Re: Iron-again

[Guest guest]

Alyssa, just passing on what it says at www.breakingtheviciouscycle.info Katy

The SCD™ Knowledge Base

Iron Supplements

Elaine writes:Pleeeeeze do not get vitamins with iron; they encourage all kinds of infections especially in the gut, and iron has had much research done on it re other diseases. No oral iron if you can help it. Just eat the liver pate and if you like liver, eat it at least once a week. Now, now, Marilyn and Colleen, no remarks.

Seth writes:Iron levels and anemia is a tricky subject. Anemia can be caused by many factors, low iron levels being only one of them. Poor iron levels can be caused by a lot of different things as well. For one, the body sequesters iron and hides it when you have an infection. If the ideas behind BTVC are correct, and I think they are, then that means those of us with IBD have an ongoing infection. So low levels of iron may be from bleeding (which a lot of us IBDers suffer from), malabsorption, or in many cases the result of the body trying to hide the iron stores from infectious bacteria.

Taking oral iron, in my experience, is not a great idea. Iron supplement have always caused me GI problems, pain, cramping, etc. Iron can be very harsh on the gut and may catalyze oxidative reactions which can damage the surface of the intestines. Furthermore, many pathogens thrive on iron - and by taking oral iron you may be adding to the bacteria overgrowth problem that the SC Diet is trying to quell.

Iron shots (which I had when I was younger) are painful, but at least bypass the problem of iron on the gut.

There are certain supplements you can take to help absorb iron better. For one, Vitamin C binds to iron in food and helps facilitate the transportation of iron across the intestines into the bloodstream. Lactoferrin, a protein the body uses to bind to iron, can also be useful if taken by supplement. It binds tightly to iron, keeping it from catalyzing oxidative reactions, keeping it away from pathogenic bacteria, and also helps the body absorb the iron. Lactoferrin supplements can be expensive.

Finally, having low levels of iron, as long as it is not impacting your energy levels, is not a bad thing. High iron levels have been implicated in heart disease - whether this has anything to do with infections, which I think it does, is controversial. But nonetheless, having more iron is not good when it comes to heart disease. We have known that women seem to be protected from heart disease until they hit menopause. It was always thought that estrogen was the protecting factor. However, researchers recently found that this was not the case. Women on hormone therapy after menopause were not protected. Now the current thinking is that it is the menses that lead to lower levels of iron that protects woman from heart disease. So after menopause and the menses stop, iron levels build back up and woman are at risk again.

So my non-medical advice would be to not worry about iron supplementation unless it is causing anemia and interfering with your energy levels, etc.

From: http://www.orst.edu/dept/lpi/infocenter/minerals/iron/iron.html#ref16

"During an acute inflammatory response, serum iron levels decrease while levels of ferritin (the iron storage protein) increase, suggesting that sequestering iron from pathogens is an important host response to infection (16). Despite the critical functions of iron in the immune response, the nature of the relationship between iron deficiency and susceptibility to infection, especially with respect to malaria, remains controversial. High-dose iron supplementation of children residing in the tropics has been associated with increased risk of clinical malaria and other infections, such as pneumonia.

16. Beard, J.L. Iron biology in immune function, muscle metabolism, and neuronal functioning. Journal of Nutrition. 2001; volume 131: pages 568S-580S."

And.. if that isn't enough information, Ben has kindly forwarded this link to the list. If you scroll down, you'll come upon the sentence, "Use with caution in Inflammatory bowel disease such as ulcerative colitis or Crohn's disease."

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[Guest guest]

Can you get iron infusions? Pre-SCD, iron pills did nothing for me (except upset

my system), so I would get a series of IV iron infusions. They bypass the gut,

and boost your iron levels much faster.

Holly

Crohn's

SCD 12/01/08

>

> Why is iron being illegal such a big deal? Didn't Elaine always say to

> take medication if needed, and don't worry about the illegals? So if

> meds with illegals are no problem, then why is iron?

>

> And please don't say that it can be combated just as easily by eating

> liver. Because I'm supposed to take one iron pill every day, which

> amounts to 47 mg every day. In order to get that much iron from liver,

> I would have to eat 1lb, 3 oz of liver EVERY DAY. (see

http://www.itmonline.org/arts/iron.htm)

> I'm sorry, that is just not doable.

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC April 2008, diagnosed Sept 2008

> SCD June 2009 (restarted)

> No meds =)

>

[Guest guest]

Lactoferrin, a protein the body uses to bind to iron, can also be useful if taken by supplement. It binds tightly to iron, keeping it from catalyzing oxidative reactions, keeping it away from pathogenic bacteria, and also helps the body absorb the iron. Lactoferrin supplements can be expensive.So if I take this supplement with my iron supplement, will it be okay? Or better, anyways? Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

Hi Alyssa,

What type of iron are you taking?

Sky

To: BTVC-SCD Sent: Thursday, 27 August, 2009 9:34:02 AMSubject: Re: Re: Iron-again

Can you get iron infusions? Pre-SCD, iron pills did nothing for me (except upset my system), so I would get a series of IV iron infusions. They bypass the gut, and boost your iron levels much faster.

My doctor doesn't want to do injections or infusions. And frankly, after reading that story that Gay posted about someone almost DYING from iron infusions, I'm not too keen on it either.

Pour Dieu, pour terre,

Alyssa 15

UC April 2008, diagnosed Sept 2008

SCD June 2009 (restarted)

No meds =)

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[Guest guest]

Hi Alyssa,

What type of iron are you taking?

Sky

To: BTVC-SCD Sent: Thursday, 27 August, 2009 9:34:02 AMSubject: Re: Re: Iron-again

Can you get iron infusions? Pre-SCD, iron pills did nothing for me (except upset my system), so I would get a series of IV iron infusions. They bypass the gut, and boost your iron levels much faster.

My doctor doesn't want to do injections or infusions. And frankly, after reading that story that Gay posted about someone almost DYING from iron infusions, I'm not too keen on it either.

Pour Dieu, pour terre,

Alyssa 15

UC April 2008, diagnosed Sept 2008

SCD June 2009 (restarted)

No meds =)

Find local businesses and services in your area with Yahoo!7 Local. Get started.

[Guest guest]

Hi Alyssa,

What type of iron are you taking?

Sky

To: BTVC-SCD Sent: Thursday, 27 August, 2009 9:34:02 AMSubject: Re: Re: Iron-again

Can you get iron infusions? Pre-SCD, iron pills did nothing for me (except upset my system), so I would get a series of IV iron infusions. They bypass the gut, and boost your iron levels much faster.

My doctor doesn't want to do injections or infusions. And frankly, after reading that story that Gay posted about someone almost DYING from iron infusions, I'm not too keen on it either.

Pour Dieu, pour terre,

Alyssa 15

UC April 2008, diagnosed Sept 2008

SCD June 2009 (restarted)

No meds =)

Find local businesses and services in your area with Yahoo!7 Local. Get started.

[Guest guest]

Alyssa, are you able to cook in cast iron pans? Your body could pick up some iron from those. Katy

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[Guest guest]

Alyssa, are you able to cook in cast iron pans? Your body could pick up some iron from those. Katy

____________________________________________________________

Click here for help eliminating your debt.

[Guest guest]

Alyssa, are you able to cook in cast iron pans? Your body could pick up some iron from those. Katy

____________________________________________________________

Click here for help eliminating your debt.

[Guest guest]

What type of iron are you taking?Ferrous sulfate. Although I'm not taking it at this moment, because I still have no idea what to do. I feel like I'm getting pulled in a hundred different directions. Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

Alyssa..

Have they done a complete iron panel?

How low is your Iron anyway?

What about blood counts?

What is your Ferritin level (that's what they really want to look at)

The body hoards iron in presence of inflammation.

Feed the body Iron, the bacteria feast on it more. It's a vicious cycle in of

itself.

With inflammatio- iron goes low, ferritin shoot straight up. Treat the

inflammation ferritin goes down.. iron stabilizes.. can still be a bit low but

not enough to warrant supplementation..

I am against iron..

But, yeah... soon I'll be shot down for saying that.

Jodi

[Guest guest]

As far as I am concerned Iron supplements reck the insides so bad and is painful I will never take any iron supplement again.

___________________________________________________Loving Care Gay Surgery '75, CD '94,SCD '97, No meds. '98 SCDâ„¢Stores: http://www.SCDiet.net/ Moderator Indy, IN

Breaking The Vicious Cycle by Elaine GottschallTell me where you live to find SCD Pals, Drs. how

long on the SCDiet.

Put in Subject: SCD or I may not see your post to me.

I am against iron.. But, yeah... soon I'll be shot down for saying that. Jodi

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[Guest guest]

What is your Ferritin level (that's what they really want to look at)I think it was one, last time they checked. Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

What is your Ferritin level (that's what they really want to look at)I think it was one, last time they checked. Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

What is your Ferritin level (that's what they really want to look at)I think it was one, last time they checked. Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

Alyssa..

I'm a bit confused.

Your Ferritin was 1?

If so, I would have to see your other values..

You should read a bit about Ferritin and Anemia and the book Life Without Bread.

Iron is one of the last things to stabilize. This takes time.

Luckily though, if one has to go on Iron for any reason today there are much

less caustic versions on the market for IV's and such. I cannot say the same

for iron pills IMO.

Jodi

[Guest guest]

Alyssa..

I'm a bit confused.

Your Ferritin was 1?

If so, I would have to see your other values..

You should read a bit about Ferritin and Anemia and the book Life Without Bread.

Iron is one of the last things to stabilize. This takes time.

Luckily though, if one has to go on Iron for any reason today there are much

less caustic versions on the market for IV's and such. I cannot say the same

for iron pills IMO.

Jodi

[Guest guest]

In my peri-menopausal years I bled so much I was very short of iron

and my doctor added iron to my regular weekly B12 shots. As small as

they can grind it, the iron still was like little rocks and boy could

I feel them going in! DH, who gives me my shots, said it was hard to

push, too. However, as an intra-muscular shot, I had no gut troubles

at all with them and of course this would also bypass any infusion

problems. It's been almost 14 years since I needed these so I don't

remember what type of iron it was, but it sure helped keep my test

levels up with no other problems except sometimes a little bruising.

(Of course I was happy when I no longer needed them, too!)

[Guest guest]

In my peri-menopausal years I bled so much I was very short of iron

and my doctor added iron to my regular weekly B12 shots. As small as

they can grind it, the iron still was like little rocks and boy could

I feel them going in! DH, who gives me my shots, said it was hard to

push, too. However, as an intra-muscular shot, I had no gut troubles

at all with them and of course this would also bypass any infusion

problems. It's been almost 14 years since I needed these so I don't

remember what type of iron it was, but it sure helped keep my test

levels up with no other problems except sometimes a little bruising.

(Of course I was happy when I no longer needed them, too!)

[Guest guest]

In my peri-menopausal years I bled so much I was very short of iron

and my doctor added iron to my regular weekly B12 shots. As small as

they can grind it, the iron still was like little rocks and boy could

I feel them going in! DH, who gives me my shots, said it was hard to

push, too. However, as an intra-muscular shot, I had no gut troubles

at all with them and of course this would also bypass any infusion

problems. It's been almost 14 years since I needed these so I don't

remember what type of iron it was, but it sure helped keep my test

levels up with no other problems except sometimes a little bruising.

(Of course I was happy when I no longer needed them, too!)

[Guest guest]

Your Ferritin was 1?Yup. They said that's low. I don't know my other values really, but I think my doc really wants me to take iron and she's a good friend, so I don't want to get on her bad side by arguing with her. Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

Your Ferritin was 1?Yup. They said that's low. I don't know my other values really, but I think my doc really wants me to take iron and she's a good friend, so I don't want to get on her bad side by arguing with her. Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

Your Ferritin was 1?Yup. They said that's low. I don't know my other values really, but I think my doc really wants me to take iron and she's a good friend, so I don't want to get on her bad side by arguing with her. Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)No meds =)

[Guest guest]

I doubt that's very common. For one, they have safer forms of iron then they

used to (my last infusions used Venofer). Second, they give you a small test

dose to make sure your body is okay with it. And third, they shoot you up with a

bunch of benadryl just in case. Oh, and I have a fourth ;-). I had my infusions

at a chemo center, and saw the nurses respond to someone who suddenly couldn't

breathe. Scary stuff, but I saw they very skilled in handling the situation

should it arise. With any luck though, I won't need infusions again!

Holly

Crohn's

SCD 12/01/08

>

> > Can you get iron infusions? Pre-SCD, iron pills did nothing for me

> > (except upset my system), so I would get a series of IV iron

> > infusions. They bypass the gut, and boost your iron levels much

> > faster.

>

> My doctor doesn't want to do injections or infusions. And frankly,

> after reading that story that Gay posted about someone almost DYING

> from iron infusions, I'm not too keen on it either.

>

> Pour Dieu, pour terre,

> Alyssa 15

> UC April 2008, diagnosed Sept 2008

> SCD June 2009 (restarted)

> No meds =)

>

[Guest guest]

I hate to beat a dead horse but I walked around with a hemoglobin of 3.0 and everything else low on SCD--the doctor said it was probably too low to build up with just food.

 

I refused the last transfusion.  Someone posted about repliva 21/7 which has two types of iron, vitamin C, B12 and folic acid.  In five months, my iron was 13.6 according to the new doctor.  My regular doctor said it was 10 so I have to keep taking them.  They are prescription and much easier to tolerate than the OTC type you mentioned.  They are 32$ a month.  It's 21 days on and 7 days for absorption, purple and pink kind of like birth control pills.  It's worth it to get everything straightened out then you can maintain it naturally if that's possible.  No reason to feel pulled in every direction.  You don't want to get to the point of chronic blood transfusions.  It's only an issue when you have to go to the ER and get admitted everytime.  You don't want to go there.  Just take the iron pills because it's prescribed and it's common sense imho.  The goal is to let nothing interfere with your life.  I slept all the time, was cold all the time and no idea why.  You sound young, if you are ok besides the iron, take the iron and keep on with scd until you feel better.  There is a generic with less fillers called Pruvate 21/7.  That's what I take now because I can't get Repliva.  I have to because I can't seem to maintain it on my own.

 

Good luck, it's prescribed.  It's temporary and better than any alternatives.  I had acute cd in my stomach in 2005 (not now) and they are easily tolerated.  Brings it up fast and drink lots of grape juice or other vitamin C with it--during the day.  I don't see the confusion over it since low iron affects your entire life.

 

Good luck,

Debbie 40 cd

scd originally 12-05 and I'm not current but I have to take the yogurt and I also have to stay pretty close to SCD or I feel myself going down again.  Trying different things but I don't stray far without having symptoms.

 

I doubt that's very common. For one, they have safer forms of iron then they used to (my last infusions used Venofer). Second, they give you a small test dose to make sure your body is okay with it. And third, they shoot you up with a bunch of benadryl just in case. Oh, and I have a fourth ;-). I had my infusions at a chemo center, and saw the nurses respond to someone who suddenly couldn't breathe. Scary stuff, but I saw they very skilled in handling the situation should it arise. With any luck though, I won't need infusions again! HollyCrohn'sSCD 12/01/08>

> > Can you get iron infusions? Pre-SCD, iron pills did nothing for me > > (except upset my system), so I would get a series of IV iron > > infusions. They bypass the gut, and boost your iron levels much

> > faster.> > My doctor doesn't want to do injections or infusions. And frankly, > after reading that story that Gay posted about someone almost DYING > from iron infusions, I'm not too keen on it either.

> > Pour Dieu, pour terre,> Alyssa 15> UC April 2008, diagnosed Sept 2008> SCD June 2009 (restarted)> No meds =)>