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On & Off Anemia


semsiren

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semsiren Newbie

I was diagnosed with Celiac Disease just under a year ago. I was severely iron deficient at my diagnosis and my gastroenterologist advised me to take an iron supplement. About 6-7 months after my diagnosis I returned to the doctor because I didn't feel like I was getting "better." He ran several blood test and the results all came back normal, including my iron levels. As a result I stopped taking the iron supplement. Now, 2 months later, I went in for a regular check-up and all of my blood tests came back normal except for my iron. My doctor (different from the first 2 visits since I moved to a different state) told me I am anemic again. My question is, why would my iron be fine and then just 2 months later I become anemic again? My diet has remained gluten free and if anything I have made an effort to eat not only gluten free but well balanced meals as well. Please help me figure this out!

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ang1e0251 Contributor

Just because you are gluten-free, it doesn't mean that you are absorbing nutrients in a normal way. I often read posters recommend being in the midrange of normal for vitamin levels for those of us with celiac disease. At some point, you may be able to keep your iron in the normal range through food alone, but not at this point.

It's OK that you supplement iron for now. Your problems could be far worse. Just keep checking your levels from time to time and stay healthy.

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BRUMI1968 Collaborator

Iron is like B12 in that you make stores of it. If you were anemic and then took supplementation, you brought your stores up. So you would test okay until your stores went down again. This is true of B12 as well, and once you run out of stores of B12, you can be in trouble.

I have read just today what kind of iron supplement to NOT take - it is called ferrous sulfate. This is the most dangerous type to take. The better types to take are Carbonyl Iron and chelated iron. The latter two cause less constipation, and have substantially lowered chance of overdose. I don't know if you are a vegetarian or not, but that of course will lower your iron intake. There are other things that substantially prevent absorption: calcium, green tea come to mind. Vitamin C increases absorption so you should take iron with vitamin C.

I think I'm anemic right now which is why I was looking all this up. I feel oxygen starved even though I'm breathing fine; I get exhausted easily, even from walking flat ground, my gums are whitish, etc. I've been anemic before, though some years ago.

Anyway, hopefully that explains why you would test in the normal range while supplementing or shortly thereafter - and why you might need to continue supplementation and research how iron is absorbed and how you can increase your absorption of it.

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BRUMI1968 Collaborator

Yes, there it is. Lowered stomach acid can also cause a decreased absorption of iron. Most folks think they have too much stomach acid, but most Americans have too little. You can test for it, either a home test or the doctor's office, but another method is just to take some Betain HCI with your dinners. Or you can use apple cider vinegar. If you raise the acid in your stomach, you will digest your food better, and absorb more iron and B12 in your small intestine.

I was doing it for a while and it seemed to be helping my digestion; then I started getting indigestion...so stopped. You could give it a try though. when I first saw a nutritionist after being diagnosed he said to do that and enzymes until my system got enough nutrients to start working right again.

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Jestgar Rising Star

Are you female?

Do you have heavy periods?

Do you eat meat?

Do you donate blood?

There are lots of reasons why people become anemic that have nothing to do with Celiac.

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twe0708 Community Regular
Iron is like B12 in that you make stores of it. If you were anemic and then took supplementation, you brought your stores up. So you would test okay until your stores went down again. This is true of B12 as well, and once you run out of stores of B12, you can be in trouble.

I have read just today what kind of iron supplement to NOT take - it is called ferrous sulfate. This is the most dangerous type to take. The better types to take are Carbonyl Iron and chelated iron. The latter two cause less constipation, and have substantially lowered chance of overdose. I don't know if you are a vegetarian or not, but that of course will lower your iron intake. There are other things that substantially prevent absorption: calcium, green tea come to mind. Vitamin C increases absorption so you should take iron with vitamin C.

I think I'm anemic right now which is why I was looking all this up. I feel oxygen starved even though I'm breathing fine; I get exhausted easily, even from walking flat ground, my gums are whitish, etc. I've been anemic before, though some years ago.

Anyway, hopefully that explains why you would test in the normal range while supplementing or shortly thereafter - and why you might need to continue supplementation and research how iron is absorbed and how you can increase your absorption of it.

Since I just popped one in my mouth, can you tell me why ferrous sulfate isn't a good iron supplement to take?

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jkr Apprentice
Since I just popped one in my mouth, can you tell me why ferrous sulfate isn't a good iron supplement to take?

The hematologist told me to take Ferrous Sulfate 3 times daily and surprisingly I did not have any side effects from it. I think it's a good supplement. My hgb and hct looked good after taking it for 3 months and my iron stores came up nicely.

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BRUMI1968 Collaborator
Since I just popped one in my mouth, can you tell me why ferrous sulfate isn't a good iron supplement to take?

I had just read on mercola.com (not all folks like him, granted) that it is an inorganic form and more likely to be o.d.'d on that other forms. He insinuated it had other issues, but did not go into them. O.D.'ing in iron pills generally leads to death, and may children die from it every year - kids die from this every day. So that is why he was making note of it in his bit on iron supplements. Open Original Shared Link.

I suppose I should not have spoken so quickly w/i investigating further. I just found this study that analyzes three types of supplementation and finds FS to be pretty toxic (and the one that I bought to be sure it was not FS was also toxic) ironically depleting villi in the small intestine.

Open Original Shared Link

Good luck!

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Jestgar Rising Star

Just pointing out that the study posted was on non-anemic rats, and doesn't mention doses. Difficult to extrapolate how this may apply to someone taking normal doses of ferrous sulfate while anemic.

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  • 1 month later...
thleensd Enthusiast

Anemia was a huge part of my illness. As a result, I've studied up on iron. My ferritin shot quickly up from 2 to 30 within a few short weeks of going gluten free, but I've had to stay on mild iron. You didn't list any numbers or which tests you're referring to, but a couple of thoughts: the distance between "normal" and "low" can be very slim...one unit or even one decimal off. Also, different labs use different reference ranges, so a low "normal" number to one lab can be "low" at another lab. Also, doctors have different opinions on what numbers "should" be. I tested just at the end of normal range for Vit D, but was told it was normal (with no knowledge of the numbers). A year later, a new doctor put me on Vit D supplements because it was much lower than he would like to see it.

Finally, iron numbers fluctuate. If you test while on a supplement, you test may have slightly elevated numbers! And I'll echo the thoughts above about the possibility you still aren't absorbing properly.

I've had good luck with Florivital by Floridix (one is gluten-free and the other not, and they look nearly identical, so be careful!). It doesn't have a very high dose, but seems to absorb well for me and not upset my tortured GI track!

Good luck.

K

I was diagnosed with Celiac Disease just under a year ago. I was severely iron deficient at my diagnosis and my gastroenterologist advised me to take an iron supplement. About 6-7 months after my diagnosis I returned to the doctor because I didn't feel like I was getting "better." He ran several blood test and the results all came back normal, including my iron levels. As a result I stopped taking the iron supplement. Now, 2 months later, I went in for a regular check-up and all of my blood tests came back normal except for my iron. My doctor (different from the first 2 visits since I moved to a different state) told me I am anemic again. My question is, why would my iron be fine and then just 2 months later I become anemic again? My diet has remained gluten free and if anything I have made an effort to eat not only gluten free but well balanced meals as well. Please help me figure this out!

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Mskedi Newbie

I'm still waiting on my latest bloodwork results to see if I'm still anemic. I've never been in a normal iron range, so I'd be pretty excited if seven months or so gluten-free could change that.

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Gemini Experienced

Anemia was a huge part of my illness. As a result, I've studied up on iron. My ferritin shot quickly up from 2 to 30 within a few short weeks of going gluten free, but I've had to stay on mild iron. You didn't list any numbers or which tests you're referring to, but a couple of thoughts: the distance between "normal" and "low" can be very slim...one unit or even one decimal off. Also, different labs use different reference ranges, so a low "normal" number to one lab can be "low" at another lab. Also, doctors have different opinions on what numbers "should" be. I tested just at the end of normal range for Vit D, but was told it was normal (with no knowledge of the numbers). A year later, a new doctor put me on Vit D supplements because it was much lower than he would like to see it.

Finally, iron numbers fluctuate. If you test while on a supplement, you test may have slightly elevated numbers! And I'll echo the thoughts above about the possibility you still aren't absorbing properly.

I've had good luck with Florivital by Floridix (one is gluten-free and the other not, and they look nearly identical, so be careful!). It doesn't have a very high dose, but seems to absorb well for me and not upset my tortured GI track!

Good luck.

K

I also suffer from on and off again anemia but I have linked it to my thyroid. Hypo-thyroid will cause anemia and I am trying to adjust to a new thyroid supplement (Rx) that I have switched to. I have a compounded form done at a compounding pharmacy to ensure the med is gluten-free. I also do this because I need both T3 and T4.....my thyroid was trashed by undiagnosed Celiac Disease.

I have noticed that I need to eat red meat in my diet and take an iron supplement from time to time. I am post-menopausal and, usually, women in that group do not need to supplement. I have come to the conclusion that I probably do not absorb as well as someone without Celiac Disease, and I also have other autoimmune problems which may contribute to all this. However, I am overall healthy at the moment so don't sweat it too much. I doubt any Celiac heals 100% but because God designed such a wonderful system in our bodies, your whole small intestine doesn't need to work 100% for you to be healthy or recover. My numbers aren't bad now but could be better.....I shoot for optimal range.

My supplement of choice is Floradix also and I was pleased to see someone else recommending it. It is a liquid, which I like as it's easier to absorb and doesn't taste bad at all. It works well but make sure you buy the gluten-free one!

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