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Autoimmune Polyglandular Syndrome


HAK1031

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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?


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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

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

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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.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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