Anemia And Other Deficiencies

[ShayFL]

I just got labs back for Vit D and Ferritin (both tested low 4 months ago).

Vit D was 14 and is now right at 28. So I have doubled it, but still below normal. I know what to do here. Higher dose of Vit. D and then retest later.

My Ferritin was 11 a year ago and I got it to 22 and now it is down to 19.

Here is my delima. Just taking more Iron scares me. Iron can be low because you have cancer or a bacterial infection. The body "hides" iron from cancer and bacteria to try to keep them in check. My Mom had thyroid cancer 2 years ago and my sister just had breast cancer 6 months ago. My fear is that if I just start mega dosing on the Iron, I could be feeding a problem (that I do not know I have).

And to get a bizillion tests to try to find a cancer or bacteria seems absurd. Talking about chasing geese.

Anyway, should my ferritin just come up naturally now that I am gluten-free? It has only been 7 weeks for me.

I am trying to eat more iron rich foods: liver, raisins, etc.

Any help at all here......

[trents]

I've been gluten free for almost 5 years now and still have to supplement my iron. I was worried about taking iron routinely because I didn't want to saturate my organs and tissues to toxic levels. I shoud also mention that I am a 57 year old male. Men usually have a probem with too much iron unless there is a specific disease process going on that dictates otherwise. For a while I would only take iron for a coupe of months and then get it checked to guard against overload. It never happened and my doctor said with the Celiac disase there are just some vitamins and minerals I may never absorb normally. He suggested I just stay on the iron indefinitely. He was not worried about overload in my case. I take 50 mg. of elemental iron daily and take it between meals with a vitamin C tablet to increase absorbtion. Iron absorbs better in an acidic environment. Avoid taking it with high calcium meals or calcium supplements and avoid taking it when eating eggs as these things bind with the iron and render the supplementation ineffective. That's why I take it between meals.

[Di-gfree]

I've been gluten-free since 1997. At that time my ferritin was zero. Over 10 years later... I've got it up to 21.3. I also wonder if I'll always be on the low side. My RBC count is also low, so that might have something to do with it. I also wonder if our thyroid conditions have anything to do with it since my doctor mentioned that he's hoping my RBC might normalize if I can get the thyroid regulated.

I don't take iron supplements because I found they were too hard on me. I believe Blackstrap molasses is high in iron; but I'm hesitant to take it since I have problems with Candida. But, I think I'll try taking at least a Tbs. a day, and see what happens.

I don't think I've ever had my Vit. D checked - I should do that. By the way, I always ask my doctor about cancer, but he says nothing in my blood tests indicates anything is amiss. So, I do worry about that, too.

[Joni63]

I just got labs back for Vit D and Ferritin (both tested low 4 months ago).

Vit D was 14 and is now right at 28. So I have doubled it, but still below normal. I know what to do here. Higher dose of Vit. D and then retest later.

My Ferritin was 11 a year ago and I got it to 22 and now it is down to 19.

Here is my delima. Just taking more Iron scares me. Iron can be low because you have cancer or a bacterial infection. The body "hides" iron from cancer and bacteria to try to keep them in check. My Mom had thyroid cancer 2 years ago and my sister just had breast cancer 6 months ago. My fear is that if I just start mega dosing on the Iron, I could be feeding a problem (that I do not know I have).

And to get a bizillion tests to try to find a cancer or bacteria seems absurd. Talking about chasing geese.

Anyway, should my ferritin just come up naturally now that I am gluten-free? It has only been 7 weeks for me.

I am trying to eat more iron rich foods: liver, raisins, etc.

Any help at all here......

Hi Shay,

I also have low ferritin and D. My PCP basically told me to take a multi vitamin, but when I went to the Naturopath she said I need much more than that. She put me on 5,000 units of D. and 750mg (120 elemental iron). I was just retested Thursday and am waiting for the results. She said when the levels are really low, it takes large doses to get the ranges back up in the normal range. My ferriton was 7 and D was 16.

Celiacs just typically have trouble absorbing certain vitamins. I wouldn't worry that it's anything else, especially if all your other bloodwork is fine. It is important to try to get your iron level up though or you could become severely anemic and need I.V.'s to bring your level up. Low iron can also cause breast, stomach and esophageal cancer. High levels can cause liver and breast cancer. It's best to be in a normal range, if possible.

Since Celiacs take wheat products out of their diets we get much less iron on the gluten free diet. I think that's why many of us tend to get lower iron results after going gluten free. Just my opinion, but it seems to make sense.

You can try using cast iron pans. eating Rice Chex (which are iron fortified) and taking a supplement.

I've done all of these things and really hope my results come up. I do feel better so something has changed and it's only been 1 1/2 months.

Oh, my Naturopath also said taking Yellow Dock helps iron absorb in our systems better.

[ShayFL]

Hi Shay,

I also have low ferritin and D. My PCP basically told me to take a multi vitamin, but when I went to the Naturopath she said I need much more than that. She put me on 5,000 units of D. and 750mg (120 elemental iron). I was just retested Thursday and am waiting for the results. She said when the levels are really low, it takes large doses to get the ranges back up in the normal range. My ferriton was 7 and D was 16.

Please share your results with us Joni. I want to know!!

I was taking Solgar's Gentle Iron, but I stopped because I got too worried. That is probably why it dropped from 22 to 19. I have read that Florivital is gluten free and good iron supplement.

I was only taking 2500 IU of Vit D. I have now doubled it and hope in a few months to be in the "normal" range or better still "optimal".

[Joni63]

I will definately let you know!

I took Florivital for a short time. I just can't take liquid supplements. It tasted like drinking from a tin can - awful. Not as bad as the cod liver oil - never again!

I don't think the Florivital had many mgs of iron though - maybe 20mg or something. Probably not enough to help much when serum ferritin is so low, but better than nothing if you know you can handle it.

[Ursa Major]

I would definitely not worry if taking iron would cause cancer. Having low ferritin is linked to many problems, I would be much more worried about that.

I think you would do well to ask your doctor for iron injections until your iron is up to normal levels. And then take iron supplements to keep it there (a diet rich in meats will also be beneficial, as meat has lots of iron).

As for vitamin D, I have found that taking cod liver oil is the best (and most natural) method of bringing it up fairly quickly. I take Carlson's cod liver oil because it has been shown to be the best product out there, and it doesn't taste gross (otherwise I wouldn't take it), it has a lemon taste.

[ShayFL]

I just got some of the Carlson's lemon last week. Will start taking it tomorrow. I was using up what I had of other vitamin D.

The vit D I was using was working, I just wasnt taking enough. So Im upping it!

The Solgar was bringing my levels up too...from 11 to start to 22. Then I stopped taking it and it is down to 19. I should just take more of that as well. The Solgar says "wheat" free, but not specifically "gluten" free, so I need to call and check on that. Unless anyone else knows if it is gluten-free??????

O.K...injections scare more than the other stuff....LOL Ill try taking more Iron for awhile and then reevaluate. But thank you for sharing. I knew about the injections.....just call me chicken.

[Ursa Major]

I just got some of the Carlson's lemon last week. Will start taking it tomorrow. I was using up what I had of other vitamin D.

The vit D I was using was working, I just wasnt taking enough. So Im upping it!

The Solgar was bringing my levels up too...from 11 to start to 22. Then I stopped taking it and it is down to 19. I should just take more of that as well. The Solgar says "wheat" free, but not specifically "gluten" free, so I need to call and check on that. Unless anyone else knows if it is gluten-free??????

O.K...injections scare more than the other stuff....LOL Ill try taking more Iron for awhile and then reevaluate. But thank you for sharing. I knew about the injections.....just call me chicken.

You know that you may only need ONE SINGLE injection to bring the ferritin up to an acceptable level? It will go into your butt, so not too bad.

I think having one single little poke shouldn't be too bad, right? If then you can manage to keep it there, and slowly bring it up higher from where it will go (probably around 25 or 30), you would likely feel much more energetic as a result.

[ShayFL]

Oh Im not afraid of a "poke". Im arms look like a drug addicts already. I worry about side effects:

What are the side effects?

The side effects of iron injections may

include:

l A metallic taste in the mouth

l Low blood pressure

l Fever and shivering

l Injection site reactions

l Feeling sick

Risks?

Iron injections can occasionally cause

you to have a drop in blood pressure

and rarely to have a serious allergic

reaction. We will monitor you carefully

and check your blood pressure before,

during and after your treatment.

[Ursa Major]

You know what? I had NONE of those side effects (and things easily effect me), other than a sore butt from twice weekly injections for over a year (which barely kept my levels up at 20, but that was because of severe bleeding every ten days)!

They have to give you those warnings, but I have never heard of anybody actually having those problems. Plus, they don't like you getting those, as they are expensive.

[ShayFL]

That is good to know you had no problems. I will talk to my Dr. about it the next time I go.

[Joni63]

Shay and Ursa,

I'm also afraid about all the side effects I've read about iron injections. Although an almost instant fix sounds like a good thing right now, especially when they drew about 12 viles of blood last week to get all my tests done (and I have a nice bruise to show for it). I'm sure that was worse than a needle in the butt!

[Ursa Major]

Shay and Ursa,

I'm also afraid about all the side effects I've read about iron injections. Although an almost instant fix sounds like a good thing right now, especially when they drew about 12 viles of blood last week to get all my tests done (and I have a nice bruise to show for it). I'm sure that was worse than a needle in the butt!

When I needed the iron injections, and got dreadful stomach cramps from the massive amount of iron pills I took (which did no good at all), my doctor (who obviously never ordered those injections for anybody before) was very concerned about the side effects, too.

But I insisted on having them, and she gave in. I felt better instantly, and never had ANY of the side effects. And really, I have never heard of anybody who did.

My sister in Germany regularly gets iron IVs (she won't go for the long-term fix of going gluten-free, since her bloodwork was negative). She doesn't get side effects, either. In fact, doctors in Germany would never mess with iron supplements with extremely low iron, they'd do an iron IV instantly, and do iron shots regularly until the problem is fixed.

There they don't seem to have that fear of iron injections!

[fedora]

I take floravital liquid iron and vit b supplement between meals. I like the way it tastes. I take it with a little chicken or fish(any fish, poultry, pork, or beef will do) and vit c. This helps absorption.

Tannins(coffee and tea), phytates(in legumes and whole grain cereals),calcium, and phosphorus, fiber all inhibit iron absorption.

I JUST took nutrition and we studied this.

[Di-gfree]

In fact, doctors in Germany would never mess with iron supplements with extremely low iron, they'd do an iron IV instantly, and do iron shots regularly until the problem is fixed.

There they don't seem to have that fear of iron injections!

Ursa, Once the iron problem is fixed, you must stop the injections then? And, does the problem stay fixed forever, or does the iron slowly start depleting again? Thanks.

[Ursa Major]

Ursa, Once the iron problem is fixed, you must stop the injections then? And, does the problem stay fixed forever, or does the iron slowly start depleting again? Thanks.

Well, lets just say in my sister's case it won't be fixed until she gives up gluten or dies of cancer like our mother (I hope she'll see the light before it is too late). So, she'll have to keep getting iron shots indefinitely.

But in the case of a person with celiac disease on the gluten-free diet, once the villi heal and we can absorb iron again, the problem would be fixed. Once your iron starts to slowly go up on its own, there will be no more need for supplementing with iron, whether it be in pill form or injections.

My iron is now at the optimal level at 105, and that is where it has been for a couple of years now. I take vitamins without added iron.

[confusedks]

I don't want to be a downer, but I'll just give my experience.

I got severely anemic, my ferritin got down to 0. My hematologist said he had never ever seen numbers that low in his career. He totally freaked out. I went the next day and got Iron IV's because there was no way I could take oral iron. It hurt my stomach (severe pain) for HOURS after I would take it.

I have to get iron IV's every 6 months or so. My ferritin goes up to an acceptable range, then in 6 months it drops to extremely low again. We're not sure if I have Celiac, but I definitely do have a co-infection of Lyme Disease...babesia. It lives off of iron, so it's fairly common to have anemia as a symptom. We're treating the infection, but it takes a while.

My hematologist only gives me iron IV's if my ferritin is below 4. As of a month ago, it was 19, so in about another month, we'll re-check it and I'll probably get more IV's.

[Ursa Major]

I don't want to be a downer, but I'll just give my experience.

I got severely anemic, my ferritin got down to 0. My hematologist said he had never ever seen numbers that low in his career. He totally freaked out. I went the next day and got Iron IV's because there was no way I could take oral iron. It hurt my stomach (severe pain) for HOURS after I would take it.

I have to get iron IV's every 6 months or so. My ferritin goes up to an acceptable range, then in 6 months it drops to extremely low again. We're not sure if I have Celiac, but I definitely do have a co-infection of Lyme Disease...babesia. It lives off of iron, so it's fairly common to have anemia as a symptom. We're treating the infection, but it takes a while.

My hematologist only gives me iron IV's if my ferritin is below 4. As of a month ago, it was 19, so in about another month, we'll re-check it and I'll probably get more IV's.

Seriously, he should NOT wait until it goes to 4, that is insane! When my iron was 4 I was unable to function at all, most days I couldn't even get out of bed. It is also very bad for your heart when the iron is so low, as it needs oxygen to function. And the iron carries the oxygen through your body.

You should likely get an iron injection every week to KEEP the iron at an acceptable level, rather than bringing it up to normal every six months and then letting it go back down to nearly zero again. What a rollercoaster that must be for you! You feel strong for a couple of weeks, very likely, and then your energy slowly seeps out of you.

Personally, if I was you, I would tell that hematologist to shape up, or you'll find a new one.

[Guest hightop girl]

My experience is a little like confusedks... My ferritin was 2 for almost a year. During that time I was still functioning, and I actually ran a marathon, although I was warned against it and the medics kept asking if I was ok. Apparently it didn't look like running I had two IV iron packs and my ferritin and other levels came back to normal. Now I am checked every 6 months and as soon as it drops out of the normal range I go back for the IV again. The real issue is the cause, not the cure. The cure is getting some form of iron. In my case, no amount of iron supplements or iron from my diet will be absorbed. I have several autoimmune issues and this is another one. I do not absorb B12 or iron, so I give myself injections of the B12. The celiac problems contribute to my anemia, but a gluten free diet is not the complete cure. The gluten free diet helps my autoimmune problems and helps me absorb other nutrients, but not the iron or B12. I went in yesterday for another check up, and my ferritin is starting to drop (from 116-92) and my B12 is just barely in the normal range. I am training for a 1/2 ironman that is in 2 weeks, and my hemotologist said that the intense training might cause my levels to begin to drop a bit early.

[TrillumHunter]

This has been an interesting thread for me. I just had an endo/colonoscopy to look for causes of my anemia. My ferritin was down to four two years ago but with 400mg of iron a day I was able to get it up into the 60's I think. But that is still pretty low, right? Now, I'm having stomach issue (new for me) and it's back down into the teens and I FEEL it! Maybe I will push for more support for my iron issue. The hematologist Isaw said because I could show a rise in iron I didn't need IV support. But he also said I did not have a malabsorption problem so.....

This thread was so, so helpful for me!! I wonder what I would feel like if my ferritin levels were 100?

[Jestgar]

sigh

I take 800mg of iron a day to keep mine at 2

tired of being tired

[MaryJones2]

At my lowest point my ferritin was 3. It's now up to 60 but my doctor (who is just the best) thinks that anything below 80 should be addressed with a supplement. If your ferritin is that low you can't really get it back up without a supplement and even then it takes months to get it up to an acceptable level. The iron shots/IVs are a last resort and are sometimes needed to get a little back in your system and then you can bring it up with a supplement.

I don't eat meat so taking a supplement is necessary and I haven't had any negative side effects at all. There are several different kinds of iron supplements and some people have to try a few to find the right one for them. Nausea and constipation are usually the biggest complaints.

[Di-gfree]

Well, lets just say in my sister's case it won't be fixed until she gives up gluten or dies of cancer like our mother (I hope she'll see the light before it is too late). So, she'll have to keep getting iron shots indefinitely.

But in the case of a person with celiac disease on the gluten-free diet, once the villi heal and we can absorb iron again, the problem would be fixed. Once your iron starts to slowly go up on its own, there will be no more need for supplementing with iron, whether it be in pill form or injections.

My iron is now at the optimal level at 105, and that is where it has been for a couple of years now. I take vitamins without added iron.

Thank you for answering my questions. When I went back in 97 for my second biopsy, my villi had healed (was healing); and I've remained gluten-free, so I'm hoping I'm still healed... Now, even with my villi healed, I've gone from 0 ferritin to only around 21 (as my high). I guess something else is amiss (which I'm investigating and (sigh) working on). I'm thinking it's the enlarged RBC's (low RBC); but why I have that condition is what I'm trying to figure out.

I too found, like others here, that iron supplements are constipating - which I don't need! I brought up iron injections to my doctor before, and all he said was it gives you a sore... bum. So, I didn't detect any urgency, or enthusiam, about it from him. I can't imagine having such low iron for over a decade, or probably more, is something to take lightly, though. I'm considering injections again, though. Thanks again; and this is a great topic. It's surprising how many of us have chronic low iron.

Oh, I'm not sure how recent your message is about your granddaughter; but I hope she's doing ok!

[confusedks]

Seriously, he should NOT wait until it goes to 4, that is insane! When my iron was 4 I was unable to function at all, most days I couldn't even get out of bed. It is also very bad for your heart when the iron is so low, as it needs oxygen to function. And the iron carries the oxygen through your body.

You should likely get an iron injection every week to KEEP the iron at an acceptable level, rather than bringing it up to normal every six months and then letting it go back down to nearly zero again. What a rollercoaster that must be for you! You feel strong for a couple of weeks, very likely, and then your energy slowly seeps out of you.

Personally, if I was you, I would tell that hematologist to shape up, or you'll find a new one.

Well, I am exhausted all the time. It makes no difference in my symptoms, whatsoever. That is the main reason we don't do iron injections. Also, if insurance doesn't cover them (which they don't unless you're out of range), then it costs around $250 per IV...and that adds up really fast.