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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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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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