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SIMPONI ARIA WITH CELIAC DISEASE


KsBlonde

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KsBlonde Newbie

Hello. I am 53 and was diagnosed with Celiac Disease by biopsy a little over a year ago and have been on gluten free diet ever since. But, since then, I have been diagnosed with 5 other autoimmune diseases plus stage 3 Osteoporosis and am now disabled. One of my autoimmune diseases is Ankylosing spondylitis which is treated with biologics. I have been scared to try it, but finally am in enough pain, I have no other choice but to try it. My Rheumatologist is getting me approved for Simponi Aria infusions. My question is, first of all, is Simponi Aria gluten free and, secondly, is it safe for Severe Celiacs? I have researched everywhere with no luck. Thirdly, she wants me to start prolia infusions in a few months for my Osteoporosis. Does anyone have any experience with this or have any information on the safety of Simponi Aria and Prolia for Celiacs. From my past experience, I have to educate my specialists and especially primary care doctor, my dentist, and my pharmacy on their gluten containing products and medicines. Any information about biologics, especially Simponi Aria and Prolia would be so very helpful. Thanks so much.


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trents Grand Master
(edited)

Welcome to the forum, @KsBlonde! To find out if these drugs contain gluten, you might want to find out who manufactures them and contact that company to ask the question. A pharmacist can usually help you with manufacturer info. As long as the med or its container does not intentionally contain gluten I would not worry about things like cross contamination. This tool might help: https://dailymed.nlm.nih.gov/dailymed/

Just intuitively, it seems possible that the Simponi Aria infusions might be of benefit to your celiac disease since this drug suppresses inflammation. As far as the Prolia goes, as long as the med itself is gluten free I don't see any reason that it should exacerbate your celiac disease from my own quick research. I am not a doctor and these are just my unofficial thoughts.

Edited by trents
plumbago Experienced

Hi @KsBlonde,

Honestly, I've never even thought about gluten in IV medications (if your concern is indeed that). I seriously doubt is something to be concerned about. I am a nurse who regularly receives vaccines and occasionally IV anesthesia - ie, recently for an EGD/colo. I didn't even think to ask about it!

And not that you asked, but I'm not that concerned either about oral meds - https://www.fda.gov/drugs/buying-using-medicine-safely/medications-and-gluten

But, FWIW, the site below says Prolia has no gluten. Seems it's from New Zealand.

https://medsafe.govt.nz/consumers/cmi/p/prolia.pdf

RMJ Mentor

I’m sure I’ve heard that there is no gluten or wheat in injectables.  I just searched the FDA inactive ingredients database for gluten, wheat, barley, and rye. None are listed as being used in injectables. Wheat starch can be used in tablets.

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      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
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      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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