[Wolicki]

Hi All,
I've been anemic on and off me entire life. Before going gluten-free, I had iron infusions annually via IV. Since going gluten-free, I am anemic again. I can now tolerate oral iron, but really have a lot of iron deficient symptoms, and am considering doing the infusion thing again.

Have any of you done this since going gluten-free? Did it last and did it resolve your symptoms? Thanks!
Janie

[strawberrynin]

Janie -
I've been receiving monthly iron infusions because of anemia. Been gluten-free for about 6 months now. I tried for three months to do oral iron - ferrous gluconate rather than ferrous sulfate - but that didn't work for me. If all you need is an annual infusion, that's great - I'd say do it if it makes you feel dramatically better. I've been so anemic for so long, the three months of infusions thus far have not made a dent in my iron stores. I've still got a way to go. It's all about how much better it makes you feel and if there are no alternatives.

-Lynn

[TrillumHunter]

I'm going on Monday to have the labs done to see how well my second round did. After the first round my level went from 4 to 44, but that is still on the low side. We are looking for mid to high because I have very heavy cycles.

I get 62.5mg of Ferrlecit every week for 6-8 weeks in a row. I've done this twice. I'm hoping not to do it again, but the dr. is saying to expect that. She also said this will most likely be an ongoing issue for life.

I did add in B6 this last round. I have B12 shots every three months and I feel pretty certain I am deficient in all the B's.

It's fine, but it takes a lot of my time. I have to carve it out so I can protect my health and well-being.

[trents]

Wolicki,

Have you been tested for pernicious anemia, i.e. lacking the "intrinsic factor" necessary to absorb B12, a necessary biochemical compound for the assimilating of iron frome the gut?

[Wolicki]

trents, on Nov 7 2009, 01:25 PM, said:

Wolicki,

Have you been tested for pernicious anemia, i.e. lacking the "intrinsic factor" necessary to absorb B12, a necessary biochemical compound for the assimilating of iron frome the gut?

Funny you should mention that. I was just looking into that yesterday. I think I've been tested for everything except for intrinsic factor, unless it's called something else on a lab slip. Is it called "intrinsic factor" on the lab report?

[trents]

I don't think intrinsic factor will be on your usual, run of the mill CBC or CMP lab work sheet. It requires special testing and I don't think they can measure for it directly. I'm sure someone else on the forum has had it done and can explain the testing process. Do you take a folic acid supplement? If so, discontinue it some time before you get pernicious anemia testing done because folate supplementation can mask it. The fact is though, many docs don't bother with the testing and prefer to just give the B12 injections. If the injections improve your anemia then it is assumed you lack intrinsic factor. In addition, it is now known that very high B12 oral supplementation (4000 micrograms or greater daily) can be effective when intrinsic factor is lacking. Apparently, there is an active B12 uptake pathway (requiring intrinsic factor) and a passive one which is much less efficient but does work with high does of B12. This is safe since B12 is water soluble and excess is excreted in the urine.

[TrillumHunter]

It's called Schilling's test. You have drink with b12 that's labeled with a traceable additive. You collect your urine for 24 hours and they look to see how much is absorbed. It's not done commonly because of the cost and because it is so easy to supplement safely. "Sprue" is listed as one of the cause for pernicious anemia. For some of us, it's because of low stomach acid that can improve with the gluten-free diet. For others, like me(yeah), it is an autoimmune response secondary to the celiac.

This was the first thing I was diagnosed with about 7 (!!) years after my symptoms started. It took 7 (!!!!) more years to be diagnosed with celiac. I have residual neuropathy from be deficient for so long.

[Wolicki]

[quote name='TrillumHunter' date='Nov 8 2009, 06:00 AM' post='573846']
It's called Schilling's test. You have drink with b12 that's labeled with a traceable additive. You collect your urine for 24 hours and they look to see how much is absorbed. It's not done commonly because of the cost and because it is so easy to supplement safely. "Sprue" is listed as one of the cause for pernicious anemia. For some of us, it's because of low stomach acid that can improve with the gluten-free diet. For others, like me(yeah), it is an autoimmune response secondary to the celiac.

This was the first thing I was diagnosed with about 7 (!!) years after my symptoms started. It took 7 (!!!!) more years to be diagnosed with celiac. I have residual neuropathy from be deficient for so long.
[/quote
I started having neuropathy about 2 months ago. Doc says it can't be b12 because my labs put it at 575. It kept getting worse, and they checked everything else to find a cause. I started loading up on the sublingual b12 and it has improved some. However my b12 level in my blood is dropping> My methylmalmonic acid is high, which says that I am not processing it well. I am taking sometimes 8000 mcg of sub b12. I have an appt on Wednesday for an injection.

What are the chances that the neuropathy will go away completely? Anyone?

[TrillumHunter]

Are you supplementing with folic acid? B12 and folic acid work together, but it's sort of a balancing act. Folic acid is usually easy to get, but most gluten-free baked goods, especially homemade, aren't fortified. It's easy to have your folate level drawn.

575 is just mid-range. That's not high enough for me. I have symptoms at that level. 800 is a good level for me.

I don't want to scare you about the residual PN. It's nothing like I was experiencing before and it isn't daily. I can deal with it just fine. Some folks DO heal completely. There's a good chance for you to heal completely. I was sick for a long time and no one could figure it out. You're early in this, so be aggressive in treating it to protect your nervous system.

Get used to giving blood.

[Wolicki]

I take a multi with folate, and my labs are in the mid range of normal for folate. How long on injections til the neuropathy goes away?

[TrillumHunter]

I was so low I did a loading dose to begin with. Once a week for two months, once every two, and so on. After about six months, it was as good as it was going to get. I did feel better after a month.

Are you seeing a neurologist?

[BamaGal]

Hello,

Just wanted to say hello and ask a question about neuropathy. I was diagnosed with Celiac apx. 6 years ago and have been doing fairly well on the diet. Still having some problems but the diet has really helped me a lot. In the last 5 months, I have been having excruciating right leg pain. My leg goes from feeling fine (a little heavy but otherwise fine) to excruciating burning pain in the knee and all the way down. It never seems to hurt in the same place. Plus, if I am on my leg at all, such as walking from the car to the building at work, I have terrible pain by the time I can get into the building. Does it sound like neuropathy? My Rheumatologist said it was arthritis but I am not convinced. I just wanted to talk to someone who is going through the same thing. Please -- I would appreciate any help I can get. I don't want to go through the holidays in this pain. Thanks in advance!!!!

[Wolicki]

TrillumHunter, on Nov 8 2009, 02:07 PM, said:

I was so low I did a loading dose to begin with. Once a week for two months, once every two, and so on. After about six months, it was as good as it was going to get. I did feel better after a month.

Are you seeing a neurologist?

I am not seeing a neurologist. Frankly, I would rather poke myself in the eyes with sharp sticks than to go see yet another doctor My PCP gave me the shot yesterday.