Still Anemic After 9 Mos Gluten Free

[melie]

Hi All,

I am so frustrated! I have pretty much been anemic as long as I can remember (even have paperwork from tests run at age 12 showing anemia) I am always low, and I have been taking 50 mg a day (3xs the daily requirement, which is 18 for women my age). I started the gluten-free diet last April as a last ditch try b/c the anemia wasn't resolving no matter how much iron I was taking (even 100mg a day). I started the diet on my own b/c the celiac panel bloodwork came back negative, but I still felt it could be ''the'' problem. The digestive symptoms have cleared up..but the anemia hasn't. Just got the results from the latest test, Hematocrit was 31.5, normal range 36-46. Most recent ferritin was taken last October, was 29, normal range is 11-150. I used to be a vegetarian which *could* have been contributing some, but since going gluten-free, I have been eating meat at least 3x a week so even that I would think would bump it up some, along with the continuing supplements. I take an iron called Ultimate Iron by enzymatic therapy (ferrous succibate and ''liquid liver fractions" which is heme iron, supposedly more absorbable.

After 9 months, wouldn't some healing and better absorption of iron be happening? Should I change the type of iron? Dr. said to increase levels, which I will do, doubling to 100mg for 4 weeks then retest blood. But at this point I am very discouraged and am weary of dumping iron in that doesn't get absorbed. My energy levels are ok, I think I am so used to it that it is normal for me. I do karate and would love to not be so breathless in doing the intense stuff in class.

If anyone has been down this road as well, I'd love some help!

Re: the gluten-free diet, I don't cheat and will have the occasional accidental glutening, but really don't think any is getting in regularly that would be preventing healing.

I have read that the intestine heals in 3-6 months, so at the 9 month point I am baffled and so frustrated. I have also been tested for every other possible cause of anemia, ie Von Willenbrand's, colonoscopy, endoscopy etc and all negative.

Thanks for any input...I appreciate it b/c I'm at the end of my tired, iron deficient rope!

Melie

[bklyn]

Because I was anemic, my Hematologist referred me to the Gastro Dr. That is how I was diagnosed with Celiac. I was then give 10 infusions of iron, and since then (2 1/2 yrs ago) my blood tests have been good.

I don't know if you're seeing a Hematologist, but maybe that's an avenue to explore.

Years ago, when I was anemic, I couldn't take oral iron (hurt my stomach) I was self-injecting.

Hope you find an answer.

Kathy

[Jestgar]

Severely damaged intestines can take longer to heal. And some people just generally take longer.

Have your ferritin levels stayed the same? Or are they slowly increasing?

Is iron one of those supplements that doesn't absorb well unless you have the right environment? (Like calcium needs acid.)

I just found this:

A number of dietary factors influence iron absorption. Ascorbate and citrate increase iron uptake in part by acting as weak chelators to help to solubilize the metal in the duodenum (Table 1) (Conrad and Umbreit, 1993). Iron is readily transferred from these compounds into the mucosal lining cells. Conversely, iron absorption is inhibited by plant phytates and tannins. These compounds also chelate iron, but prevent its uptake by the absorption machinery (see below). Phytates are prominent in wheat and some other cereals, while tannins are prevalent in (non-herbal) teas.

[gadgetgirl]

I have also been tested for every other possible cause of anemia, ie Von Willenbrand's, colonoscopy, endoscopy etc and all negative.

Bone marrow biopsy???

[Ursa Major]

So much iron is very hard on the digestive system. If your villi aren't healed yet, you may just not be absorbing it, no matter how much you are taking.

You might need some iron injections to bump your iron up to a more normal level, and then maybe your supplements will keep it there.

I used to take an insane amount of iron pills (similar to the ones you are taking, supposedly very easy to absorb), until I was just doubled over with terrible stomach pain for weeks. At which point I started getting iron shots. That was seven years ago.

[rez]

Even though your bloodwork isn't positive, maybe a biopsy would help determine the problem.

[key]

I have been gluten free for 18 months. I also still have digestive symptoms that come and go. I just had an endoscopy and colonscopy with biopsies, but don't know the results. My iron levels are very low and I am very symptomatic. I saw a hematologist and just had my first iron infusion today. I will have 8, one every week. I am hoping they help me. My internist thinks I have had very low iron for a long time. I am also still very thin. My Ttg had returned to normal. I am sure the biopsies will be normal too.

Good luck,

Monica

[Rusla]

Here is the deal. I know when myB-12 is dropping, I feel like I am wilting. I went through iron infusions and B-12 shots which I refuse to take for the rest of my life. I would say for the majority of us if not all of us normal swallowable B-12's don't work because of our problems absorbing. I take sublingual B-12's because they go right to the blood stream and they taste good.

[chrissy]

maybe gluten isn't the cause of your low iron levels?

[deb.h.]

My ferritin levels have been extremely low for years. Right now it is at 10. My hemoglobin seems to be in the right range just not my ferritin. it seems no matter what I cannot get it up. three years ago when my daughters were 8 and 10 I had them checked and they were very anemic. Low hemoglobin and ferritin one had 17 and the other 21. hemoglobin was 117 and 128 normal is I think around 135. I forgot all about it until I went through old medical records. I always know when they are gettingreally low because they cannot get out of bed in the morning. I am going to the doc in a couple of hours. I had bloodwork done on iron and thyroid/ cholesteral diabetes and so on and she said she wants to see me. I hate that! she is new and really good so maybe I will finally have something done about the iron like shots or something. My old doctor never took it seriously! I think my thyroid is out. I used to be hyper then hypo then normal over about a two year period five years ago. it normalized after going gluten free in january of 2003. anyway if I get any answers on the anemia thing I will write back.

[deb.h.]

ferritin is 13 and hemoglobin 134. My thyroid is all good. I am so happy and relieved about that. I am gong to go on some high dose iron gluconate and see what happens in a month.

I know having a bad thyroid will lead to low anemia. What the implications are i don't know.

[melie]

What are the iron shots like? I have heard they are painful and can be dangerous, so I am scared about that. What reactions did you have to them, and how quickly did you feel better?

It seems I'm not alone with this prob!

Melie

[Rusla]

Iron shots are not painful, no different than any other vaccination in the upper arm.

As for low iron, I think I can successfully say that after a lifetime of low iron and the not discovering the cause until just over a year ago. As it was described to me that; with the damage that has been done some of us will always have to boost our iron levels, because we are missing what is needed in our stomachs to absorb it. That is why I do sublingual B-12 when I remember it.

The other thing is my B-12 was so low at that time I was 2 points away from being paralyzed. When a person is that low there is no going back and you do have to take B-12 forever. I decided to try an alternative route to shots to see if it would work.