Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Iv Iron


October3

Recommended Posts

October3 Explorer

My son's GI is apparently considering giving him Intravenous Iron Sucrose if his labs have not improved by the next check. :huh: Anyone been through this? Just wondering what is involved. How long does the treatment last and how often is it prescribed usually?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



October3 Explorer

Alright, I've done a little reading up and now I'm freaking out a bit. Sounds very scarey and something to be avoided at all costs. Actually, my thought is "Oh hell no, my baby is not going to do that!"

I'll listen to reason. Maybe the stories are just the bad experiences and most of the time is actually works out well?

In the mean time I'm off to the store to get green smoothie mixings.....

hexon Rookie

Alright, I've done a little reading up and now I'm freaking out a bit. Sounds very scarey and something to be avoided at all costs. Actually, my thought is "Oh hell no, my baby is not going to do that!"

I'll listen to reason. Maybe the stories are just the bad experiences and most of the time is actually works out well?

In the mean time I'm off to the store to get green smoothie mixings.....

In addition to the green stuff you may want to makes some clam chowder, turkey, or beef too. Clams are high in iron. Beans also have more iron than your leafy greens. Open Original Shared Link

samie Contributor

I've had iron iv before. I went to a hematologist at a cancer clinic to get it done. I think there are two different types I think. The first type is a one day it takes a couple hours I can't have it cause I had an allergic reaction. They will probably have the first twenty minutes watching for signs of a reaction. The other type I ended up getting I went in and it was about 3 days a week for a couple of Weeks. They will probably recheck his blood work a couple Weeks later once he's done.

October3 Explorer

In addition to the green stuff you may want to makes some clam chowder, turkey, or beef too. Clams are high in iron. Beans also have more iron than your leafy greens. Open Original Shared Link

Thanks Hexon.

October3 Explorer

I've had iron iv before. I went to a hematologist at a cancer clinic to get it done. I think there are two different types I think. The first type is a one day it takes a couple hours I can't have it cause I had an allergic reaction. They will probably have the first twenty minutes watching for signs of a reaction. The other type I ended up getting I went in and it was about 3 days a week for a couple of Weeks. They will probably recheck his blood work a couple Weeks later once he's done.

Its the allergic reaction part that scares me Samie. It seems like more people than not who I've run across who have had the treatment have had a reaction. I'm not sure which one they are thinking of for my son - they just said Iron Sucrose injection. Beyond the reaction piece it sounds like its pretty time consuming as well.

Thanks for sharing your story.

Jestgar Rising Star

Alright, I've done a little reading up and now I'm freaking out a bit. Sounds very scarey and something to be avoided at all costs. Actually, my thought is "Oh hell no, my baby is not going to do that!"

I'll listen to reason. Maybe the stories are just the bad experiences and most of the time is actually works out well?

In the mean time I'm off to the store to get green smoothie mixings.....

Is he taking supplemental iron? I used SlowFe with no trouble.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

Is he taking any iron supplements? Is he taking them properly? On an empty stomach and no food for an hour after. If he really needs something, he can have fruit or a piece of meat with it. Never dairy with the iron. Dairy keeps it from absorbing. Also, vitamin C and B12 everyday to help use the iron to make healthy blood cells.

October3 Explorer

Is he taking any iron supplements? Is he taking them properly? On an empty stomach and no food for an hour after. If he really needs something, he can have fruit or a piece of meat with it. Never dairy with the iron. Dairy keeps it from absorbing. Also, vitamin C and B12 everyday to help use the iron to make healthy blood cells.

Yes, he's taking iron supplements but finding the right way to do it has been tricky. He's only 7 and can't swallow the huge pill our old GI prescribed which had C and B12 included. We tried cutting it up but that damaged the coating and made it harder to swallow. So we switched to liquid iron which tastes horrible and gives him stomach aches if its on an empty stomach. We give that mixed in Vit C rich juice along with vit D. We used to also do a B mix along with it but he's not tolerating the liquid B recently so we've dropped that. We generally don't wait the whole hour because we don't have time and because it will upset his stomach. He has to take this 3 times a day and there just isn't time to wait an hour with trying to get off to school in the mornings and then fitting snacks and dinner around it all. He tends to be hypoglycemic too and so the timing of snacks is important.

We did 6 weeks of the 3 times a day, B/ D/ iron mixed in juice religiously and his Hemoglobin and Hematocrit were good but his total iron stores were still a bit low. Then we slacked off for a month and gave it only once or twice a day and he dropped down to anemic again. That was when we started working with the new GI, so he maybe doesn't understand that my son's levels will improve with the right combo. Its just really hard to keep that up long term. Lots of tears and stress and negotiating going on. But he just went gluten-free this week so hopefully that will help too.

October3 Explorer

Is he taking supplemental iron? I used SlowFe with no trouble.

Thanks Jestgar. Will have to check into SlowFe. I don't know if he could swallow a smaller pill but might be worth seeing.

kareng Grand Master

Sounds like you know how to make the supplements work. I never had a doc explain it to me so I thought I would make sure.

There is no reason he couldn't eat something with it, just not dairy. If you are giving him a citrus juice on an empty stomah that can be irritating (lots of acid). Ther are foods that have a lot of iron if he would eat them. I remember raisens, dried apricots, egg yolks, blueberries besides the stuff we all associate with iron like spinach, beef & bison.

I don't know how long he has been gluten-free, but after a few months, I was healed enough not to need the massive doses of iron.

Edited:

Just thought of this. Could he drink a Vitamin water? They have full sugar and artificial sugar versions. They have B12, C, etc in them. I'm not sure they are the best way to get B12 but desparate times call for desparate measures.

Also, The only way I can eat raisens & dried apricots are mixed with salty peanuts. I cut the apricots with my kitchen scissors into little pieces.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,203
    • Most Online (within 30 mins)
      7,748

    Sarahmegan
    Newest Member
    Sarahmegan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.