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Pernicious Anemia Too?


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#1 Electra

 
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Posted 03 May 2007 - 04:58 AM

Ok I know it's been a while since I've been here, but I had two deaths in my family, a neighborhood house burned down, one of my sons friends had to be rushed in for cancer again, I transfered my son to a new school, and we enrolled ourselves in way too many sports this spring lol!! There's more, but I wouldn't want to bore anyone lol!!

I went to the GI specialist a couple of weeks ago and they told me that I not only have Celiac, but I also have Pernicious Anemia (surprise, surprise). I explained to the dr. that from what I've read B12 deficiency is very common amoung Celiac Patients and he says he has NEVER had a case of anyone who's had TWO RARE conditions. From what I read a lot of people who have Celiac end up with other autoimmune dificiency problems, but my dr. says that Celiac is in the intestines and Pernicious Anemia is in the stomach. Could this possibly be my Celiac, or do I really have Pernicious Anemia. Has anyone ever had their B12 go back up after going gluten free and not had to have B12 shots for the rest of their lives.

Aside from eating liver YUK what else can I do to help bring my B12 levels up? I'm exhausted and everyone I talk to says they get about a days worth of energy after a B12 shot and I came home and was so tiered that I wanted to take a nap. I felt NOTHING from it, as a matter of fact, that's why I stopped having B12 shots years ago because they did nothing for me. Man this stinks.

Celiac Disease, Pernicious Anemia, and Narcolepsy - Talk about being a walking ZOMBIE!! Am I ever going to have energy again, or should I just throw in the towl?

I've gained 20 pounds since going gluten free (which I did not need to gain) and I've been dieting for weeks and lost only 3 pds. I mean serious NO CHEATING, only eating fruits and veggies and less then 800 calories a day dieting, and I've only lost 3pds. I think eating gluten was better then starving to death and still gaining weight.

What in the world will I have to deal with next?
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~~Angie~~

DX'd With Narcolepsy In 1995
Dx'ed With Celiac On 12-18-06
Positive Biopsy On 2-1-07
DX'd With Pernicious Anemia 4-24-07
Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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#2 TrillumHunter

 
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Posted 03 May 2007 - 05:40 AM

POPPYCOCK! Pernicious anemia was the first thing I presented with at 25. If he has never treated anyone with pernicious anemia and celiac----well, maybe it's time to move on. It doesn't matter if you have the enzymes to covert the b12 or not if your intestines are too damaged to absorb it. I still take the shots but I am hopeful my intestines will heal enough to stop eventually.

Your body normally stores about five years worth of b12. You are so depleted now that you are using up everything you get. It takes a while to restock. I take monthly shots and my level should be off the charts But it runs about midway between the normal levels. I would encourage you to take care of it because left untreated it can cause permanent nerve damage and even death. It is serious and needs to be treated. It isn't RARE either. (unless you haven't picked up a journal article in the last 15 years :angry: )

Take care of yourself!
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#3 Jestgar

 
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Posted 03 May 2007 - 07:48 AM

Celiac Disease, Pernicious Anemia, and Narcolepsy - Talk about being a walking ZOMBIE!! Am I ever going to have energy again, or should I just throw in the towl?

Usually when you throw in the towel you realize that it wasn't the right choice after all and THEN you have to go find the stupid towel, wash it (because by then it's been trampled all over) and hang it up to use again.

Much easier to just hang on to it.

Missed you Electra, glad you're back.
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#4 ravenwoodglass

 
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Posted 03 May 2007 - 07:49 AM

My B12 levels at diagnosis were extrememly low. I used sublingual B12 for the first year or so post diagnosis but am now able to go without supplements and my B12, folate and iron are back in good levels. For me the Gluten Free diet was all I needed after I had healed.
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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 2kids4me

 
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Posted 03 May 2007 - 08:05 AM

he says he has NEVER had a case of anyone who's had TWO RARE conditions.


hmm, then maybe he hasnt looked. See my signature we are a cluster of autoimmune conditions - in the same person and all in the family.

Doctors fall into a trap sometimes - initially when taking my daughter in for exams etc - they always wanted to attribute clinical signs to the one diagnosis - til it becme apparent my kids and I never read that chapter in medicine that says : co-existing conditions are rare.

It is actually NOT rare to have pernicious anemia in association with Celiac or hypothyroidism or diabetes......... there are specialized cells in the stomach (parietal cells) that produce an intrinsic factor that allows B12 to be absorbed.
Other causes of low levels of intrinsic factor (and thus of pernicious anemia) include atrophic gastric mucosa, autoimmunity against gastric parietal cells, and autoimmunity against intrinsic factor.

Risk factors include a family history of pernicious anemia, Scandinavian or Northern European descent, and a history of autoimmune endocrine disorders. Pernicious anemia is seen in association with some autoimmune endocrine diseases such as type 1 diabetes, hypoparathyroidism, Addison's disease, hypopituitarism, testicular dysfunction, Graves disease, chronic thyroiditis, myasthenia gravis, secondary amenorrhea, and vitiligo.

Sandy
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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

#6 georgie

 
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Posted 03 May 2007 - 02:03 PM

What a silly Dr. I have PA, Celiac and Hashimotos Thyroid. All dx within a month by my Dr once she dx Hashimotos Thyroid. Of course they go together as they are all autoimmune diseases. If you have true Pernicious Anaemia you will need shots for life and a correct Loading Dose to start with as well. The Loading Dose( 2 x week) restores the liver reserves , and then you go to Maintainance Dose of 1 x month. Have you had testing for Intrinsic Factor, and Parietal Cell Antibodies ? The blood test for IF and PCA is 50% accurate only - but I tested positive immediately.

If you have PA you should have Endoscopies every 2 years too - to check for stomach cancer. People with PA are advised to do this as the risk for stomach cancer is 4%. Certainly be aware - and check at first sign of stomach symptoms or pain.

This is a good link that explains Polyglandular Autoimmune Syndrome

http://www.emedicine...d/topic1868.htm
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Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.
Diagnosed June 2006 with adrenal insufficiency.
Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.
Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.
Trialled Dairy Free Diet and reacted positively to that challenge in January 07.
News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !
Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

#7 Electra

 
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Posted 03 May 2007 - 02:07 PM

My GI specialist did admit that he is not a "Celiac Expert" he said that if he was then he may have seen another case like this, but he says he's seen many patients with Celiac but he's never seen any that have another rare autoimmune difficiency. I explained to him that one of the symptoms of Celiac is actually B12 deficiency (from what I have read) and that many people with Celiac end up having other autoimmune difficiency issues, and he said he had never heard of that, but he would definitely research it. He said he was curious because he would like to tell me that I will not have to take B12 shots once we get my B12 up, but as far as he knows once you are deficient you are deficient for life. Ah well alas we shall see. I'm going to try and get some oral B12 to take along with my shots. Supposably you can't OD on B12 so it can't hurt anything right lol. I'm having lots of pain today in my right and left sides. It's very uncomfortable and I'm not sure what in the world is up, but it's not feeling good. I can't sit or it feels like there is a knife lodged in my side under my ribcage. I'm going to lay down again to see if I can get it to go away. UG this stinks!!
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~~Angie~~

DX'd With Narcolepsy In 1995
Dx'ed With Celiac On 12-18-06
Positive Biopsy On 2-1-07
DX'd With Pernicious Anemia 4-24-07
Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

#8 jcc

 
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Posted 07 May 2007 - 07:23 AM

I went to the GI specialist a couple of weeks ago and they told me that I not only have Celiac, but I also have Pernicious Anemia (surprise, surprise). I explained to the dr. that from what I've read B12 deficiency is very common amoung Celiac Patients and he says he has NEVER had a case of anyone who's had TWO RARE conditions. From what I read a lot of people who have Celiac end up with other autoimmune dificiency problems, but my dr. says that Celiac is in the intestines and Pernicious Anemia is in the stomach. Could this possibly be my Celiac, or do I really have Pernicious Anemia. Has anyone ever had their B12 go back up after going gluten free and not had to have B12 shots for the rest of their lives.



Hi Electra~

Oh my~ Neither pernicious anemia or celiac disease are rare!

Yes, B12 deficiency can result from celiac disease, and may self correct over time. HOWEVER, it is equally possible that you also have pernicious anemia, and will need B12 for the rest of your life. There are antibody tests for pernicious anemia, although they say 25% of those with pernicious anemia will not have positive antibody tests. B12 deficiency is nothing to fool around with, as left untreated it can cause neurological damage and other symptoms that could be permanent.

You do have the option of taking oral B12 rather than the shots. Studies have shown oral B12 to be as effective as the shots, even in those with malabsorptive issues. Still, there are some who will say that oral B12 doesn't work for them and they need the shots, and I have no reason not to believe them. There are always exceptions. Still, you might try the oral B12 and see if your B12 level comes up with that. Its cheap... about $8.00 for a three month supply, and a lot easier than shots. Just look for the methylcobalamin type of B12 (you may need to order from an online vitamin store, but most health food stores now carry methlcobalamin), and take 1000-2000mcg daily.

I'm exhausted and everyone I talk to says they get about a days worth of energy after a B12 shot and I came home and was so tiered that I wanted to take a nap. I felt NOTHING from it, as a matter of fact, that's why I stopped having B12 shots years ago because they did nothing for me.


I was dx'd B12 deficient about six years ago, before I discovered I might be gluten sensitive. My doctor started me on the oral supplementation, and my B12 level came up to normal within months. However, for the first several months I suffered a 'hit by a truck' fatigue. I felt drugged. Totally exhausted. Turns out, that is not uncommon in those in the early phases of recovering from a B12 deficiency.

I tested negative to the antibody testing for pernicious anema (anti-intrinsic factor, anti-parietal cell) and the antibody testing for celiac disease/gluten sensitivity (anti-tTG, antigliadin). Symptom improvement has convinced me I am gluten sensitive. I am highly positive for Hashimoto's thyroid disease (anti-TPO), which actually came first for me. These things frequently come together. Have you been tested for thyroid disease (especially if you are fatigued?).

In any case, because I was negative for the pernicious anemia antibodies, I decided perhaps it was the underlying gluten sensitivity that had caused my B12 deficiency. I stopped taking it, and within weeks my symptoms began to emerge (for me, most were neurological). I won't make that mistake ever again. The oral B12 is so simple to take.

Please don't make the mistake of stopping the B12 and forgetting about it. Bringing the level back up to normal doesn't mean it will stay there. So, once you have been low in B12, don't stop taking it without monitoring it closely. Easier to just take the oral B12 :).

I have accumulated lots of info about B12 deficiency~ please check it out~ it includes info on oral dosing, celiac and B12 deficiency, pernicious anemia, etc~

http://jccglutenfree...m/b12deficiency

Also check out this page... especially the right bar~
http://jccglutenfree...ethyroiddisease


Good luck!

Cara
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#9 Ksmith

 
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Posted 07 May 2007 - 07:43 PM

I second that...get your thyroid checked! Make sure they do the proper testing too. FOr more info. on the types of labs to get done go to
www.stopthethyroidmadness.com

The website has helped me feel normal again!
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#10 Electra

 
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Posted 08 May 2007 - 05:04 AM

Ok guys you have convinced me to get my thyroid checked. I'm also going to have him re-check my B12 to see if that number is rising at all.

My mother actually has thyroid issues, so she may be the one in my family that has Celiac, but since she's dragging her feet getting tested we may never know UG!!

I've printed out some sheets from your thyroid sites to take to the doctor with me so I know what tests to ask for. I'm going to my family doctor, because he will test me for anything I want to be tested for. He's AWESOME when it comes to that stuff.

My appointment is next Tuesday afternoon, so hopefully I can get the tests done that day or shortly after. Wish me luck!!
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~~Angie~~

DX'd With Narcolepsy In 1995
Dx'ed With Celiac On 12-18-06
Positive Biopsy On 2-1-07
DX'd With Pernicious Anemia 4-24-07
Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

#11 Ksmith

 
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Posted 08 May 2007 - 08:00 AM

Ok guys you have convinced me to get my thyroid checked. I'm also going to have him re-check my B12 to see if that number is rising at all.

My mother actually has thyroid issues, so she may be the one in my family that has Celiac, but since she's dragging her feet getting tested we may never know UG!!

I've printed out some sheets from your thyroid sites to take to the doctor with me so I know what tests to ask for. I'm going to my family doctor, because he will test me for anything I want to be tested for. He's AWESOME when it comes to that stuff.

My appointment is next Tuesday afternoon, so hopefully I can get the tests done that day or shortly after. Wish me luck!!


I do wish you luck! Make sure he tests for the thryoid antibodies as well as free T3 and free T4. You may want to look into adrenal fatigue as well--this can cause your thyroid number to appear normal in labs. When you get your labs results back, you can always post them (include the ranges) in the forum at stopthethyroidmadness and they'll help you interpret them. Good luck!
~K
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#12 loraleena

 
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Posted 08 May 2007 - 10:15 AM

Definitely get your thryoid checked. Especially the Thyroid Peroxidase antibodies. They should be below 20. The normal range for TSH is .3-3. If you have anything over 2 you need help. The tsh is very innacurate. All my tests were normal except the antibodies. This meant I had Hashimotos autoimmune hypothyroidism. Check out dr.Lowe.com also. You should do a saliva test for your adrenals as well. 800 calories is not enough food to keep your metabolism going. You need to be eating at least 1200. Not only may your metabolism be screwed up by your thyroid, but to little caloric intake is driving it even lower. Oh yeah - don[t let your doctor give you synthroid for hypo. You need to take Armour. You can read about it at drlowe.com. Good luck.
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#13 Roberta8

 
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Posted 08 May 2007 - 10:12 PM

After 10 years of Synthroid I started alternating it with Armour Thyroid and I am SO ANGRY with every doctor who told me to take Synthroid because it has been AWFUL. If you want to feel NORMAL again you need to take something that has all of the components (or as close as you can get) to your own thyroid's productions. www.armourthyroid.com was where I made sure I knew what I was doing. I titrated myself from 100mcg of Synthroid to 60 mg of Armour. I don't know where these doctors are getting their post doctorate info...I imagine from drug company hype and free samples.

I always consider that they have many patients, but I have one, ME. So I do tons of homework before I even bother with them anymore. I manage my anemia and D deficiencies with the initial help of a doctor and now with OTCs, including folic acid and 2 types of B complexes. I especially like TwinLab Stress B. Take that twice a day, a multi with minerals every 12 hours...a lifetime of working up to a regimen that actually stopped my hair from falling out and finds me a little closer to normal than I ever thought I would be again. Most importantly it keeps me out of and away from doctors offices and waiting rooms, where I swear I picked up more germs than anywhere else!

Good luck and feel better!
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#14 Ms. Skinny Chic

 
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Posted 02 December 2008 - 08:35 AM

Hi Electra~

Oh my~ Neither pernicious anemia or celiac disease are rare!

Yes, B12 deficiency can result from celiac disease, and may self correct over time. HOWEVER, it is equally possible that you also have pernicious anemia, and will need B12 for the rest of your life. There are antibody tests for pernicious anemia, although they say 25% of those with pernicious anemia will not have positive antibody tests. B12 deficiency is nothing to fool around with, as left untreated it can cause neurological damage and other symptoms that could be permanent.

You do have the option of taking oral B12 rather than the shots. Studies have shown oral B12 to be as effective as the shots, even in those with malabsorptive issues. Still, there are some who will say that oral B12 doesn't work for them and they need the shots, and I have no reason not to believe them. There are always exceptions. Still, you might try the oral B12 and see if your B12 level comes up with that. Its cheap... about $8.00 for a three month supply, and a lot easier than shots. Just look for the methylcobalamin type of B12 (you may need to order from an online vitamin store, but most health food stores now carry methlcobalamin), and take 1000-2000mcg daily.



I was dx'd B12 deficient about six years ago, before I discovered I might be gluten sensitive. My doctor started me on the oral supplementation, and my B12 level came up to normal within months. However, for the first several months I suffered a 'hit by a truck' fatigue. I felt drugged. Totally exhausted. Turns out, that is not uncommon in those in the early phases of recovering from a B12 deficiency.

I tested negative to the antibody testing for pernicious anema (anti-intrinsic factor, anti-parietal cell) and the antibody testing for celiac disease/gluten sensitivity (anti-tTG, antigliadin). Symptom improvement has convinced me I am gluten sensitive. I am highly positive for Hashimoto's thyroid disease (anti-TPO), which actually came first for me. These things frequently come together. Have you been tested for thyroid disease (especially if you are fatigued?).

In any case, because I was negative for the pernicious anemia antibodies, I decided perhaps it was the underlying gluten sensitivity that had caused my B12 deficiency. I stopped taking it, and within weeks my symptoms began to emerge (for me, most were neurological). I won't make that mistake ever again. The oral B12 is so simple to take.

Please don't make the mistake of stopping the B12 and forgetting about it. Bringing the level back up to normal doesn't mean it will stay there. So, once you have been low in B12, don't stop taking it without monitoring it closely. Easier to just take the oral B12 :).

I have accumulated lots of info about B12 deficiency~ please check it out~ it includes info on oral dosing, celiac and B12 deficiency, pernicious anemia, etc~

http://jccglutenfree...m/b12deficiency

Also check out this page... especially the right bar~
http://jccglutenfree...ethyroiddisease


Good luck!

Cara




I have pernicious anemia.. I was diagnosed in Germany by my doctor there and here by a hematologist.

My recent level of B-12 was 3,000 ( I take injections at home)

My current doctor wants me to discontinue taking the injections..

I am a bit afraid, because I know the symptoms associated with the illness aren't nice.

The hematologist told me.. I needed to take the injections for life.. and this new doctor is saying something different..

Who do you think is right???

It is my life the current doctor is messing with.. I am kind of pissed..
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#15 MaryJones2

 
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Posted 02 December 2008 - 09:04 AM

Well as you know pernicious anemia is a lifelong condition and your body can't absorb B12 through your digestive system so you have to get it elsewhere and it is most commonly treated via injection. Your B12 level might be fine now but if you have pernicious anemia and stop the injections it will eventually go down. I think your first doctor gave the correct advice. (BTW I don't have it but most of the women in my family do so it's something I'm screened for regularly).
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