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Autoimmune Polyglandular Syndrome 1 And Celiac

Shane's Mom

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Shane's Mom Newbie
Shane's Mom
Posted

My 17 yr old son was diagnosed w/aps1 in 1995 and has since been diagnosed w/ auotimmune hepatitis, hypoparathyroidism, hypocalcemia, kidney issues from calcium and now we believe he has Celiac's Disease. A few weeks ago, he was taken by ambulance for having a seizure, which is not part of his other medical issues. They weren't sure it was a seizure, but that's what wittnesses said. His calcium was low and they treated him for that. Low calcium is something we've dealt with many times, but he's since been in ER four times last week and admitted for four days, not absorbing the calcium. It's common with his syndrome to have malabsorbtion or Celiac's, but have never spoken with anyone else who has this combination. His magnesium and potassium were also very low. Anyone out there know anyone with this combination? I appreciate any help.

Kari

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2kids4me Contributor
2kids4me
Posted

Doesnt aps 1 include addisons? Addisons would affect the potassium levels.

Celiac is autoimmune and can occur with any of the aps (1, 2 or 3).

Our family is polyendocrine - kids are classed as aps 3

son - type 1 diabetes, celiac, lactose intolerant

daughter - hypothyroid, celiac, lactose intolerant, gilberts syndrome, Kawasaki (recovered)

Mom (me) - type 1 diabetes, hypothyroid, pernicous anemia.

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Thanks @Scott Adams. Do you know if Kirkland Signature supplements share facility and production lines with other products containing gluten?  I'm worried that I'll react to this brand just like I did with other gluten-free labelled supplement brands. 
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      Unexpected gluten exposure risk from cultivated mushrooms

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      Unexpected gluten exposure risk from cultivated mushrooms

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      This is a really common area of confusion. Most natural cheeses (cheddar, Swiss, mozzarella, Parmesan, brie, camembert, and most blue cheeses) are inherently gluten-free, and you’re right that the molds used today are typically grown on gluten-free media. The bigger risks tend to come from processed cheeses: shredded cheese (anti-caking agents), cheese spreads, beer-washed rinds, smoke-flavored cheeses, and anything with added seasonings or “natural flavors,” where cross-contact can happen. As for yeast, you’re also correct — yeast itself is gluten-free. The issue is the source: brewer’s yeast and yeast extracts can be derived from barley unless labeled gluten-free, while baker’s yeast is generally safe. When in doubt, sticking with whole, unprocessed cheeses and products specifically labeled gluten-free is the safest approach, especially if you’re highly sensitive.
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