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What Do People Know About Iron Infusions

anemic

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anemic Rookie
anemic
Posted

Hello everyone!

I have had 10 iron infusions in the last ten weeks that was supposed to cure my severe anemia from celiac. At first the treatments appeared to be working fairly well but in the last month or so my ferritin has levelled off and is no longer increasing with treatment. I will be seeing my hemotologist in a month or so to discuss the problem but wondered if anyone else has had this. Of course, my worry is that it is not just celiac but also another disease affecting my blood. Any thoughts would be most appreciated.

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CarlaB Enthusiast
CarlaB
Posted
Of course, my worry is that it is not just celiac but also another disease affecting my blood.

You might Google babesia and malaria. They both go after red blood cells.

Rusla Enthusiast
Rusla
Posted

I have had iron infusions and had to also continue to have iron shots. I got sick of the needles and feeling like a junkie with non or the hallucinations so, I have opted for sublingual b-12 they work great as long as I take them. If I forget my B-12 and ferratin drop like a stone.

  • 4 weeks later...
JodiC Apprentice
JodiC
Posted

I am going to be going in this week for iron inffusions. I was really hoping they would work and I would feel alittle better. I wonder if there isn't some bleeding going on somewhere in your body that is causing this. What is the rest of your bloodwork like? I am dealing with extremely low levels of iron, D and C (scurvy).

confusedks Enthusiast
confusedks
Posted

Hello,

I had a treatment of 5 IV's of iron (consecutively) and they raised my ferritin from nothing (literally came back on labs as .3<) After the treatments it went up to 130!!! This was great, but then they went back down to 40 in less than 4 weeks. The doctor told me to make SURE I was taking Folic Acid while the treatments, and I should keep taking them, but that's a whole other issue. You must be taking this for the iron to absorb in your body. Talk to your hematologist about how much to take. I hope this helps.

feel free to PM me if you have and questions or just wanna talk

Kassandra

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    • trents
      Small Bowel Resection 12 inches

      By trents · Posted

      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
      Small Bowel Resection 12 inches

      By Ello · Posted

      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
      Small Bowel Resection 12 inches

      By trents · Posted

      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
      Small Bowel Resection 12 inches

      By Ello · Posted

      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
      Small Bowel Resection 12 inches

      By trents · Posted

      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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