13 replies to this topic

[Robix]

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

[tiffjake]

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

[specialdiets]

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

[ravenwoodglass]

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.

[Deej]

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.

[trents]

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.

[covsooze]

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?

[ravenwoodglass]

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.

[Robix]

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

[beelzebubble]

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?

[slpinsd]

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:)

[Rusla]

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

[BRUMI1968]

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?

[rafrockabilly]

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.