<<Disclaimer: Verify this information before applying it to your situation.>>

The information on this List is so great.  It is so wonderful that we have a way of connecting with one another.  It is vital information that gets exchanged here, infromation that we simply can't get from our doctors alone.  So thank you to everyone that responded.  Wish I could have responded back to each one of you individually!
 
I found out that there are others out there have the same problem that I do with iron and anemia.  Someone suggested that if we have had undiagnosed CD for a lot of years before diagnosis, that damaged intestines that are healed from a gluten-free still don't absorb as well as they should.  That makes perfect sense to me.  Someone also brought up taking unsulphured molasses to increase iron.  I had taken blackstrap molasses after my diagnosis, along with an iron pill a day, and that is when my ferritin had gone up to 32.  Since I'm back down to 8, I think I will try the blackstrap molasses once again.  It is supposed to be very good for you and rich in other minerals as well as iron.  The taste isn't so great and you have to get used to it.  Iron pills really bother my stomach the longer I take them.
 
The responses I received are:
 
I have low iron too--and am still menstruating as well. I have really
heavy periods and other women I know don't seem to--don't know if their
birth control makes the periods lighter or just a difference in women. I
found some time-release iron pills that don't make me feel sick. I try
to pair them with my biggest meal and usually take them after or while
consuming protein. That seems to help. I eat meat and veggies too in my
diet and figured I probably even get more in my diet than most women,
but I'm always on the brink of being anemic too. I can't recall the
brand of my pills because I'm at work, but I think they might just be
the Kroger brand. Hope that helps--and thanks for sharing your info
because it's interesting when someone else has the same issues.
*****
Borderline anemia and "weird" liver readings were the only signs of my CD, otherwise I have been asymptomatic.  After 7 years on the gluten free diet (and I eat a fair amount of beef, liver, and iron-rich grains and veggies), my total iron level is still on the low-end of normal.  My doctor and I finally decided that it's due partly to giving blood 4 times a year and partly to individual variation.  My energy level has always been fine, so I've stopped worrying about it.
*****
I can tell you I have had the same experience as you. Diagnosed 3 years ago, I follow the gf diet strictly and any ingestion of gluten is accidental. I'm now 51, still menstuating, and got my iron levels up (not much higher than you did) stopped taking the iron and my last blood tests -- I was having all of my old anemia symptoms -- tired but couldn't sleep, wounds very slow to heal, pale skin, chewing lots of ice) Sure enough I was back to very low levels and very low ferritin. So I'm back on the iron. I take SlowFe every two or three days with 2 colace pills and a cup of orange juice. Calcium (dairy products) inhibits the absorption of iron. Iron in red meat is more easily absorbed than iron in plants. It is not the menses; in fact I had a d&c and was anemic several months after that. Same story with my internist. In fact my rheumatologist helps me with the absorption stuff. I am on 50,000 iu's of Vitamin D every two weeks because I can't seem to
 absorb that -- and Iive in northern Ohio -- and Vitamin D is essential to help absorb calcium which I get from food, a better source than supplements. I have osteopenia and will have another bone density scan in January (2 years after the first.) Please summarize what you hear from everyone. I, and my dr. have been wondering about this absorption problem.
*****
I was diagnosed about 5 yrs ago due to low iron discovered during a severe bout of kidney stones.  I still take iron to this day.  It took a long time to get my iron levels back up after following the GF diet, but they will still dip sometimes.  I think it's just something I have to live with now.  I take 2 Feosols every day that I remember, which is not every day, even though I could take them every day and never have too much.  I had 2 scopes after diagnosis, and I was told my intestines looked fabulous, and the biopsies actually come back negative.  But I still get low from time to time.  I also had anemia as a child.  Sometimes problems we have as children go away for a while, but then return to haunt us.
 
It is not as bad as it was when I was diagnosed, but now I can feel it coming on.  I also am still menstruating, so I'm sure that has something to do with it.
*****
I read your letter and briefly thought I might have written it! I am 52, diagnosed in July 07. I am like you, very careful and no intentional ingestion of gluten. Still menstruating, my ferritin, etc., is still low and I was quite surprised. I do plan to have another scope done as the scope in July of 07 showed totally flattened villi, duodenal ulcers, and other damage. I just moved to Boston so will be seeing the docs at the Celiac Center in November. 

Anyhow, my GI doctor in TX did recommend a great iron supplement: Proferrin ES 

http://www.coloradobiolabs.com

No stomach upset at all; I started with just one a day and am now changing to 2 or 3 a day to see if I have improvement. I have improved a bit on the one a day dose. Does not upset my stomach at all. I just can't tolerate the other iron supplements and it does not seem to be worth the discomfort if they don't work anyhow. You can order the Proferrin directly from the website, don't need an RX. Of course if you still have intestinal damage you might not digest any form of iron and IV is the only other route if it becomes necessary. Last resort in my mind. 

I posted recently and will be summarizing about my tTG IGA level still being high despite the diet. The responses I got from that post indicate that it is a common experience to take 2-5 years to heal if diagnosed after many years of damage. 

Have you done the antibody levels lately? I think there is such a variation in follow up care after diagnosis and what is recommended. I think most would agree that low ferritin and/or other symptoms would warrant both an EGD and colonoscopy repeat. 
*****Try unsulphured molasses (get at a health food store).  Just hold your nose
and take about two tablespoons a day before meals.  Six tablespoons (I
think) was the optimum dose but you could ask someone more knowledgeable at
the health food store.
Your story could have been mine in terms of the intractable anemia - 27
years of it.  I was diagnosed at age 57 and the gastro (idiot that he was)
asked, "So, I imagine your periods are very heavy because your iron is so
low." (ferritin level of 2)  Being irritable and sick and tired of being
told it was all in my head, I responded, "Good god, man!  Look at the year I
was born.  Can't you do basic math?"  Ironically enough, my anemia was
actually better while I was still menstruating even though the periods were
very heavy.
Anyway, the molasses and getting off all proton pump inhibitors (for GERD)
solved my anemia.  And, yes, you could have huge areas of scar tissue on
your intestines.  Mine was bad enough to show up on an X-Ray.
*****
A few more thoughts. It is very difficult for any woman to consume sufficient dietary iron within limited caloric demands, therefore iron supplements are sometimes necessary.
*****
I have been diagnosed with Celiac Disease for 7 years having the GI symptoms and iron deficiency anemia I went through iron infusions twice once at my diagnosis and 1 years earlier. I am thoroughly compliant with the GF diet, I am actually a registered dietitian. About a year an a half ago, once again I was severely anemic and went through an IV iron infusion and was scoped again.  I added beef to my diet and also started iron supplements Ferro-Sequels (a combination of ferrous fumarate and stool softner), which another dietitian recommended to me. The hematologists, gastroenterologists and internal medicine  doctors usually do not recommend this as they don't know about it. Ferro-Sequels is available over the counter and is labeled gluten free. It is expensive and not as well absorbed as ferrous sulfate, most commonly suggested. The thing is that it is very well tolerated and well worth the cost over going through iron infusions. I suggest taking it
 along with a heme iron source - beef or with a vitamin C source. My hemeglobin went from 8 a year and a half ago to 14. I recommend this product to everyone.
*****
As far as I know  Caffeine, Tannins (wine and tea) and fibre reduce
the ability to absorb iron.
Fruits such as Dates, currants, Apricots are supposed to be sources
of easily digested iron...
*****
there is an auto immune disease which causes your body to not take up B12. I am not sure about what this disease is called in English but I think it could be pernicious anemia you can find more info here: http://en.wikipedia.org/wiki/Pernicious_anaemia
*****
Fact is: many celiacs, even perfectly healed ones, don't absorb iron very well. 

My celiac 8 year old son (menstruation not an issue) can't keep his ferritin above 20 without an adult dose of iron daily. That will get his levels up to maybe 35 after 6 months (normal range at our lab is 30 to 300). He's been GF 4.5 years, and shows signs of being quite well healed. I also have iron absorption problems, although not as severe as his.

Just recently I heard a GI who specializes in celiac speak, and mineral absorption was one of the topics. His view is that celiacs do not have "normal" function in the small intestine no matter how well healed we might be. He prescribes high doses of quite a few vitamins and minerals for his celiac patients.


      

Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC