the small bowel ling to heal such that the damage they would be looking for is no longer there.
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
    • Scott Adams
      It might make sense for you to find out if they've run a celiac disease test on you, and if not, consider planning for it.
    • Ems10
      Thanks for your reply! I’m really not too sure, the doctor just took a few tubes of blood & that’s all I know 🥹
×
×
  • Create New...