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

Pas Type 3


2kids4me

Recommended Posts

2kids4me Contributor

Well i finally got the results back on my daughter ...they did genetic tests in June.

HLA-DRB1 *04 and DQB1*302. Statement by geneticist: HLA subtyping shows that she does have 2 subtypes associated with Type III polyglandular autoimmune syndrome. Of course HLA typing is not diagnostic for this condition but does lend support to the diagnosis...they go on to say that she is at increased risk for Addison disease even though it is not part of type III - she can convert ot type II if it develops.

My understanding is that she is at risk for more autoimmune illness and it may explain why low dose aspirin keeps her feeleing well - although lately she always says her "glands hurt" and her mouth is dry....the "glands" she says hurt - are her salivary glands....sigh

More trips to pediatrician..

She is only 15 but already as seen more doctors than most 60 yr olds!!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Sandy are they using this finding to tell you she can't have celiac and that she doesn't need the diet? Her gene is real close to one of the ones I carry. Has she gone gluten free yet? Has it helped any?

DQBI*0302 is a recognized celiac gene in Europe, I wonder if they are talking about the same gene but just with an extra 0? This is an excerpt from the following link:

Open Original Shared Link

"Genetic susceptibility to celiac disease is strongly associated with HLA-DQA1*05-DQB1*02 (DQ2) and HLA-DQA1*03-DQB1*0302 (DQ8)"

2kids4me Contributor

No, they know she is celiac - she was confirmed celiac by endoscopy and has been gluten free since. This test was to confirm suspicion of susceptibility to a specific cluster of autoimmune diseases known as PAS III. This way, if she were to have vague ongoing symtpoms that do not point to a specific illness - there would be certain diseases they would test for.....that would not normally be checked in a teenager / young woman.

from : Open Original Shared Link

PAS III can be further classified into the following 3 subcategories:

PAS IIIA - Autoimmune thyroiditis with immune-mediated diabetes (IMD) mellitus (type 1 diabetes mellitus)

PAS IIIB - Autoimmune thyroiditis with PA

PAS IIIC - Autoimmune thyroiditis with vitiligo and/or alopecia and/or other organ-specific autoimmune disease

PAS III is associated with the following diseases:

Organ-specific autoimmune diseases

Celiac disease

Hypogonadism

Myasthenia gravis

Organ nonspecific or systemic autoimmune diseases

Sarcoidosis

Sj

ravenwoodglass Mentor
No, they know she is celiac - she was confirmed celiac by endoscopy and has been gluten free since. This test was to confirm suspicion of susceptibility to a specific cluster of autoimmune diseases known as PAS III. This way, if she were to have vague ongoing symtpoms that do not point to a specific illness - there would be certain diseases they would test for.....that would not normally be checked in a teenager / toung woman.

from : Open Original Shared Link

Thanks for posting that link, it looks like something I will find interesting to delve into further. I do so love researching stuff. :D

It sounds like she has a good group of doctors that are being proactive and thorough that is a good thing.

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. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    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

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.