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Porphyria and Celiec

Nyxks

By Nyxks
in Related Issues & Disorders

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Nyxks Newbie
Nyxks
Posted

This is something which I have been trying to understand since 2012 and even the Porphyria Association of America (UK I haven't gotten a repose from as yet) has 0 information or recommendations so I'm virtually on my own trying to figure things out and walk the knife edge with being a T1D on top of it all (plus other medical). 

What I am looking for is others who have Porphyria (specifically AIP, but any other's are welcome also), how does having Celiac effect your Porphyria treatment(s) or vice versa for that matter. I know there is a LONG list of drugs/medications that with Porphyria we can't have or should avoid yet some of those medications are not celiac safe (depending on the country you are in) and there is no alternative to that medication that would be safe to take. 

Does anyone find when they have a Porphyria attack that they also end up with a flair that mimics a gluten response or even vice versa (feels like a glutening but ends up being a Porphyria attack or even leads to an attack. 

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cyclinglady Grand Master
cyclinglady
Posted

This topic is really rare.  In fact, I did a quick search within the forum and found some old posts, but there were only 4 and one was yours!  

https://www.celiac.com/search/?&q=Porphyria &search_and_or=and

I think you are trying to distinguish a gluten exposure (attack or flare up in celiac disease) vs. porphyria.  It sounds like symptoms can overlap.  You can have your GI run follow-up celiac disease antibodies testing.  If elevated, you know that your celiac disease is still active.  There might be some OTC tests that could be available in your area.  Like: 

https://glutendetective.com

Gluten in medications is pretty rare.  The biggest problem is that you have to play “detective” (along with your healthcare providers), to insure if the medication is actually gluten free.   Pharmaceuticals should be transparent.  We should not have to jump through hoops.  The reality is that most medications are gluten free.  

Finally, I firmly believe that by triggering your celiac disease (activating it with gluten exposures), that it can activate other health issues.  For example, a gluten exposure not only triggers my celiac disease, but also affects my thyroid (Hashimoto’s) and stomach (Chronic Autoimmune Gastritis.  All three can flare.   Yikes!   Just as controlling blood sugar is hard for a T1D when your celiac disease is active.  

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