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Guest Cari5393

Iv Iron - Anyone Had To Get It?

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Guest Cari5393

I was just wondering if anyone out there knew anything about recieving Iron supplements through an IV. I have looked online and cannot find anything recent on it. This is the next step in tests my GI Dr. reccomended. My iron was at 3, before the Celiac diagnoses. Any help/info would be greatly appreciated as I am quite new to all this. Thanks.

Cari

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My sister had to have IV iron transfusions before she found out she was celiac, they told her she would have to have them once a month for the rest of her life. In the beginning, she had them every Wednesday, for 4 hours. Then she was diagnosed with celiac disease, went gluten free and has not had a transfusion since. The gluten was robbing her of her iron. She does have to keep an eye on her iron levels, but she does not get transfusion anymore, that was 7 yrs ago.

Where do you live, she is in Michigan? She is a celiac and a dietician, I am sure she would talk with you if you wanted over the phone---let me know.

darlindeb25@aol.com please put from celiac forum in the subject line

Deb


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Guest Cari5393

I am in Michigan also! You must be kidding a Celiac and a Dietician...she may be my new best friend. I have been diagnosed for almost a month and I have gone from "ok, i can do this" to "are you kidding me, gluten is in EVERYTHING!". Do you know if she had any side effects from the iron? My doctor told me ev ery 2 weeks until my levels are normal again. That sounded like a lot. I know the iron supplements just tore up my stomach when i would take them. I just watn to know what to expect. I start them next Tuesday.

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I have a friend who has Crohn's disease (and I think celiac too, but she won't consider it) who is getting iron injections. Her doc said that they could either do IV or a series of 15 shots over the course of 3 days. I believe that she said that the IV would have been done every 4 weeks, but I'm not positive.

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I had iron infusions prior to my celiac DX. My doctor said that my iron was the lowest he had ever seen. <_< It is an office procedure administered by a nurse. You will be given a strong antihistamine like Benadryl before they start the infusion to help you avoid an allergic reaction. You are likely to feel a little sleepy from that. They may require you to have someone available to drive you home after the procedure. Infusion can take up to 8 hours, because they don't want to give you too much too fast and make your body have an allergic reaction. I felt like a million bucks after my infusions. I remember having pink cheeks and not feeling cold all the time anymore.

Also - remember that all that iron at one time can be extremely constipating. You may need to take something to help things along.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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I have had 5 of them in the last 3 years. I agree with cruelshoes about afterwards not feeling so cold all the time. I have not had one since my surgery in July but have to go to the doc in Dec for blood work, cat scans, etc to see how it is going. The only side effect I had from the infusion was a little constipation. Good luck.


jennyj

Diagnosed March 2006 celiac sprue

Severe iron deficent anemia Jan 2002

Hypoglecemia 2000

"I can do all things through Christ who strenghtens me"

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Cari5393,

I have had a series of iron IV's because my ferritin was at less than zero! My hematologist freaked out. I too could not take oral iron, and even if I could, he said it would probably take me almost a year to get my ferritin up to 150 (where it should be for my age, weight, height, etc.) My infusions only took a couple hours. They do have to watch you closely because if they're using the same medicine, ferlocit, it can stain your skin if it doesn't go in your vain only.

What number was at 3? That is important to know. Let use know!

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Guest Cari5393

I am pretty sure it was my hemoglobin that was at 3. I tried taking oral supplements to, but because of the Celiac, nothing was getting absorbed. The iron and a low B12 are all we are dealing with for now. I did the small intestine detail, and a bone denisty is somewhere in the future, but those were/are pretty standard I hear.

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