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

Autoimmune Polyglandular Syndrome


HAK1031

Recommended Posts

HAK1031 Enthusiast

Hey all,

I stumbled across this on discovery health's mystery diagnosis ;) But is sounded like something a lot of us here should be interested in. Here is link that explains it well:

Open Original Shared Link

I think this is something I might want to ask the doctor about, but I wanted to know anyone's opinions, especially those who are familiar with it. From what I've read candidiasis is one of the main symptoms, and I don't know if I had it as a child but I suspect I have it in my nailbeds now. I also don't menstruate (well, ovulate...I have very light infrequent menstruation) on my own and have been on birth control. I also have low blood pressure, CFS, numbness/poor circulation in extremities, and a history of low calcium (I broke 7 bones as a child). And, of course, all of the intestinal/celiac stuff.

But I feel a bit like I may be overreacting. I also have had my thyroid tested numerous times and it was normal...does anyone know if they test for PTH as well? Heh, I would hate coming into the doctor with an unfounded TV/internet self-diagnosis :) any thoughts?


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Yes... I've done a fair amount of reading about this. There are basically three kinds of PAS.

Type 1 is rare and usually develops in childhood; the main features are Addison's disease and hypoparathyroidism, both caused by autoimmune organ damage

Open Original Shared Link

Type 2 is also called "Schmidt's syndrome" and involves Addison's plus type 1 diabetes and/or an autoimmune thyroid condition

Open Original Shared Link

Type 3 involves an autoimmune thyroid condition plus at least one other autoimmune disorder (celiac, vitiligo, Sjogren's, RA, etc...) but not type I diabetes or Addison's; this is most common among adults and is probably the most common type of PAS overall

Open Original Shared Link

I'm pretty sure I have Type III PAS... I bet a lot of people on this forum do :(

redwolfgirl Newbie

My husband has alopecia and hypothyroidism and I did some research to see if it is linked to Celiac's because he was having some digestive issues. In doing so, I stumbled upon Polyglandular Autoimmune Syndrome, Type III. He is being tested for Celiacs and then we will know for sure. I have read that some with alopecia have "silent celiac" in that they do not have any symptoms. He has never had gastro symptoms until the last 6 months.

georgie Enthusiast

This is me - right to the possible Myasthenia Gravis dx of Type 2. I have Addisons but Drs cannot prove if its Primary or Secondary .. <_< So cannot get the PAS dx yet.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to kate g's topic in Gluten-Free Restaurants
      1

      Nandos improper preparion celiac childrens food

    2. - Scott Adams replied to Di Wallace's topic in Related Issues & Disorders
      2

      Mucus discharge

    3. - Scott Adams replied to Captain173's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Confused with test results

    4. - Captain173 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Confused with test results

    5. - Beverage replied to cameo674's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,827
    • Most Online (within 30 mins)
      7,748

    Gary Briz
    Newest Member
    Gary Briz
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
    • Scott Adams
      I had this symptom when I was diagnosed. Are you sure that your diet is 100% gluten-free?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):      
    • Scott Adams
      Based on your results, it seems unlikely that you have celiac disease. A negative endoscopy and the absence of HLA-DQ2/DQ8 genes (the primary genetic markers for celiac) strongly suggest you do not have the condition. However, the elevated TTG-IgA (22) could indicate a temporary immune response or another issue, such as a different autoimmune disorder, intestinal infection, or even a lab anomaly. The presence of DQA1*05 alone is not diagnostic for celiac. Meeting with an allergist and GI specialist is a good next step to explore other potential causes for the high antibodies, such as non-celiac gluten sensitivity or other immune-related conditions. Keep a detailed food and symptom diary to help guide further testing and discussions with your doctors. 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.
    • Captain173
      I had celiac panel done back in October, only ttg iga came back high  (22 with positive being over 3). Endoscopy done in January, it was  negative. Genetic test done after endoscopy, negative for both hla dq2 & dq8. Did show positive for dqa1*05.  Scheduled to meet with an allergist next week. Not scheduled to meet with GI specialist till after allergist. Confused if I have celiac or what caused high the antibodies originally if I do not.
    • Beverage
      Tums is an antacid.  Calcium (also vitamin D) need it acidic for absorption, so you're not really getting any calcium benefit.  Try DGL, it coats rather than counteracts acid. You need acid anyway to digest and get those vitamins. It's usually not too much acid that causes heartburn, it's not enough acid which causes food to rot and ferment in the stomach. Try DGL, everyone I've gotten to actually try it has had great relief. https://www.amazon.com/dp/B001IAJW0K  
×
×
  • Create New...