update - anemia back after 6 months

greetings all. if you remember back to 2007 and even 2008 i was dealing with a mysterious anemia issue, which i seemed to have beat late last year. today i checked in with my hematologist for a 6 month blood work assessment. i'm glad i convinced him to do this 6 months ago cos the results were bad news. my iron stores are very low. so basically the only iron in my body was bound up in the hemoglobin. i am probably a month away from severe anemia which would require blood transfusions and i dont want to go through that again (did that in July and September 2007 when this was being figured out). i thought i had this beat finally, but now it seems to be an on going saga, going on 2 years soon here. so the obvious suspect is the crohns disease. but i feel fantastic - no symptoms at all. but i am losing blood somewhere to make my iron stores so low after boosting them up last year using iron supplements for many months. this is rather discouraging cos like i said, i feel great and i have been for over 2 years now. so i'll make the calls to my GI doc and my naturopath doc to cover the bases. i am expecting to get thrown through the ringer - lower and upper GI tests and perhaps an endoscopy as well. what fun. but hopefully it will allow them pinpoint the problem. i had a colonoscopy done 9 months ago (june 2008) and my GI doc said things looked great - no sign of crohns, and i was at that time dealing with this anemia/low iron issue. i dont see how ratcheting my diet back will help with this, especially cos i feel symptom free and in great health and spirits. i am just sick and tired of it always being something with me. makes feel like i'm a hypochondriac or something. so in the mean time i'm taking iron supplements as that will help the low iron levels but it does not address the underlying cause, which still needs to be discovered. i'll keep you updated.

Harry, my stomach also feels fine yet I'm doing a slow microscopic bleed. Right now I would say my low hemoglobin is my biggest problem, no D and not much gut discomfort. My low weight is also an issue, but at least it's been stable now for about 8 months. Good luck and keep us posted. Like Nanners I can't take iron and have to watch the red meat intake.

I know what you mean about if it's not one thing it's another...

Hey I just posted a topic on this. Did you find out what was going on. I sound like I am in the same boat. I get Iron injections every week, can not take iron pills.

had an upper GI exam today. drinking barium always sucks, but this exam is way better than a colonoscopy, sigmoidoscopy or barium enema. anyhoo, the radiologist was pleased with the results. no signs of strictures or anything. he said i looked good. even the resection point of the small/large bowel looked good he said, and that is the most likely spot it would return if it were too as i had the ileum removed in 2005. so now i am set to do the camera pill to get an idea of what the insides look like and perhaps shine some more light on why i am becoming anemic due to low iron. i dont think it is crohn's though as i feel fine in that regard. i believe something is up with my liver or bone marrow. the camera pill will help narrow it down between crohn's disease active in the bowels or some other cause which means i'd then have to pursue other courses of action, which i am currently doing in regards to my liver, cos like i said, i dont think it is my intestines leaking blood that is making me iron deficient.

more updates to come later....

hey keeper, thanks for the ideas.

when i'm on iron pills i do fine. right now i am taking 100 mg/d. it is when i am off that my iron levels tank slowly. so it has to be an absorption issue or a retention issue.

the only part of the small intestine i lost was the ileum (2 inches), and that is more involved with b-12 absorption. this problem didnt start until 2007 and i had surgery in 2005, so i dont think it is due to damage to my intestines caused by surgery.

one idea is that it is my liver and a bacteria called mycoplasma pneumoniae, as that was found in my blood stream. so i'm taking stuff to clear up these 2 problems.

i do eat a bunch of raw food, but i dont think it is phytates as those are more prevelent in grains. i found that i do best on a very low grain diet and when i do eat grain based foods, i prepare them myself, soaking the grains to remove the phytates and also going gluten free when possible.

i am not seeing any blood in my urine or feces, but then it could be well absorbed in the feces, so i need talk to my GI to get a faecal calprotectin test done.

Oh, duodenum - that means that GI reflux scarring might also be a problem. Anyway, oxalates are found in surprising foods. I am sure you know about rhubarb and spinach, but also tahini due to the sesame seed hulls. Several diet counselors actually recommend unhulled sesame seeds as a source of non-dairy calcium, but the oxalates in the hulls prevents any calcium from being absorbed and can even bind other minerals and prevent their absorption. You might want to Google oxalate and "Food source" to see what others there are.

thanks keeper, but i'm way ahead of you on the probiotics and fully fermented yogurt - been doing both of those for over a year. i do appreciate the interest you've taken and the ideas you keep throwing my way.

i think the poor absorption is due to stuff going on in the liver and mycoplasma pneumoniae found in my blood. my b-12 levels are low (go figure - expected that) and perhaps some adrenal/homocysteine things too that need correcting. so i got some things to look into that are not crohn's/GI related. and this is the avenue i think where i'll find my answers - the cause and a solution.

Hi CrazyHarry,

If pneumonia was found, that could explain the low HGB, as the body can "hide" iron if you are sick with a virus or bacterial infection.  When my daughter was sick for a few days with a cold, her HGB went down to borderline anemic and her TSAT was way below normal. CRP and sed rates were up, too. I was worried about the CRP and sed rate so to rule out Crohn's related inflammation, they were redone in two weeks, at which point they had both settled down.

Many doctors don't realize that a B12 deficiency should be assumed whenever B12 reaches 300. B12 treatment should be started any time B12 is 400 and below. For Chronnies, such treatment should include a shot - B12 helps the body use iron, as you probably already know. B12 also regulates homocystein levels, which you probably also know.

Which supplements are you taking?

fldirt...do you know what your B12 is, now?

njmom -

if i'm not mistaken, america has the b-12 level for deficiency at like 200 while in europe it is like 400. big difference. i dont know what my b-12 levels are, but as it is normal to be low for crohn's patients, it does not surprise me if mine is low. that means i need to stop being lazy with that supplement and perhaps up the dose too cos if i'm low then i could do with a loading dose for a while to get them back up. as for what i'm on, i've added evening primrose oil, milk thistle, and a couple other things, to my regular protocol of probiotics, digestive enzymes, green drink, multivitamin, vitamin D, cal-mag and now 100 mg/d of iron. these new supplements are to help detox my liver and hopefully rid my body of the bacteria. in addition to my GI and naturopath, i'm working with 2 new docs now, both who approach things from a completely alternative medicine side, and one of these guys is a legit MD. i'm considering adding some more stuff for a parasite detox, under the supervision of these 2 new guys, and also getting my hormone levels checked as my adrenal function may be low (that will be expensive so thank goodness for the tax refund - if it ever comes). i know i'm gonna get put on more homeopathic stuff in the next week or two, like samento. but at least this stuff doesnt have the side effects like medicine does. so i'm gonna go bonkers with this stuff and just really pound my body and then get my blood rechecked in like a month. if i'm not seeing any favorable results from what i've done by then, and of course any GI bleeding is ruled out from the camera pill, then i'll have to look into other possibilities, like bone marrow. i'm hoping with the eradication of the bacteria and detox of my liver that my iron levels will increase as the blood doc (not a legit hematologist) is of that opinion. oh, my homocystein levels were low too. so i've got a lot of work to do over the next month. should be fun.