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Canadian Karen

Okay, Guys, Need Your Input On Something.....

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Thanks Guys!

The liquid iron was the first we tried. I am eating liver till it is coming out of my batuzzis!!! She also wrote on the note to the specialist:

"despite p.o. elemental iron, is ti time for systemic iron?"

I also have been chronically anemic since I was a child. I can remember making weekly visits to a doctor when I was little and getting my finger pricked all the time (I guess that's how they tested it for kids??)

Hugs.

Karen

How are your B12 levels? At my worst my iron and B12 were low but the B12 was lower. After sublingual B12 supplements it was easier to get my iron back where it should be. Don't know if it would apply for others but it helped my brain fog and fatigue quicker than I thought it would.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I just heard from the specialist's office:

He wants me to continue with the oral iron supplements for the time being..... :huh:

I swear, sometimes you feel like you are just banging your head against a wall.... <_<

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Karen... A suggestion :) I always take things into my own hands or insist when need be. Perhaps your doc is stubborn...I'm not sure. When my doc said to continue the pills after a long time on them with no results, I insisted on seeing a hematologist to get the infusion. Once I got to the hema., she totally agreed. Anywho, I can't remember how long you have been this way...but if you are refractory, you can probably take pills till you are blue in the face w/o results. No villi, no iron. Just a thought :)


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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I shouldn't have much of a problem getting a referral to a hematologist since I was supposed to go to one anyway for another test, and I have been procrastinating on that one.

Both my brother and my father have something called "lacking Factor 5", whatever that is, and all members of the family are supposed to get tested for it. Dad's condition is actually so severe that the medication he takes for it is rat poison (Warfarin, something like that.....). Anyway, I was supposed to go to brothers hematologist for the blood test. I will work on getting in to see him.....

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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I have a friend with that disease Karen. Glad you're going to try the hema. Let me know how it goes!


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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