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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,904
    • Most Online (within 30 mins)
      7,748

    AnneSN
    Newest Member
    AnneSN
    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

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • 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.