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Iron Deficiancy Anemia


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#1 Adalaide

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Posted 04 July 2013 - 08:24 AM

So I've been beyond anal retentive about my diet for what feels like forever. When I was diagnosed with celiac I made the doctor do blood tests to see if I needed to be taking any sorts of vitamins. Everything came back normal with the "normal" being borderline anemic. I've had the problem since I was a teenager, I thought nothing of it. Doctors told me I would probably actually become anemic during my period, and I'm sure I do because I crave meat like a crazy lady, but I've never been concerned. My tests came back the same on iron last summer after I had to give up a bunch more foods and was deficient in folic acid.

 

I've tried many times over the years to take a regular multi-vitamin but they have always made me sick as a dog. It took a long time for me to figure out that the reason this happens is because of the iron. Finally when I figured it out I was just thankful that I have only ever been borderline on being anemic. I found a gummi that is iron free and has my folic acid in it and have been quite happy that way.

 

I thought nothing of it yesterday when a new doctor wanted to test some things. (Other than being shocked that a doctor initiated this rather than me pushing and pushing for tests and me getting eyerolls and resistance every step of the way.) I was surprised when I got a rather late (for a doctor's office) phone call at 7 last night. The nurse told me that I am anemic and to start taking 325 mg of ferrous sulphate (it must be this and not some other type of iron supplement, she seemed adamant) 3 times a day, asap. I should be able to see my test results online but I imagine that the reason I can't yet is that it was just too late and I probably won't see them until Monday. I'm wondering just how low I was! (Not knowing is driving me batty now. I should have asked.)

 

I found a supplement last night so I could start taking it right away. (Perks of living in a large city, I can find most anything gluten free immediately!) The problem is, I'm already sick from it. I also don't understand why now. When I was so damaged a doctor did a biopsy when I was being scoped for a reason unrelated to diagnosing celiac because he saw physical damage to my intestine, I was absorbing things fine. Now, suddenly I'm anemic. The nurse on the phone told me if I don't do well on pills I'll have to start transfusions. I guess my tests were bad, really bad. I'm not thrilled. <_<

 

I'm just ranting because for all I'm making progress (and I am!) it seems like I keep having setbacks too. And feeling like I could vomit any second while wondering how long it will be til I stop pooping doesn't put me in a good mood. :ph34r: :P


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


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#2 1desperateladysaved

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Posted 04 July 2013 - 08:43 AM

I had a dip in iron levels after changing my diet.  They are back up.  Taking your supplements just after a meal is supposed to help keep tummy calm. I haven't had tummy issues with it.  I take a natural variety of iron.  Currently I take reacted iron by Ortho Molecular Products which I get through my health practitioner.

 

D


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#3 kareng

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Posted 04 July 2013 - 09:19 AM

Those iron pills can be hard to take. I would wait until Monday and insist on talking to the doc. How low are they really? Is he looking for a reason they are that low? Extra heavy periods, ulcer, etc.

Google lists of iron rich foods and start eating them. Add a B12 under the tongue. Do not eat iron rich foods with calcium. Skip your glasses of milk for a while. They interfere with absorbing iron. I was able to up my levels this way because I couldn't take the iron pills.


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#4 Pegleg84

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Posted 04 July 2013 - 09:35 AM

Ferrous sulphate has more iron, but its harder on the stomach. May be you can talk to your doctor about switching to ferrous gluconate, something easier to absorb, and just take it more frequently? Taking it with vitamin c is supposed to help absorption. 

But ditto on waiting to know the actual results. Your new doctor's "standard" for low iron could be different than your old doctor. You don't want to put more iron in your body at once than you need.

 

My iron was a bit low when I first saw my new doc, and she put me on Ferrous fumerate (which has the highest concentration of iron) for a while. I really should still be taking it once a week or something just to keep my levels steady. Have to get my bloodwork done again still (when I have time) so we'll see how it looks.

 

In the meantime, eat lots of iron rich foods. Kale is my best friend.

Don't freak out! I think a lot of us will always be borderline anemic (raises hand).

 

Peg


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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#5 Adalaide

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Posted 04 July 2013 - 09:46 AM

Believe me, if I could add more iron rich foods I would. The list of foods though reads pretty much as a list of things I either can't or shouldn't eat because of one or another medical reasons. I have no desire to give up being a functioning human being for food, even if that food is to "treat" a medical condition.

 

I do know not to take certain things with milk. I won't give up milk. I think I've said this before, but it is my line in the sand. Barring a true allergic reaction to it I will. not. give. up. milk. Besides, it is a very healthy food and depriving myself of something that healthy and possibly creating a new deficiency with long reaching consequences is not on my lists of things to do. My stance has always been diet over supplements, and while I've had to resort to folic acid and now it looks like iron, I see no reason to go there with calcium. I only go there when absolutely forced.

 

I have seen that it is better absorbed with vitamin C. I have been through a list of foods high in vitamin C trying to pick out what I can and can't eat. That was fun times. <_< I'm pretty much down to guavas and yellow/red peppers that are super high in it that I can eat. There are plenty of other things that have fair amounts of it on my list, but none nearly so high. I'll resort to those when I can't stand to look another pepper or guava in the face. I'm not sure about this that or other kinds of iron, the nurse was adamant about the type, that it was what the doctor specifically said. I imagine I can try to call back tomorrow but I don't expect anyone with a "real" job is passing up this opportunity for a long weekend. I wouldn't!

 

BTW: I'm not freaking out. I'm just pissy. :P One of those days I guess.


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"You don't look sick or anything"

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#6 cyclinglady

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Posted 07 July 2013 - 04:59 PM

I'd call in for the results.   What exactly did they test for?

 

A low hemoglobin is the definition of anemia.  I have two different kinds.  The first is low Ferritin levels (iron stores) as a result of celiac disease.   All my other "iron" levels are okay.  The second anemia is genetic and it's Thalassemia.  Basically, little red blood cells that has caused me to be just under the range of good hemoglobin all my life!  The danger of this anemia is doctors prescribing iron to bring up hemoglobin levels.  It won't work.  Tiny blood cells will not improve, hemoglobin levels won't improve and patients can get an iron overload.

 

My anemia did drop very dangerously low last year when I was experiencing 30 day periods (thanks, perimenopause).  My levels were under an 8.  I had a hard time catching my breath just talking!  I'm back to my normal low levels of hemoglobin, but am taking iron supplements to improve my Ferritin level as I just can't seem to hold on to iron (thanks, celiac disease).

 

I haven't had a hard time taking iron.  I take it with a vitamin C supplement rather than relying on just food (though I eat plenty of Vit. C rich foods).   

 

Please let us know exactly what your tests results state.  Do some more research on anemia.  It doesn't sound like you are feeling super fatigued or "out of breath" or are you?  I'd avoid a blood transfusion unless you were dying!  But it is important to get it resolved.  Low hemoglobin is hard on your heart. 

 

Feel better soon!


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#7 Adalaide

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Posted 07 July 2013 - 07:26 PM

I simply haven't been bellyaching about all my issues, it isn't that I don't have any that aren't possible symptoms of anemia. Things have degraded to the point that since I haven't worked in years (other than subbing at a college a once or twice a month) and my health is backsliding I have applied for disability. The worst of them is just being so damn bone tired all the time. I'll spend hours a day just laying and reading because I can't bring myself to find the energy to get up and do anything. I'm sleeping fine (surprise!) and sort of, more or less on something resembling a schedule (bigger surprise!) but by the time I've been up for 2 or 3 hours I just want to crawl back in bed and lay. And like I said, that is just that worst and most annoying of my issues. It would take a novel for me to outline my issues, so I'll stick with that which is the most obvious one as an anemia symptom.

 

There is one thing that logic tells me though with this. No doctor in his right mind would tell someone with borderline results to take 3 times the normal dose of iron. There is simply too much risk in telling someone to take that much iron without cause. I have wondered if part of the problem could be that since going gluten free my periods have gone from regular as clockwork on a 28 day schedule to all sorts of wonky on more like a 3-ish week schedule, and are worse than ever. At any rate, the plan was of course to see my test results. I had no idea when I hung up the phone Wednesday night that I wouldn't be able to simply log onto my account and see my results or I wouldn't have gotten off the phone without them.


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#8 seezee

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Posted 08 July 2013 - 06:28 AM

My daughter (14.5 with celiac) was recently found to be very anemic. Her pediatrician did some preliminary blood work which showed her counts were very low and then followed up with many tests to determine the cause and checked for things like clotting problems. She made sure it was iron defficiency anemia before asking her to take iron supplement. We did follow up bloodwork a month after the initial diagnosis to make sure it was improving and it is. She takes the iron with meals. It sounds very strange that they wouldn't do further tests and determine the cause or ask you to make a followup appointment.


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#9 Adalaide

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Posted 08 July 2013 - 08:43 AM

So I'm waiting for a call back today, don't know when that will happen. Until then I will simply chillax. I'm not thrilled with everything I see in my test results. With regards to what is relevant to anemia, normal TIBC and UIBC, low %Sat and Iron, Ferritin is normal. The website doesn't post ranges, so actual results are more or less meaningless. All it posts is a low/normal/high and a number. The only one I am guessing has any actual value is the % which is at 10.5. My internet is acting up this morning but from what I am able to ferret out, that is ridiculously low.

 

This is the first time in 4 1/2 years I have had a doctor even test this. Every doctor in the past stares at my test and says oh, you're balancing on 13ish on your hemoglobin so w/e. It has never occurred to someone to actually test further to see if there is an actual problem.

 

And while I do appreciate all of the suggestions and advice, I knew as soon as I looked at the symptoms of anemia that it fit the bill so I started taking the iron as the doctor suggested. I have been incredibly sick since I started, but I didn't want to talk to the nurse today without something concrete to tell her. I just fired a doctor by yelling at him in an exam room, the doctor before that was beyond incompetent. I won't do anything monumentally stupid, but I chose this doctor with great care many months ago (yes, it took months to get in for a first appointment) and I intend to play ball.


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#10 anjams

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Posted 17 July 2013 - 07:45 AM

I could have written your post! 

 

My hemoglobin dipped down to 8 this spring and I was desperate from exhaustion. Doc wanted to put me on iron pills but I do not tolerate them well and already was suffering from IBS-C without them. Was already on folic acid for a candida diet; added B-12 supplement since it was very low also. Did I mention I do not enjoy eating red meat nor can afford it often? I was desperate because the anemia was affecting my work performance. I was offered the hem infusions if I did not improve soon but they are expensive.

 

A little research yielded fish that were higher in iron as well as plants. I wanted to make the plants work since the fish were high in mercury/toxins. I tolerate one iron tablet a day but want to get off of that. But how? 

 

Juicing. I thought they were *nuts* but a nutritional consultant and somebody else heartily recommended juicing veggies. Since I was fighting candida, I could not juice fruit at the time so initially I was making 2 ounce shots of veggie juice and worked my way up. Within six weeks, my hemoglobin was 12.6! Yesterday I donated a pint of blood and my hemoglobin was 13.8! The guy at the blood bank listed off all of the high-iron meats but looked incredulous when I told him I did it through juicing kale. 

 

Dark green kale is the highest in iron veggie but when it is not available, spinach is the second choice. I mix other green veggies with it on a rotating basis (Chinese veggies are my preference because of their mild flavor and high vitamin content). After two months on the veggie-only diet, I was able to start adding a green apple or few carrots to the juice to improve the flavor but am very careful with the sugar. I never ate kale before this diet so it's been a life-changing decision. I now pick up a new veggie twice a month to try and the results have been excellent as I continue to recover from candida and gluten damage. Juicing allows most of the nutrients to be absorbed because it is not binding to the plant fibers. Best to drink on an empty stomach (I make it first thing in the morning). Also learned to add half of a lemon because the vitamin C aids in absorption and gut healing. 

 

The rabbits eat my juice machine leftovers but it is also good for composting, gardens and other livestock (a friend uses it for her chickens).

 

Good luck!


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#11 Pegleg84

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Posted 17 July 2013 - 09:15 AM

I eat kale. a lot of it. It's got all the good stuff. Great to hear it got your iron up so quick!

When I was about 16, my iron plummeted to 4. Yep. It took a few months to get it back up to 12, so I know what anemia feels like. Thankfully it's never been that low again. (If Celiac disease had been on the radar at the time, i probably could have been diagnosed then.)

 

Adelaide, did you talk to your doctor? Any solutions re: iron supplements bothering you?


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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#12 pricklypear1971

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Posted 17 July 2013 - 09:30 AM

When I started iron (I was low on every test) the supplements made me want to vomit. All day long.

I had to scale back from 2 pills to 1. That helped. Then, I just had to give it 2 weeks. After that, it was miraculously ok.

I did accidentally sensitize myself to iron again, though, when I went off my supplements after a stomach virus. When I started them up again, had the nausea. Took forever to get back on them regularly. Last time I accidentally stopped them, no nausea when going back on.

So, it can just take time. Sometimes you have to decrease dosage then work up.

I, if course, have thyroid involvement. Low iron is found with hypothyroidism - but no one has ever clearly explained if there are absorption issues (Celiac) in those iron deficient hypo patients...so I still wonder about that.
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Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#13 Adalaide

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Posted 17 July 2013 - 09:41 AM

We're trying to get the infusions or transfusions approved. Frankly I am sick enough that I don't give a crap which. Yes, I am that sick from the pills. I wake up feeling more or less fine, then I take my first pill. Other than that first half hour or so of feeling fine, I spend every waking moment feeling as though I am on the verge of vomiting. I eat because I know I have to eat, not because I want to eat.

 

This really is something that is beyond treating with diet for me. I do appreciate the suggestions but am simply unable to add any high iron foods to my diet right now. I tried last week, or maybe two weeks ago, some greens... it didn't go particularly well. So greens are still off my list of things I can safely eat. It isn't one or two, it is all dark, leafy greens, which are all the high iron ones. Probably because of where I live, I can get beef at shockingly affordable prices compared to fish and eat enough of it that it is probably the only reason I have remained a semi-functioning human being for so long. I know there are other high iron foods, but really most of the list reads as a list of things I can't eat. (Plus meat is the best source of iron.) Other than my folate problem I am not deficient in anything else. I'm not even deficient in that since I started taking a supplement for it, it bounced right back in a month so I know I'm absorbing things fine. It is just a matter of getting enough iron.

 

I just went through my monthly week from hell. Which means that I went through a week of basically not doing more than removing myself from bed to a chair, only to migrate back to bed and sleeping more than 50% of the time. I'm basically not even a person when I get my period. I'm a blob. Fortunately I'm starting to feel human again and now have a week's worth of chores staring me in the face. Joy. <_<


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#14 Gemini

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Posted 17 July 2013 - 10:00 AM

I simply haven't been bellyaching about all my issues, it isn't that I don't have any that aren't possible symptoms of anemia. Things have degraded to the point that since I haven't worked in years (other than subbing at a college a once or twice a month) and my health is backsliding I have applied for disability. The worst of them is just being so damn bone tired all the time. I'll spend hours a day just laying and reading because I can't bring myself to find the energy to get up and do anything. I'm sleeping fine (surprise!) and sort of, more or less on something resembling a schedule (bigger surprise!) but by the time I've been up for 2 or 3 hours I just want to crawl back in bed and lay. And like I said, that is just that worst and most annoying of my issues. It would take a novel for me to outline my issues, so I'll stick with that which is the most obvious one as an anemia symptom.

 

There is one thing that logic tells me though with this. No doctor in his right mind would tell someone with borderline results to take 3 times the normal dose of iron. There is simply too much risk in telling someone to take that much iron without cause. I have wondered if part of the problem could be that since going gluten free my periods have gone from regular as clockwork on a 28 day schedule to all sorts of wonky on more like a 3-ish week schedule, and are worse than ever. At any rate, the plan was of course to see my test results. I had no idea when I hung up the phone Wednesday night that I wouldn't be able to simply log onto my account and see my results or I wouldn't have gotten off the phone without them.

Addy........please have a thyroid panel done.  I hate to sound like a broken record but having a low thyroid can make you anemic.  Trust me on this one.  I have been there and it wasn't pretty.  I ended up anemic from a thyroid swing to low and then popped with shingles from the anemia.  Read your post.  You are so damn bone tired all the time.  That can be from the anemia but it also can come from a low thyroid.  You know how most doctors treat thyroid disease...they wait until your thyroid is half dead before they treat it....just like Celiac.  I can help with the numbers if you have them do a full panel...... :)


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#15 pricklypear1971

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Posted 17 July 2013 - 10:08 AM

Addy........please have a thyroid panel done. I hate to sound like a broken record but having a low thyroid can make you anemic. Trust me on this one. I have been there and it wasn't pretty. I ended up anemic from a thyroid swing to low and then popped with shingles from the anemia. Read your post. You are so damn bone tired all the time. That can be from the anemia but it also can come from a low thyroid. You know how most doctors treat thyroid disease...they wait until your thyroid is half dead before they treat it....just like Celiac. I can help with the numbers if you have them do a full panel...... :)


I second that.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!


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