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sashamay23

Low Hemoglobin..normal Ferritin..

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Well you guys have been horribly encouraging and as i said in my post, i'm going to go ahead and get the celiac panal assuming my doc orders it for me (i emailed her so i should find out tomarrow if she did..and i should then get my blood drawn mid-wk).

but all this talk about my anemia and iron levels has me very perplexed and i was wondering if any of you have any tips/advice/things to talk to my doc about...

i was diagnosed with anemia when i was about 13yrs old. I was exhasted/fatigued, my hair was falling out, i'd get cold chills all the time and had a hard time functioning in school. was told to take 900+ mg (give or take 5mg) every day for three months. I did. and things started to improve. but after the 3 months, i discovered i was still having issues if i didnt keep up on the iron.. and over the years, whenever id go more than a wk without taking a few 325mg tablets.. i would get so tired/exhasted/sleepy/sleep 17+ hrs and still be sooo lethargic etc. and thats basically been my life since then.

i brought it up with docs who have just told me "oh just keep taking ur iron then." - i can feel when it starts to get low and i have to take it, or i just cannot get out of bed and it interferes w/ work and life.

i finally bugged my new doc to do a ferritin test on me..and i thought itd be low but it came out "normal" at 70. my hemoglobin has never been over 12, and usually it stays between 11 and 12. i purposly stopped taking iron and was hardly functional for the last cbc test and i was only at 11. just "barely anemic"

it makes me wonder though with regards to this possible celiac thing.. my ferritin levels should be showin way lower for the week at the most, i can go w/out iron.. but i have been taking steady iron supplements (and of course increase in diet and such.. i natrually eat kinda high iron foods b/c iv felt this way so for long.)

it makes me wonder why i hafta keep taking iron and whats causing it..(ie celiac?) and am i maybe just ultra sensitive to lowish hemoglobin levels?

if i do have celiac, itd make since that i have to take so much iron to maintain my low levels.. but again...i dont know. im confused.

and then now i'm wondering if maybe a lot of my exhastion and fatige could be celiac..it sure explains all my intestinal issues iv had.

where b4 i was freakin out about it being celiac..and now.. i dunno, maybe im hoping it is? i wanna feel like a "normal" 22 yr old..

i thought id throw the question/thoughts/rambligns out there to see if any of you have had any similar expierences at all..and to try to make since of everything in my head if thats okay!

thanks so much!

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I have the same thing ... and just about the same symptoms you describe (plus some because they became much worse at the years went on, but at 22 I had the same ones as you). Although I am gluten intolerant, my anemia issues come from babesia (a coinfection of Lyme Disease). Malaria can cause the same thing.

Of course, celiac can cause an iron deficiency, but since you're still in the "looking for what's wrong" stage, I thought I'd bring up a couple other things.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Your ferritn (a transport protein made by the liver) could be thrown off for some different reasons.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Your ferritn (a transport protein made by the liver) could be thrown off for some different reasons.

nora

hm.. interesting...any ideas what could throw off ferritn levels? or give false levels or whatever?

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Here's something interesting I found http://www.labtestsonline.org/understandin...ritin/test.html

Ferritin is normally found mainly inside of cells, with only a small amount in the blood. When there is damage to organs that contain ferritin (especially the liver, spleen, and bone marrow), ferritin levels can become elevated even though the total amount of iron in the body is normal. Ferritin levels may not be particularly helpful in persons with liver disease, chronic infections, cancers, or autoimmune diseases (which are all associated with organ damage).

and this https://www.healthatoz.com/healthatoz/Atoz/.../iron_tests.jsp

Ferritin test

The ferritin test measures the level of a protein in the blood that stores iron for later use by the body.

Medications that can cause increased ferritin levels include dietary iron supplements. In addition, some diseases that do not directly affect the body's iron storage can cause artificially high ferritin levels. These disorders include infections, late-stage cancers, lymphomas, and severe inflammations. Alcoholics often have high ferritin levels.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Iron is only one part of the puzzle, a substance called erythropoetin is produced by the kidneys and has a crucial role for hemoglobin production.

You can have anemias related to low B12 - in that case -ferrtin levels would be normal but the person would have a type of anemia called macrocytic anemia.

A person in kidney failure would have normal ferritin but be anemic because the kidney is no longer producing erythropoetin.

B 12 deficiency is common in celiac disease for 2 reasons

1) the damaged intestine cannnot absorb the vitamin

2) the intrinsic factor produced by gastric parietal cells that allows B 12 to be absorbed - is not produced because of autoimmune attack on those cells.

There are a number of threads about B 12 in this forum so it is a common problem.

Fatigue is also a big symptom for B12 deficiency, as well as clumsiness, numbness or tingling....

Many here have recommended the sublingual B 12 (under the tongue) for oral use.

I use B 12 injections because I do not produce the intrinsic factor - so nothing would be absorbed no matter how much I took orally.

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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