A Kinder, Gentler Iron Supplement?

[penguin]

Soooo, the GI's office called today with my iron study results. Big shock! I'm more anemic than I thought!

Hematocrit 19 when over 40 is normal

Saturation was 4% when 20%-50% is normal

Ferritin was 4 when over 10 is normal

Is that really bad?

Anyway, the doc wants me on an iron supplement ASAP and is asking the dr about what I can take since supplements generally make me sick. Just icky feeling and burning in my throat, nothing big, but enough to keep me from being fully functional. My mom says I need to be on them whether they make me sick or not based on those stats

I think I'm going to try baby vitamins, since they're liquid. Would they be gentler?

What do y'all do? I hate liver and sardines, and I am allergic to walnuts. Beans don't sit with me well. Ideas?

[AndreaB]

I took a supplement called gentle iron about 7 years ago. Fred Meyer/Kroger carried it. I forget the brand name.

Some foods that contain iron:

Egg yolk

Fish

Garbanzo beans

Lentils

Liver

Molasses, blackstrap

Mussels

Oysters

Red Meats

Seaweed, greens

As well as bread that we can't eat.

Note: Only about 10 percent of food iron is absorbed from food consumed by an individual with normal iron stores; however, an iron-deficient person may absorb 20 to 30 percent.

This info is from Vitamins, Herbs, Minerals and Supplements The Complete Guide

[angel-jd1]

When I was first diagnosed my iron level was low. I ate lots of spinach salads and ate lots of steak. The catch is that when you eat the meat, drink a glass of orange juice with it. Something in the oj breaks down the iron so that it can be absorbed better. It really helped me.....and steak as a medical treatment isn't a bad one for me

-Jessica

[jerseyangel]

I don't have a lot of luck with iron suppliments. They are very hard on my stomach. Before I was diagnosed, my hemiglobin was at 8. My doctor told me to take a suppliment, and I first tried Enzymatic Therapy--it made me terribly sick. I then tried Slow Fe--it was better, and I stuck with it for a while, but stopped because of the nausea. I deceided, on my own, to take a Centrum every day, eat the iron-rich foods that agreed with me (luckily I have no problem with meats), and see if that along with the gluten-free diet would help. After 6 months, my hemiglobin was up to 14.6!

[penguin]

I don't have a lot of luck with iron suppliments. They are very hard on my stomach. Before I was diagnosed, my hemiglobin was at 8. My doctor told me to take a suppliment, and I first tried Enzymatic Therapy--it made me terribly sick. I then tried Slow Fe--it was better, and I stuck with it for a while, but stopped because of the nausea. I deceided, on my own, to take a Centrum every day, eat the iron-rich foods that agreed with me (luckily I have no problem with meats), and see if that along with the gluten-free diet would help. After 6 months, my hemiglobin was up to 14.6!

The thing is that I can't take centrum, because it makes me nauseated and makes my throat burn. Any adult vitamin does that, and even the kids ones do it to me now.

When I was a poor student and I was trying to donate plasma, I ate cream of wheat and oj to bring my iron up enough to do the donation. It worked for a few days... then they got my more comprehensive bloodwork back and I guess I had some antibodies going...

Anyway, can't tolerate vitamins well.

Does anyone know if those levels I have are really bad? Or only a little bad?

[Green12]

The thing is that I can't take centrum, because it makes me nauseated and makes my throat burn. Any adult vitamin does that, and even the kids ones do it to me now.

When I was a poor student and I was trying to donate plasma, I ate cream of wheat and oj to bring my iron up enough to do the donation. It worked for a few days... then they got my more comprehensive bloodwork back and I guess I had some antibodies going...

Anyway, can't tolerate vitamins well.

Does anyone know if those levels I have are really bad? Or only a little bad?

I don't know about the levels,

but I eat beef and beets for an iron kick.

[jerseyangel]

The thing is that I can't take centrum, because it makes me nauseated and makes my throat burn. Any adult vitamin does that, and even the kids ones do it to me now.

When I was a poor student and I was trying to donate plasma, I ate cream of wheat and oj to bring my iron up enough to do the donation. It worked for a few days... then they got my more comprehensive bloodwork back and I guess I had some antibodies going...

Anyway, can't tolerate vitamins well.

Does anyone know if those levels I have are really bad? Or only a little bad?

Then I think the baby vitamins are a good place to start. Of course, take them with food--at dinner. That way, you won't feel crappy all day. Not being a medical professional, I would say your levels are kinda bad. The ferritin at 4 is an indication of how much iron you have stored in your body. Did you have this blood drawn after you went on your gluten challenge? If so, was it very long into it? I know you've had iron issues right along, but I wonder if this is making the numbers worse?

[marciab]

ChelsE,

I don't want to alarm you, but those numbers are very low. How is your hemoglobin ? My iron is an 8 and they are concerned. The normal range for iron/ferritin is 10 - 232. My hemoglobin is 11.1 and I have been told this is not good for me either. Of course, I am losing blood on a regular basis too, so we have that to worry about.

I can't believe your doctor just wants you to start taking iron supplements. Maybe because you are young he figures you will bounce back quicker than someone my age.

Can u ask him to do an iron IV ? My doctor did it and I think he would do it again if my numbers were as low as yours. They do have risks though .. they are tough on your liver and kidneys ... but so is anemia.

You can use the same thing I am probably. Baby vitamins and iron supplements are working for me.

I have been so energetic the last couple of days. You may have to get a prescription for the straight baby iron. I did, but my doctor just volunteered to call it in ... We didn't even discuss if I could get it over the counter.

Also, Buffalo meat is the highest source of iron I found. You body will absorb animal iron better than any other type. I tried the vegan method of increasing my iron, despite what my doctor said and found out he was right. You just can't get enough iron this way. I read this but insisted on trying it anyway. My labs convinced me.

Good luck.. Marcia

[floridanative]

The only iron I've had success with is Slow-Fe. I do take Benfiber to counteract the side effects of it however. I started with my stores down at 5 - today the nurse called to tell me it's now at 52. It was at 52 two months ago so I guess it's slow going. I've been on the iron pills for over a year but gluten free only 5 months. The doc wants me to stay on it for a while as she thinks it's a good idea the build the stores way up. Anything from 50-150 is considered 'normal' and not anemic so to answer your question ChelsE, your numbers are too low and you'll have to take iron for a while to bring them up. I'm assuming I have another six months of pills and I've been taking them since last April. Good luck to you. You will get better but it's going to take a while.

[flagbabyds]

i took slow Fe, worked well for me.

spinach and beef w/ oj was wht i had for din every night for like a month to try to get the levels up.

[Ursa Major]

Eating spinach won't help, as it contains high levels of oxalic acid, which counteracts iron absorption. Meaning, it is useless for getting iron.

Red meat is still the best source of iron from food.

Chelsea, your levels are alarmingly low, and something a lot more radical needs to be done than just iron supplementation. When my levels were that bad, I got twice weekly iron injections at the doctor's office, as I had gotten so weak, that some mornings my legs would just buckle under me, and I had to stay in bed. If you aren't at that point yet, you will be soon if nothing is done to bring your levels up FAST.

Also, I don't know who told you that a level of 10 of ferretin is normal. Here are the definitions I read when I got the report to bring to another doctor (and I WILL read my file when given a chance):

Under 20: Definitely anemic

20 to 40: Probably anemic

50 to 100: Possibly anemic

100 to 300: Definitely not anemic

[Mandy F.]

This probably won't be terribly helpful, but I had really low iron in my teens and the docs threatened to put me on IV iron and made it sound really scary. After that, they prescribed an iron supplement that had another vitamin in it (it's been so long I can't remember) that was supposed to help the absorbtion and told me to take it with OJ. So, I'm sure that in itself isn't very helpful, but the pill was a gelcap (like the Advil liquigels) so it was easier to take. I think it was also a stronger dose than the otc pills. I'm sure it's not very helpful without a name brand, but maybe you could ask your doctor if there is a prescription strength gel cap that you can take. Sorry I couldn't be more help

[Guest Robbin]

Chelse, I agree with Ursula, this is way low. Maybe you should ask about iv treatment until those numbers come up a little? You also might be able to tolerate an adult chewable? My oldest son was on a syrup called Incremin (sp?) It tasted bad to me, but he took it like a trouper and I gave it to him only on a full stomach and it really made a difference with him. The vitamin c tip is accurate too. You maybe could eat a full meal, take a supplement and then follow up with some oj? Drink it in a wine glass. That's not a health tip-it just feels nice When you feel yucky, little things can mean a lot. GET BETTER SOON !!! {{{{hugs}}}}

[penguin]

I asked the pharmacist about baby vitamins and she looked at me like I was nuts. I guess I need to talk to the dr today

I bought some prune juice and orange juice and made myself a nice iron cocktail with it last night (prune juice is high in iron and the oj helps it absorb). By the way, I don't reccommend prune juice right before bed if you want to sleep through the night

I swear to god, if my mom were here she would be holding me to the floor forcing me into eating liver. When I had mono she was shoving spirulina shakes down my throat. Yuck!

The anemia explains why I got so flippin' tired so fast when we were moving...

Patti- The blood tests were taken about 1 month into the challenge, last Friday. The last bloodwork before that I had (CBC) was in December. My hemoglobin was 12.4, which is low normal, but still normal. My RBC's were still small and my platelets were still high though. I was really surprised with these results yesterday! Apparently my blood has gotten worse since then I don't know what my hemoglobin was this testing round, since it was an in depth iron test.

Marcia - Thanks for the buffalo meat tip. Maybe I'll mix it with beef and make a meatloaf this weekend.

Thanks for the updates! I'll keep you all posted!

[marciab]

ChelsE,

I'd be right there with your mom. The pharmacist at Walmart had no idea what I was talking about either. I got my prescription baby iron from CVS. But, I did see some Poly Vi Sol with iron at Target yesterday. I was comparing prices. BTW, it is cheaper at Walmart. Both companies keep the baby vitamins in with the kids vitamins. Poly Vi Sol has vitamin "C" in it to help you asbord the iron better.

My doc ordered Niferex (a supposedly extra gentle iron supplement for adults) for me last month, but after 6 days of it I had to stop. I was so bloated and in sooo much pain. I think it was the red dye in it. It took me about 2 weeks to get back to normal.

Oh, and iron is known for causing constipation. I ended up eating my weight in watermelon, etc.

And, Sorry if I am sounding preachy, but I read where liver is very high in iron, but since the liver's function is to flush out toxins, it is best to eat only calf liver. I haven't tried it yet though.

Iron loss can cause you to be light headed too. I almost passed out completely twice this last month.

Aren't you glad I am going through this too ? I've had to do a lot of researched on all of this. Hopefully we can get our iron under control soon.

Did you call your doctor ? Marcia

[penguin]

I called the dr's office but his nurse hasn't called me back yet. My doctor is fantastic but he's in a gigantic practice that's very busy so it's not as speedy as I'd like. I'll take it though, for a good doctor...

I went to walgreens and asked their pharmacist and he came up with a liquid adult iron but the bottle had been opened so he couldn't sell it. He also reccomended going to a compounding pharmacy so they could make it taste better

Up until going on my gluten challenge, I'd never had a C problem. When I was taking iron before, I would hope for that side effect! To no avail though, I just got black D

I refuse to eat liver no matter what animal it comes from because it's a biological coffee filter. Eww. I just can't wrap my brain around it

That and they don't treat calfs for slaughter very nicely, so I won't eat it on principle. That's about as far as my 8th grade PETA indoctrination got...

I don't know why I'm not weak and tired. I'm not even particularly pale. Maybe it's because my body is so used to functioning so undernourished that it's just coping? I've been anemia sickly, and I don't look/feel like that now.

Also, I have several little bruise looking things that are about the size of a shirt button. They just popped up recently, but they look brownish and yellowish (like healing bruises). They don't hurt, and I didn't hit anything or anything like that. They're on my upper arms and upper legs. Anyone know what those are about?

[TCA]

Chelsea,

My daughter had a LOT of anemia issues before finding celiac, evne having blood transfusions for it. She's better now, but the ONLY supplement that didn't make her sick was ICAR. It's pediatric and you have to have a RX. I just talked to the ped today about her going back on it in prep for surgery. He's giving me samples. She was on plain liquid iron too, but it upset her tummy.

[L.A.]

I asked the pharmacist about baby vitamins and she looked at me like I was nuts. I guess I need to talk to the dr today

I bought some prune juice and orange juice and made myself a nice iron cocktail with it last night (prune juice is high in iron and the oj helps it absorb). By the way, I don't reccommend prune juice right before bed if you want to sleep through the night

I swear to god, if my mom were here she would be holding me to the floor forcing me into eating liver. When I had mono she was shoving spirulina shakes down my throat. Yuck!

The anemia explains why I got so flippin' tired so fast when we were moving...

Patti- The blood tests were taken about 1 month into the challenge, last Friday. The last bloodwork before that I had (CBC) was in December. My hemoglobin was 12.4, which is low normal, but still normal. My RBC's were still small and my platelets were still high though. I was really surprised with these results yesterday! Apparently my blood has gotten worse since then I don't know what my hemoglobin was this testing round, since it was an in depth iron test.

Marcia - Thanks for the buffalo meat tip. Maybe I'll mix it with beef and make a meatloaf this weekend.

Thanks for the updates! I'll keep you all posted!

I too have a problem with the iron supplements, and since you did like cream of wheat, i may not be too far off the radar here by suggesting pablum with iron. I have been using it to help my iron levels.

[jerseyangel]

I called the dr's office but his nurse hasn't called me back yet. My doctor is fantastic but he's in a gigantic practice that's very busy so it's not as speedy as I'd like. I'll take it though, for a good doctor...

I went to walgreens and asked their pharmacist and he came up with a liquid adult iron but the bottle had been opened so he couldn't sell it. He also reccomended going to a compounding pharmacy so they could make it taste better

Up until going on my gluten challenge, I'd never had a C problem. When I was taking iron before, I would hope for that side effect! To no avail though, I just got black D

I refuse to eat liver no matter what animal it comes from because it's a biological coffee filter. Eww. I just can't wrap my brain around it

That and they don't treat calfs for slaughter very nicely, so I won't eat it on principle. That's about as far as my 8th grade PETA indoctrination got...

I don't know why I'm not weak and tired. I'm not even particularly pale. Maybe it's because my body is so used to functioning so undernourished that it's just coping? I've been anemia sickly, and I don't look/feel like that now.

Also, I have several little bruise looking things that are about the size of a shirt button. They just popped up recently, but they look brownish and yellowish (like healing bruises). They don't hurt, and I didn't hit anything or anything like that. They're on my upper arms and upper legs. Anyone know what those are about?

Chelse--I get the same side effect as you do from iron suppliments! I, too, hoped for the C and got the awful, black D. (The stuff I share on here !)

I agree completely on the calfs--I don't eat veal or liver of any kind--why eat what the body has already filtered out

The bruises you describe--I had them for years. Especially on the upper legs. When I became severly anemic, I would get them on my forearms from just leaning them on a table.

I can't believe you're not lightheaded--I actually blacked out a few times--was very pale and had no energy. Be careful--especially now when it's hot outside! Don't get up too quick from laying down or sitting--hope the doctor gets back to you soon and the two of you figure out the best way to get more iron into you ASAP!

I also can't help but think that the gluten challenge has something to do with this--that's why I asked you when the blood was taken for the test. Will be interesting to see what happens when you are gluten-free again. But of course don't wait till then to get help for this!!!

[aaascr]

Have you tried Floravital?

from the website:

- "Floravital (Yeast-Free) Iron + Herbs: Provides the same benefits and delicious taste as Floradix Iron + Herbs. Suitable for yeast- or gluten-free diets."

www.florahealth.com

I haven't been retested yet (too soon) but this product does not annoy

my body in any way and I have a ton of food allergies, too.

I know that Whole Foods carries it at a bit lower cost than ordering

it online.

(yeah, no surprise for me either )

Good Luck!

[jennyj]

This is really helpful topic since I too have severe iron deficent anemia. I have to get an iron infusion about every 6 months. I was told by the iron disorders institute not to drink iced tea because it can deplete the body of iron. Also, spinach, like mentioned, does not increase iron levels. Thanks for all the good suggestions.

[Ursa Major]

Chelsea, you may not be feeling too bad yet, because after your iron has plummeted, your hemoglobin takes a while to come down to dangerous levels. Apparently it hasn't yet, but it will!

I was unable to take enough iron supplements to keep my iron levels at an acceptable level (eventually, I was in chronic stomach pain so bad, I couldn't walk upright). I had no problems of any kind (other than a sore butt ) with the iron injections.

Eventually I had a hysterectomy, because bleeding for ten to fourteen days heavily, with only a little over a week in between was causing the iron deficiency. Of course, the bleeding was likely caused by malnutrition, which was caused by celiac disease. So, the bleeding was a symptom, and taking out the uterus was fixing a symptom, not the cause. Still, after a few more injections after the surgery, my ferretin first stayed stable (that took six months), and then slowly went up by one count a month. The last time I had it checked (last fall), it had gone up to 92 (at my worst it was at 4 as well).

I hope your doctor calls back soon! Really, you need either an IV or iron injections initially, because your iron is simply too low to bring up fast enough just with supplementation. You need a boost of energy now! Without enough iron none of your organs (including your brain and heart) get enough oxygen to function properly.

[penguin]

OK, so nobody is going to be happy with what my dr said...

He said for now, since I can't tolerate supplements, to eat large amounts of iron-rich foods, and they'll re-do the iron study every six weeks to see if it's getting any better. Lots of steak and eggs for me! He doesn't feel that it's bad enough yet to warrant IV's and whatnot. Hmm, since I'm on the pill I think I'll skip my period this month so I don't lose any blood.

Based on past experience, I'm pretty good at getting my iron levels up when I'm trying hard to do so.

And my iron hasn't plummetted per se, I've had small cells and whatnot going on a couple of years now. I don't think it's any worse than it had been. Nobody had ever done an iron study before to see why.

I guess I could *try* supplements again and see what happens. Maybe I'll try that florvital and see if I can do that. I'm going to pick up a copy of my labs tomorrow, maybe I misheard her on some of the numbers. If I start feeling crappy in the next few weeks I'll call back and demand some more aggressive treatment.

[penguin]

OK, I have the results from the lab in front of me:

Ferritin 4 ng/ml Expected range: 10-220

IRON BINDING CAPACITY AND IRON AND % SATURATION:

Iron, serum 19 ug/dl Expected range: 35-145

Unsaturated IBC 442 ug/dl Expected range: 155-300

Calculated Total IBC 461 ug/dl Expected range: 250-450

Calculated % Iron Sat 4% Expected range: 20-50

Folic Acid 8.8 ng/ml Expected range: >5.0

Vitamin B-12 277 pg/ml Expected range: 250-1100

So, from what I've read, just simple Iron Deficiency anemia. Easy enough to bring back up

[jerseyangel]

At the risk of sounding like a broken record--I'd bet that when you do go off gluten completely again, your levels will improve