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Pernicious Anemia (megaloblastic Anemia) And celiac disease


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13 replies to this topic

#1 Robix

 
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Posted 15 March 2006 - 02:10 PM

Hello,

Am just waiting for my GI apointment but strongly suspect my mysterious symptoms and ailments are related to Celiac Disease.

I was diagnosed with Pernicious Anemia in 1992 and have been receiving monthly B12 injections since then. Have just discovered that many people with Pernicious anemia develop it because of Celiac.

I would be curious to hear from others with pernicious anemia, to see what the relationship is between the two disease states, and how best to optimize managing both.


Sypmtoms from Pernicious Anemia I experience are extreme fatigue, irritation, depression, mood swings (during periods of deficiency) and sleep related problems.

Am wondering how many of these symptoms could be better controlled through a gluten-free diet and are inter-related with celiac disease.

A
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* Diagnosed with Pernicious Anemia in 1992, "celebrating" 14 years of monthly B12 injections
* Self-diagnosed with celiac disease in 2006
* Waiting list for apointment with a GI specialist for official testing
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#2 tiffjake

 
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Posted 17 March 2006 - 03:00 AM

I was also diagnosed with pernicious anemia. About 6 years ago I was so low on B12 that I was sleeping nearly 14 hours a day and had bad chest pains. After my doc figured it out I was sleeping better and no more chest pains. I was also ALWAYS cold, and lived in sweaters before. No longer. Actually, since going gluten-free I don't have pernicious anemia anymore. I don't know what kind of sense that makes. But the last time I went to the doc and he checked my levels (with no B12 injection for 4 months) everything was normal. He thinks that I was not absorbing the B12 because of the bad stomach problems. I don't know, but I am watching things and getting my levels tested every 6 months to make sure. Hope that helps you! Tiffany
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EnteroLab test positive for gluten intolerence and 2 gluten intolerence and celiac genes
DQ2 and DQ3 sub type DQ7 in December 2005
Gluten-free since Enterolab test, December 2, 2005.

Lame Advertisement Test positive for gluten intolerence in Sept 2005.
THEN found out that my fathers mother had nontropical sprue, she passed away at 40 from (stomach) cancer, had holes in her intestines when they caught it. I had no idea....

#3 specialdiets

 
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Posted 17 March 2006 - 11:16 PM

I was diagnosed with Pernicious Anemia at the same time as Celiac Disease. My doctor thought to check for it because I was complaining of leg cramps or tingling (like they were falling asleep). For five years I have been getting a weekly injection and it really helps. I was having a problem with candida before and that improved on the B12.

Its true the two conditions are related. Celiac Disease causes malnutrition when the villi are damaged which then leads to other problems. The bowel can no longer absorb nutrients. Because my anemia was so severe it caused some permanent neurological damage. The doctors at mayo believe that my dysautonomia was caused by the lack of B12. So, every Celiac should definitely get tested for it. Pernicious anemia is an autoimmune disease that is lifelong. However, if the bowel heals from a gluten free diet it may be able to absorb enough nutrients from foods so that an injection is not needed. Multiminerals and multivitamins are still recommended for the gluten free diet. In my case the anemia was rather severe and I personally find a weekly injection better than taking some big multivitamin every day.


Sunni
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#4 ravenwoodglass

 
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Posted 18 March 2006 - 03:50 AM

Hello,

Am just waiting for my GI apointment but strongly suspect my mysterious symptoms and ailments are related to Celiac Disease.

I was diagnosed with Pernicious Anemia in 1992 and have been receiving monthly B12 injections since then. Have just discovered that many people with Pernicious anemia develop it because of Celiac.

I would be curious to hear from others with pernicious anemia, to see what the relationship is between the two disease states, and how best to optimize managing both.
Sypmtoms from Pernicious Anemia I experience are extreme fatigue, irritation, depression, mood swings (during periods of deficiency) and sleep related problems.

Am wondering how many of these symptoms could be better controlled through a gluten-free diet and are inter-related with celiac disease.

A


Both my Mom and I were told we had this. Mom got shots monthly for most of her short life. She died of celiac related cancer almost 30 years ago when I was 20. I've been gluten-free over 3 years now, I desperately needed B12 supplementation before diagnosis, however within a year I was able to absorb it fine without using sublingual or shots. Conclusion, my intrinsic factors were fine, probably always were it was my celiac damaged intestines that were the problem.
  • 0
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#5 Deej

 
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Posted 18 March 2006 - 10:49 AM

I was admitted to Emergency about six months following the Celiac diagnosis with the symptoms of a heart attack. The admitting physician wondered how I had been walking around given that the blood work showed me so deficient in B12 that he'd never seen anything like it.

All these years later I still have a monthly B12 shot and take folic acid and B6 supplements.
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#6 trents

 
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Posted 18 March 2006 - 09:44 PM

Were you guys aware that mega oral doese of B12 (1000-2000 mcg daily) is also effective in treating pernicious anemia? Thought you might like to know as that is now an acceptable alternative to shots.
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#7 covsooze

 
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Posted 19 March 2006 - 02:46 AM

Is pernicious anemia inherited? My grandmother had it and I wonder whether it could be the cause of some of my symptoms: exhaustion, depression, aching, palpitations, cramps, mood swings. What's the difference in symptoms from ordinary anemia (which I know is a problem for me)? I don't know if the dr has ever tested for pernicious anemia. What is the test?
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Susie from Coventry, UK

IBS & GERD 2000
Screened for coeliac disease as sister has it - negative blood test
Nov 2005 positive blood tests
January 2006 dx by biopsy
gluten-free and dairy lite since then
I am also neutropenic, anaemic and have hypothyroidism
Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

#8 ravenwoodglass

 
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Posted 19 March 2006 - 04:50 AM

Were you guys aware that mega oral doese of B12 (1000-2000 mcg daily) is also effective in treating pernicious anemia? Thought you might like to know as that is now an acceptable alternative to shots.



With true pern.ane. the body lacks something called the intrinsic factor, this prevents the stomach and intestines from utilizing the B12 found in food. Celiacs on the other hand do not lack the intrinsic factor but the damage to the intestines prevents the vitamin from being absorbed. Mega oral doses may have some effect but the best oral way to absorb this vitamin for both who are deficent is sublingual or shots. For myself the sublingual was the best option and I continued with it for about a year after celiac diagnosis, I now take the oral mega B's and absorb them well.
  • 0
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#9 Robix

 
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Posted 20 March 2006 - 06:03 PM

Is pernicious anemia inherited? My grandmother had it and I wonder whether it could be the cause of some of my symptoms: exhaustion, depression, aching, palpitations, cramps, mood swings. What's the difference in symptoms from ordinary anemia (which I know is a problem for me)? I don't know if the dr has ever tested for pernicious anemia. What is the test?


Hi there,

Yes it can be - but unfortunately they still don't know much about the real causes of true pernicious anemia (where one lacks intrinsic factor, the enzyme which allows the body to recognize and absorb B vitamins). The test to see if you lack intrinsic factor is called the schilling test and it is often inconclusive. Essentially they make you pee in a little recepticle that you have to drag around with you for 24 hours, while administrating mega doses of oral and intramuscular B12. Then they test your pee to see what stuck to you (in a nutshell).

Good luck
  • 0
* Diagnosed with Pernicious Anemia in 1992, "celebrating" 14 years of monthly B12 injections
* Self-diagnosed with celiac disease in 2006
* Waiting list for apointment with a GI specialist for official testing
Carpe Diem

#10 beelzebubble

 
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Posted 27 March 2006 - 12:12 PM

would you say that testing your b-12 levels is enough to rule out pernicious anemia? i ask because i take a multi vitamin, a b complex and a sublingual b-12 daily and when my b-12 was tested it was within normal range. i mean, i'm taking like 10,000% of the us rdi of b-12. i was expecting my b-12 levels to be on the high end of normal, not the low end.

both my grandfather and my sister had pernicious anemia and when i started having weird heart issues and tingling in my hands and feet, i started to wonder...

do you think i should ask my doctor to check my instrinsic factor instead of checking my b-12?
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#11 slpinsd

 
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Posted 31 March 2006 - 04:19 PM

I also had a severe vitamin B-12 deficiency, and I am on injections. I do NOT have pernicious anemia, though. Testing B-12 levels is not enough to diagnose Pernicious Anemia. Correct that pernicious anemia is where you lack the intrinsic factor to absorb B-12. Your doctor would have to test anti-parietal cell antibodies to see if you have Pernicious Anemia, and I there is another test but I don't remember exactly what it's called. If it is not pernicious anemia, they need to rule out other causes of the B-12 deficiency- intestinal bacterial overgrowth, gluten intolerance, Celiac, Crohn's, dietary (rare). Whatever the reason, they are both treatable through injections. My doctor said that the oral B-12 were not absorbed as well as the shots.

From what I've read Pernicious Anemia is most common in women of scandinavian heritage:)
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Weak positive bloodwork (IgG only)
"Mild flattening of villi" noted on endoscopy, but negative biopsy
Positive response to gluten-free Diet 1/14/06
Diagnosed gluten intolerant by Enterolab
HLA-DQB1*0201, 0201 (HLA-DQ2, DQ2)- 2 Celiac Genes
Vitamin B-12 deficiency
Have not received Celiac Diagnosis based on negative biopsy

#12 Rusla

 
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Posted 31 March 2006 - 04:43 PM

I had pernicious anemia undiagnosed for over a year because one doctor said it was the flu or menopause (which it wasn't). Then I saw the GI who refused to look into thyroid (which is in the family) or anything else. That is because "it was all in my head" that is why I had to have iron infusions in the hospital. I could not take normal iron pills because I could not absorb it so I was on shots until I discovered sublingual (under the tongue) B-12 tablets. They could have discovered all of this a very long time ago but they were too busy telling me I was crazy
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Rusla

Asthma-1969
wheat/ dairy allergies, lactose/casein intolerance-1980
Multiple food, environmental allergies
allergic to all antibiotics except sulpha
Rheumitoid arthritis,Migraine headaches,TMJ- 1975
fibromyalgia-1995
egg allergy-1997
msg allergy,gall bladder surgery-1972
Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease
gluten-free totally since Nov. 28, 2005
Hashimoto's Hypothyroidism- 2005
Pernicious Anemia 1999 (still anemic on and off.)
Osteoporosis Aug. 2006


Creative people need maids.

#13 BRUMI1968

 
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Posted 21 May 2006 - 04:49 PM

My doc said pernicious anemia AND celiac disease, but they ddin't check my urine for anything...it sounds like they should've said vast deficiency in B12, probably caused by celiac disease but perhaps then testing for P.Anemia. Anyway, have had one shot and it didn't seem to help too much; take sublingual every day, also not helping too much (with the extreme fatigue, irritation, and brain fog). Do you have to catch up -in other words, does it take a while to take affect?
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#14 rafrockabilly

 
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Posted 05 December 2012 - 10:22 PM

Massive oral B12 doses did nothing for me. They'll do nothing if you have issues with intrinsic factor. Shots are the sure-fire way to go. I'm off my insurance so I just buy shots online and self-administer. My doctors were worthless anyway. I only caught this because I demanded tests. Then I told them I wanted shots and they gave me some BS about a B12 shot shortage - seriously?- I can just buy them online people. I was kind of afraid of doing it myself though so first I tried the massive oral doses - did nothing. Then I tried sublinguals- helped but my symptoms came back even while taking them regularly. So I did the shots and they work like a charm. It's a lot easier to do than I thought too.
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