update - anemia back after 6 months

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CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 3/24/2009 8:40 PM (GMT -7)   
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.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/25/2009 6:36 AM (GMT -7)   
I am going thru the same thing. I had to have an iron infusion last year, which really helped. I believe my anemia is caused by my diet because I no longer eat red meat. Can't take Iron supplements as they tear up my stomach. Doc doesn't seem super concerned about it, he said if my stores go down anymore we will just do another infusion. Just wanted to let you know you are not alone.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 3/25/2009 8:16 AM (GMT -7)   
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...
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements.

Tried SCD, didn't work, now avoiding gluten and dairy.


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 3/25/2009 9:08 AM (GMT -7)   
CrazyHarry, I'm sorry you're having to deal with this again... I know you will get it figured out, though. It is weird that you feel so good, yet you're so anemic... Anyway, just know I'm thinking about you!!!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too.


blacky
Regular Member


Date Joined Mar 2003
Total Posts : 376
   Posted 3/26/2009 6:37 PM (GMT -7)   
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.
blacky - Donna
Mother of 3, 3 resections from CD


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 3/28/2009 7:07 AM (GMT -7)   
saw my GI yesterday. he recommends i have an upper GI (small bowel/lower intestine exam where you swallow barium/contrast and they take a bunch of xrays) to make sure that there is no stricture or narrowing. then they'll have me swallow a camera which will take pictures of my insides for like 8 hours as it makes its way through my system. he wasnt hip to have me get a colonoscopy done as i had one last june and it looked good. plus the last one i had really messed up my bowels for a number of months, so i'm in no hurry to have one either. plus if i am bleeding, the blood must be well absorbed since i am not seeing anything so there is a good chance it is higher up in the digestive tract. i'm hoping i can get the upper gi done at the end of the next week.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 4/3/2009 9:23 PM (GMT -7)   
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....
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 4/3/2009 10:01 PM (GMT -7)   
If you are not losing iron due to bleeding, then there are only a couple of things that spring to mind. The obvious one is poor absorption. Poor absorption can be due to loss of small intestine either from surgery or from damage due to disease. It could also be due to dietary factors. Some foods contain compounds that bind minerals - preferentially iron. These compounds can be oxalates or phytates (or ?) and are usually found in raw foods in greater amounts. The third possibility is bacteria. Several species of bacteria have developed methods of stealing iron from the body since it is a growth limiting factor for them. When you think about it, the only way to lose iron is either the feces or urine (or sweat, but that is stretching a point). Urine is not really very likely, but maybe a urine test would rule it out. The most likely is the feces due to one of the causes above. Do any of those three strike a chord?

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 4/4/2009 7:32 AM (GMT -7)   
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.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/4/2009 9:33 AM (GMT -7)   
FYI, iron is absorbed in the duodenum, not in the terminal ileum.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 4/4/2009 11:46 AM (GMT -7)   
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.

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 4/4/2009 9:29 PM (GMT -7)   
It suddenly occurred to me that I was not very clear when I said that bacteria had developed methods of stealing iron. I should have said GUT bacteria. It is not obvious that they can remove iron from your body, but there are several that do just that. I don't recall which ones off hand, but you may be able to help the problem by taking probiotics or eating fully fermented yogurt (to avoid the lactose problem). The bacteria from those sources might be able to displace the undesirable ones - all this assumes that this is where the iron is going, of course.

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 4/5/2009 4:46 PM (GMT -7)   
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.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 4/5/2009 8:36 PM (GMT -7)   
I don't see any reference to liver problems causing poor iron absorption - rather it seems that low iron causes liver problems. It is possible that there is a connection because the liver produces transferrin which is the agent that transfers non-heme iron from the gut. Possibly liver malfunction could impact transferrin production, but I have not found any reference to this. Consider this extract (from Medscape):

Iron uptake in the proximal small bowel occurs by 3 separate pathways (see Image 8). These are the heme pathway and separate pathways for ferric and ferrous iron.

In North America and Europe, one third of dietary iron is heme iron, but two thirds of body iron is derived from dietary myoglobin and hemoglobin. Heme iron is not chelated and precipitated by numerous constituents of the diet that renders nonheme iron nonabsorbable (see Image 4). Examples are phytates, phosphates, tannates, oxalates, and carbonates. Heme is maintained soluble and available for absorption by globin degradation products produced by pancreatic enzymes. Heme iron and nonheme iron are absorbed into the enterocyte noncompetitively.

The first thing that this suggests to me is the hazard that you may be getting excess carbonate from a calcium supplement or antacids. The other possibility is a low gastric acid level, either from inflammation or from using proton pump inhibitors or antacids for reflux problems. This prevents the breakdown of non-heme iron sources for subsequent absorption.

One caution - I found an article that suggested that high levels of iron in the gut tissue can promote bacterial infection, so there are trade-offs to iron supplements.

There are some reports of enhanced iron absorption due to Lactobacillus plantarum (Lp299v strain) which is a commercial food additive from Europe made by Probi . See:
Iconoclast about 2/3 of the way down the page. For more, see http://www.lp299v.co.uk/research

Post Edited (Keeper) : 4/5/2009 9:42:06 PM (GMT-6)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/7/2009 7:46 AM (GMT -7)   

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
Regular Member


Date Joined Apr 2009
Total Posts : 30
   Posted 4/7/2009 10:42 AM (GMT -7)   
I am going thru the same thing. Started in 2006 with Hgb 6.3 Hct 20.3 Vitamin B12 241 sl. low Ferritin 3 very low. Had 4 units blood which only got my Hgb 10.9. Had all the tests....small bowel series, Colonoscopy, EGD, Echo. Couldn't do camera because of a stricture at the remainder distal ileum either from past surgery or active Crohn's. Hgb & Hct dropped again in 2007 which required 2 units of blood. Starting seeing Hematologist.... only thing he came up with is anemia due to blood loss. Duh! He did start me on Repliva iron pills which have kept my blood levels up and my Gi doctor has started me on Entocort EC. So between the two my Hgb is 12.8 & Hct 39 Ferritin 24. I feel so much better now. The only problem is now they have d/c making the Repliva so don't know what doctor will put me on. I really liked the Repliva. Oh i take B12 subQ tables

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/7/2009 12:08 PM (GMT -7)   
fldirt...do you know what your B12 is, now?

fldirt
Regular Member


Date Joined Apr 2009
Total Posts : 30
   Posted 4/7/2009 2:34 PM (GMT -7)   
No but I am seeing my GI doctor this month so should get blood work. And i found out they are NOT D/C Repliva. Which is good for me as i am doing well on it & the Entocort EC.

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 4/7/2009 8:57 PM (GMT -7)   
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.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 4/8/2009 9:34 AM (GMT -7)   

CrazyHarry,

Any good endocrinologist should know that Vitamin B12 deficiency can be presumed at 300. However, it should never be below 400. Optimal B12 should be 500-600. The protocol to follow for B12 diagnosis and supplementation is decribed in the link below (the full text document is free):

http://www.ncbi.nlm.nih.gov/pubmed/12643357

Lab reports adhere to outdated guidelines and therefore might say that B12 deficiency is presumed only below 230, or 200. This means family docs and GIs are routinely led astray, thinking B12 is normal when, in fact, it can very well be deficient. 

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