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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

    2. - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

    3. - trents replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

    4. - FannyRD posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,180
    • Most Online (within 30 mins)
      7,748

    Eldret419
    Newest Member
    Eldret419
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • FannyRD
      Thanks for the resource! I will check it out!
    • Scott Adams
      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
    • trents
      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on how they are cooked. I don't do well with them when fried or scrambled but they don't give me an issue when included in baked and cooked food dishes or when poached. I have done some research on this strange phenomenon and it seems that when eggs are cooked with water, there is a hydrolysis process that occurs which alters the egg protein such that it does not trigger the sensitivity/intolerance reaction. Same thing happens when eggs are included in baked goods or other cooked dishes since those recipes provide moisture.  So, let me encourage you to try poaching your eggs when you have them for breakfast. You can buy inexpensive egg poacher devices that make this easy in the microwave. For instance:  https://www.amazon.com/Poacher-Microwave-Nonstick-Specialty-Cookware/dp/B0D72VLFJR/ Crack the eggs into the cups of the poacher and then "spritz" some water on top of them after getting your fingers wet under the faucet. About 1/4 teaspoon on each side seems to work. Sprinkle some salt and pepper on top and then snap the poacher shut. I find that with a 1000 watt microwave, cooking for about 2 minutes or slightly more is about right. I give them about 130 seconds. Fatigue and joint pain are well-established health problems related to celiac disease.  Are you diligent to eat gluten-free? Have you been checked recently for vitamin and mineral deficiencies? Especially iron stores, B12 and D3. Have you had your thyroid enzyme levels checked? Are you taking any vitamin and mineral supplements? If not, you probably should be. Celiac disease is also a nutrient deficiency disease because it reduces the efficiency of nutrient absorption by the small bowel. We routinely recommend celiacs to supplement with a high potency B-complex vitamin, D3, Magnesium glycinate (the "glycinate" is important) and Zinc. Make sure all supplements are gluten-free. Finally, don't rule out other medical problems that may or may be associated with your celiac disease. We celiacs often focus on our celaic disease and assume it is the reason for all other ailments and it may not be. What about chronic fatigue syndrome for instance?
    • FannyRD
      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac.  Ferric citrate (Auryxia)  Sucroferric oxyhydroxide (Velphoro)  lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela)   Thank you!
×
×
  • 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.