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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Pernicious Anemia
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15 posts in this topic

I am wondering if there is a connection between pernicious anemia and celiac disease. I was tested for celiacs disease and the test was negative. Testing for pernicious anemia was positive. I know when I diet I feel much better and what ever the diet I usually end up limiting my bread type foods. I just wonder if anyone has a suggestion on the testing that is done for celiacs. Or has any knowledge of this.

Linda

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What kind of tests were done? And what was your diet in the 3 to 6 weeks leading up to the tests? Were you ingesting heavy amounts of gluten or were you "gluten lite" before the tests? Current thinking is that the tests are not as reliable as once thought. There is a very high incidence of false negatives with the current tests. You might want to try Enterolab. A little pricey, I want to do it when I have money (have one child in college=no money for mom) just for the genetic part. However, you can go gluten free w/o dr's permission and see how you do - it is your body and you can determine just how much better you feel off of gluten as opposed to ingesting it.

Hope this helps some.

Annette

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Thanks for your ideas. I was looking at the enterolab site. Not sure I want to spend that money either. I have 2 sons in college. I don't pay for much except they live with me so I guess that helps them. I only remember he doctor saying he would test me for it (celiac) and then later saying it was negative. He also did testing for ANa and Igg Igm Iga. The ana was high and the Igg but others were negative. I eventually was retested on the ANA and it was more in the normal limits. But two times before the ANA was high. I don't remember what my diet was during testing. When I diet usually I eat protein vegtables, fruit. The thing that strikes me most reading is I have my waist bands cut on all my underwear and pants. I can't stand anything around my waist with any tightness. I feel bloated all the time. I also have inner ear disease which causes vertigo and loss of balance. I know I have to just continue and bug doctor until I get answers. I am probably going to do the enterolab as I can't get help using the doctor as much as I would like.

What kind of tests were done? And what was your diet in the 3 to 6 weeks leading up to the tests? Were you ingesting heavy amounts of gluten or were you "gluten lite" before the tests? Current thinking is that the tests are not as reliable as once thought. There is a very high incidence of false negatives with the current tests. You might want to try Enterolab. A little pricey, I want to do it when I have money (have one child in college=no money for mom) just for the genetic part. However, you can go gluten free w/o dr's permission and see how you do - it is your body and you can determine just how much better you feel off of gluten as opposed to ingesting it.

Hope this helps some.

Annette

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Ana bloodtest is to check for inflammation in your body.If it is postive they usually recheck it to make sure. Then they start ruling out disease's that cause inflammation..

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Anemia is one of the more common symptoms of celiac disease. For some people it was the only obvious symptom. Since being gluten-free makes you feel better, that may be the only evidence you ever get, unfortunately.

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I just got off the phone with the Iron Institute. The woman I spoke with said that anemia was very common in celiac. She was very informative. If you need some questions answered just go to their website and there are phone numbers you can call and talk with a real person.

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There is absolutely a link between the two. As has been stated here, anemia is probably one of the most common complications of Celiac. Typically, once someone with Celiac goes on a gluten-free diet, their anemia will disappear. However, depending on how severe someone's is...they may need "help" getting back to normal. My anemia had to be corrected with an infusion.

If you are asking about how to get tested for Celiac...its pretty simple. First, have a blood panel drawn, if the tests are positive, your doc will probably suggest a biopsy/endoscopy. Here is the full panel below:

Serologic Tests

AEA (Immunoglobulin A anti-endomysium antibodies)

AGA (IgA anti-gliadin antibodies)

AGG (IgG anti-gliadin antibodies)

tTGA (IgA anti-tissue transglutaminase)

Helpful summary: http://www.gluten.net/celiac.html

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Wow thanks eveyone for the great replies. I will continue figuring this out. Its slow but I think I will eventually know what has been going on. So many of you have struggled with this. Its really ashame its not easier to get answers.

Linda

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I am wondering if there is a connection between pernicious anemia and celiac disease. I was tested for celiacs disease and the test was negative. Testing for pernicious anemia was positive. I know when I diet I feel much better and what ever the diet I usually end up limiting my bread type foods. I just wonder if anyone has a suggestion on the testing that is done for celiacs. Or has any knowledge of this.

Linda

I had pernicious anemia for years and had to take weekly B12 shots. (Do you have pernicious anemia? It is important to note to others that pernicious anemia, or megaloblastic anemia, is a B12 shortage, not an Iron shortage). After finding out about celiac disease, and going gluten-free, my b12 level had leveled out on its own (guess I am absorbing all of the b12 now?). I have my levels check often just to be sure. I just wanted to throw my story out there. I think I appeared anemic because of all of the D, but was able to correct itself once my body was not bombarded with gluten. Good luck to you! Also, JenVan suggested the right tests to ask your doc for. But you have to be eating the breads and stuff for it to show positive because it is a REACTION to the gluten you are eating. So if you were cutting out the breads, like you said, when you had that test, you may have had a false negative. Just a thought. Tiff

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...I should better clarify my previous post. I did not have pernicious anemia...however pernicious and typical iron anemia can both be complications of untreated Celiac. The link I posted earlier is a description of pernicious anemia and lists Celiac as one of the potential causes.

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I am wondering if there is a connection between pernicious anemia and celiac disease. I was tested for celiacs disease and the test was negative. Testing for pernicious anemia was positive. I know when I diet I feel much better and what ever the diet I usually end up limiting my bread type foods. I just wonder if anyone has a suggestion on the testing that is done for celiacs. Or has any knowledge of this.

Linda

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I am wondering if there is a connection between pernicious anemia and celiac disease. I was tested for celiacs disease and the test was negative. Testing for pernicious anemia was positive. I know when I diet I feel much better and what ever the diet I usually end up limiting my bread type foods. I just wonder if anyone has a suggestion on the testing that is done for celiacs. Or has any knowledge of this.

Linda

yessss, its all related to celiac, thats what i think so. i'd been suffering from p. anemia for more than 12 years. nobody knew why i was so low in HB. you will be surprise to know that whenever i was checked for HB, it was in between 60-80. i consulted so many physicians. no body detected it was all due to celiac. because of celiac i couldnt growup well. when i came here in canada i told my family doc. bout my HB. he got some couple of blood test n some xrays n some other stuff :D . n then he told me im deficient in B12 too. that too at alarming level. after a couple of months i was diagonosed for celiacs. one more thing every two or three months i got diarhea. even when i was diagonosed with celiac i was suffering frm diarhea for more than two months continuously.

i'd desire to build good body. i spent three four years in gym. but nothing happened. my instructor told me it s all due to my low HB. because red blood cells carry oxygen to our muscles. that plays major role in growing up body muscles. i was so discouraged that i cant tell u just in few sentences. but to my surprise, as soon as i left eating wheat. my HB hit upto 170 mark within a month. there was some extra kind of shine on my face n on my body within two months. i started gym again. and within six months i got noticiable change in my body. yes it was noticiable.......... every body in gym was asking me ''do u take steroids'' my answer was ''yes,i do take gluten free steroids''. my stomach specialist put me on B12 INJECTIONS for one two months to gain the huge lose. n after that im on my SPECIAL diet. n m maintaing my B12 LEVELS NOW.

yes i wanna tell u how to absorb more iron in ur body. thats what i got through numorous consultations with my dieticians n reading lot of books. i m damn sure it will work on u too.

first of all start drinking vitamin c in the form of orange juice or lime juice(orange preferably) with ur food.

dont drink it whole after ur meal. but drink it five-six times sip by sip in one meal(THE LOGIC IS VITAMIN C HELPS ABSORBING MORE IRON IN OUR BODY)

Eat more salads with ur meals (THE LOGIC IS IT HELPS FOOD TO DIGEST SLOWLY N INCREASES NUTRIENTS TO BE ABSORBED IN MORE QUANTITIES)

start eating red meat in some quantities every day if not possible every other day.(THE LOGIC IS IRON IN RED MEAT IS THE MOST ABSORBABLE FORM N THERES LOT OF IRON IN RED MEAT;u'll find drastic changes in ur HB LEVELs within weeks)

start eating sprouted peas(black ones) every day in fasting. 40-50gms is enough.this is the power house.

n last but not least get rid of coffee, tea, n especially cold drinks(coke,pepsi etc...)

bout exercise (gyming is not mandatory......cardio is enough if u can) i'll better keep quite. caz u know the importance n its benifits.

i gotta sleep now. rest next time...........n tell me the results please.........after one month....

9

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glad i found this post! ive been doing a lot of research in regards to a b12 deficiency and celiac. there is a lot over in the peripheral neuropathy thread, and rose is the expert. you may want to check that out. in regards to your #;s:

1. an isolated b12 deficiency is not necessarily pernicious anemia, and pernicious anemia and b12 deficiencies do not necessarily cause a true "anemia"

2. Celiac disease can definitely cause a vitamin b-12 deficiency. however, according to my doctor, b12 is absorbed in the ileum, the end of the small intestine. Celiac usually starts at the top of the small intestine and then works it's way down, so you would usually get iron deficiency anemia first. my doctor believes you would have to have gross damage to progress to a b-12 deficiency.

3. other diseases like crohn's, intestinal bacterial overgrowth can cause a b-12 deficiency. it is rarely caused by diet alone unless you are a longstanding vegan.

4. Celiac does not cause true "pernicious anemia", but it can cause b-12 deficiency, which some doctors loosely call pernicious anemia. And yes, as you heal, you start absorbing better, and if your b-12 status is low, should improve.

5. true PA is auto-immune. the body destroys the cells that produce intrinsic factor, resulting in poor or no absorption of b-12. there is a genetic component.

6. low stomach acid and h.pylori can also cause some degree of b-12 malabsorption.

7. b12 def can be diagnosed by serum levels. also there are other hematologic markers.

8. 90% of people with PA have antiparietal cell antibodies, 50% or so have anti-intrinsic factor antibodies. these are the tests used to help diagnose PA. Also, the Shilling's test can be used to discover the cause of the malabsorption.

9. Having PA increases your risk of having other autoimmune diseases, such as Celiac.

10. PA is more commonly diagnosed after the age of 50, but can occur in younger people and juveniles.

11. you are at higher risk if you are scandinavian, a woman, or northern european.

I've had many many many symptoms improve on the b12 injections. my initial count was severely low....a 48!!! my dr. did not do anti-intrinsic factor antibodies w/ my workup, so the PA diagnosis is on hold until i go in for that. if antiparietal/antiintrinstic factor are both negative, i will have a shilling's test.

my biopsy was neg for celiac/crohn's, and bloodwork only IgG positive. i just know i'm so much better off gluten.

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4. Celiac does not cause true "pernicious anemia", but it can cause b-12 deficiency, which some doctors loosely call pernicious anemia. And yes, as you heal, you start absorbing better, and if your b-12 status is low, should improve.

5. true PA is auto-immune. the body destroys the cells that produce intrinsic factor, resulting in poor or no absorption of b-12. there is a genetic component.

I've had many many many symptoms improve on the b12 injections. my initial count was severely low....a 48!!! my dr. did not do anti-intrinsic factor antibodies w/ my workup, so the PA diagnosis is on hold until i go in for that. if antiparietal/antiintrinstic factor are both negative, i will have a shilling's test.

my biopsy was neg for celiac/crohn's, and bloodwork only IgG positive. i just know i'm so much better off gluten.

I'm glad you said this. My doc told me I had pernicious anemia as well, but when I looked it up, I realized I had not even been tested for it. What she should've said was that I had a severe lack of B12. I wonder why doctors can't just say it like it is.

Let us know how your other tests go...I tested positive for Celiac so probably that's why I have the B12 issues, but I'd be curous to find out about your antiparietal/etc....stuff.

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As far as I understand, Pernicious Anemia is NOT related to Celiac. Pernicious Anemia is caused by a lack of instrict factor, and is not simple malabsorption caused by damaged intestinal villi, as present in Celiac Disease. For instance, I have difficulty absorbing Vitamin B12 because of my Celiac Disease and have to get B12 shots monthly, but tested negative for Pernicious Anemia. Simple Vitamin B12 Deficiency Anemia is not the same as Pernicious Anemia. Basically what I'm trying to say is that the reasons for B12 deficiency in each case are different. Pernicious Anemia is caused by the lack of instrict factor while Celiac patients have a difficult time absorbing fat soluable vitamins, such as the B vitamins, iron, beta-carateen, and calcium because of damaged intestines.

Of course with that being said, heaven only knows how many illnesses are related to Celiac Disease.

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