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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.

Endomysial Test (ema)
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30 posts in this topic

I have a friend whose husband has all the signs of celiac. I gave her info on the celiac panel for their doctor. He chose to do one test only - the endomysial test. The results were negative.

I understand that the tTg test is the most conclusive one if only one test is done. Anyone agree or disagree with that?

About the endomysial test: anyone had this? What do you think about it? Why would it be given to the exclusion of the full panel or the tTG?

Would any of you consider the endomysial test a definitive answer? Claire

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Sorry I don't have any answers for you. I am just glad to see where you say that the tTg test is the most conclusive test if only one is done. My doctor's asst. won't even tell me WHAT blood test he did and they denied doing a full panel Celiac test before scheduling a biopsy. So when I see the hemotologist tomorrow I hope to find out what test was actually done since he has my records for the consultation. For many reasons, I'm switching to another GI who knows more about Celiac. Mine doesn't know half as much as I do and I only heard of it in Sept. But at least now I will find out if I had the tTg done yet or not.

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I have a friend whose husband has all the signs of celiac. I gave her info on the celiac panel for their doctor. He chose to do one test only - the endomysial test. The results were negative.

I understand that the tTg test is the most conclusive one if only one test is done. Anyone agree or disagree with that?

About the endomysial test: anyone had this? What do you think about it?  Why would it be given to the exclusion of the full panel or the tTG?

Would any of you consider the endomysial test a definitive answer?    Claire

<{POST_SNAPBACK}>

The endomysial is the better test to get. The reason tTG is done more often is because the lab charges twice as much for EMA than tTG ($135 vs $70 as priced by Prometheus Labs). The EMA is also more "operator dependent" meanig the results intrepretation is dependent on the lab that does them and is more difficult to do it right. As with all serological based tests, a negative may not be definitive. In general, to be completely sure of one's condition, the "panel" of tests that should be done are:

serum total IgA

serum tTG and/or EMA IgA

some doctors will also order the genetics test to look for HLA-DQ2 and DQ8 to see if the person even have the genetic predisposition to get celiac disease which is about 99.9%.

and if any of the above tests are abnormal, to get the biopsy done by experienced endoscopist who knows what they are looking for.

Regards

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The tTG test is the most accurate one for celiac you can get. It is actually taking over biopsies for diagnosis with some doctors.

The EMA is another very accurate test but in my opinion should NOT be done alone.

Both of these tests usually detect damage.

The other tests in the complete panel are:

IgA is one of the first to usually elevate unless you are IgA deficient and detects a gluten reaction in the body.

IgG is the least specific and is another one to usually elevate first.

Total Serum IgA which will rule out IgA deficiency.

Without the gene you are 99.9% likely to not get celiac. However, many people do have the gene and do not develop celiac. Also, a very small percentage do not have either of the main genes but another gene. Not all of the celiac genes have been identified yet but there are some people with celiac that have the DQ1 gene and not the DQ2 or DQ8 which is usually found.

And I am not a fan of biopsies...I did not get one because the doctor was so sure I had it. It can rule celiac in but it can't rule it out. It is always a hit or miss because if it is in beginning stages or has sporadic damage they can easily miss it.

Hope this helps out a bit.

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My doctor's asst. won't even tell me WHAT blood test he did and they denied doing a full panel Celiac test before scheduling a biopsy.

<{POST_SNAPBACK}>

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It is your body, you paid for the tests, you have the right to see those tests.  I would ask them if they would prefer to give the medical records to your attorney...  Or tell them, you will only pay for them if you receive them....  It is unreal to me, when I see people on this board denied their medical records.  You have every right to them--ALWAYS.

<{POST_SNAPBACK}>

Is it normal to have to pay for your records? I've requested mine but I was told I have to pay 25 cents for each page. I cant imagine how many pages must be in my file. I dont even think I had a file until 3 yrs. ago and now its *really* thick. They couldn't even give me an idea of how many pages there are so I'm not sure I wanna end up paying hundreds of dollars. :blink:

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Is it normal to have to pay for your records? I've requested mine but I was told I have to pay 25 cents for each page. I cant imagine how many pages must be in my file. I dont even think I had a file until 3 yrs. ago and now its *really* thick. They couldn't even give me an idea of how many pages there are so I'm not sure I wanna end up paying hundreds of dollars.  :blink:

<{POST_SNAPBACK}>

Yes they can and often do charge you for a copy of each page. It can be worth it though.

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Please read the following abstract.

http://www.ncbi.nlm.nih.gov/entrez/query.f...2&dopt=Abstract

The EMA has a higher specificity than the TTg. In other words, a positive EMA can really only be celiac disease. A positive TTg is 92% specific for celiac disease, but can be indicitive of other diseases such as Crohn's. As for me, I only had a EMA test done, which was + and verified on biopsy. My kids had both TTg and EMA done since kids are harder to diagnose (they were - on both, both asymptomatic). HTH.

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Please read the following abstract.

http://www.ncbi.nlm.nih.gov/entrez/query.f...2&dopt=Abstract

The EMA has a higher specificity than the TTg.  In other words, a positive EMA can really only be celiac disease.  A positive TTg is 92% specific for celiac disease, but can be indicitive of other diseases such as Crohn's.  As for me, I only had a EMA test done, which was + and verified on biopsy.  My kids had both TTg and EMA done since kids are harder to diagnose (they were - on both, both asymptomatic).  HTH.

<{POST_SNAPBACK}>

The thing is I think the EMA can have more false negatives so are therefore not as accurate. Please do not get the IgG-tTG and the IgA-tTG mixed up because the IgA-tTG is the specific one and the IgG-tTG is less sensitive.

I have one of the main celiac genes and all my tests came back high including the tTG- except the EMA came back negative.

You may want to read this as well: http://www.clinchem.org/cgi/content/short/...m.2004.035832v1

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Thanks so much for all these replies. I have some reading to do. A little surprised by the differing opinions.

I had sent to my friend the list for the full Celiac panel. The doctor declined and ran just the EMA.

Now we have to decide what she needs to do. Her husband has every Celiac sympton you can imagine - as does his daughter. He also has Addison's disease. We are thinking about going the Kimball lab route but that one doesn't test for the subset - non-celiac gluten sensitivity. Insurance is an issue for them as it was for me. Claire

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Regarding medical records, I found that all my lab work done at Quest Diagnostics Lab is available to me just for the asking - they don't advertise this so one has to ask. They can even pull up copies from several months past. I don't know if other labs do the same, but it would be worth asking.

George

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[

It is your body, you paid for the tests, you have the right to see those tests. I would ask them if they would prefer to give the medical records to your attorney... Or tell them, you will only pay for them if you receive them.... It is unreal to me, when I see people on this board denied their medical records. You have every right to them--ALWAYS.

<{POST_SNAPBACK}>

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Rachel, yeah, I hate that they charge so much. Ask them to fax the records to you locally though or to a doctor that you know will not charge and you may be able to get around it.

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Regarding medical records, I found that all my lab work done at Quest Diagnostics Lab is available to me just for the asking - they don't advertise this so one has to ask.  They can even pull up copies from several months past.  I don't know if other labs do the same, but it would be worth asking.

George

<{POST_SNAPBACK}>

Note that Kimball Lab faxes test results to your doctor and mails a copy to you. Claire

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I supposedly had a Celiac panel blood test done today and they only took one vial of blood. Anyone know if that's all it takes? I was so taken off guard when the hemotologist told me that based on my symptoms he really doesn't think I had celiac disease and by the way, my pcp promised all the paperwork was sent over and (oops!) they didn't send over many many things. Even the anti-body test info wasn't there!!! I was hoping today to find out what the heck test that was!!!! Now I have to call my pcp tomorrow and see if they can tell me.

Anyway, the new doc sheduled my biopsy (with GI he's affiliated with) and I'm cancelling the one with the other GI doc who said he'd biopsy me IF he saw something with the scope. At least the blood doc said you have to take many biopsies because only part of the lining could be damaged. And he said that you can't for sure see the damage. So I know he knows more than the only GI I've seen.

BUT - when I said 'I don't have cancer according to the GI so if I don't have celiac disease what else could be causing the anemia', guess what he said? 'Well you've been menstrating for many years (he knows I have very light cycles since he asked) and all that blood loss does cause some women to become anemic later in life. When you go through menopause, it will go away'. My last question is - has anyone else been told this to later find out that indeed your anemia was caused by celiac disease?

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Rachel, yeah, I hate that they charge so much. Ask them to fax the records to you locally though or to a doctor that you know will not charge and you may be able to get around it.

<{POST_SNAPBACK}>

I think if I understood correctly if I'm requesting the records for *myself* then I have to pay but if I want them sent to a new doctor I don't. I *think* thats what I was told. I'm going to switch plans this month and finally get out of my HMO...I'll wait till I switch and then try to get the records.

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I supposedly had a Celiac panel blood test done today and they only took one vial of blood. Anyone know if that's all it takes? I was so taken off guard when the hemotologist told me that based on my symptoms he really doesn't think I had celiac disease and by the way, my pcp promised all the paperwork was sent over and (oops!) they didn't send over many many things. Even the anti-body test info wasn't there!!! I was hoping today to find out what the heck test that was!!!! Now I have to call my pcp tomorrow and see if they can tell me.

Anyway, the new doc sheduled my biopsy (with GI he's affiliated with) and I'm cancelling the one with the other GI doc who said he'd biopsy me IF he saw something with the scope. At least the blood doc said you have to take many biopsies because only part of the lining could be damaged. And he said that you can't for sure see the damage. So I know he knows more than the only GI I've seen.

BUT - when I said 'I don't have cancer according to the GI so if I don't have celiac disease what else could be causing the anemia', guess what he said? 'Well you've been menstrating for many years (he knows I have very light cycles since he asked) and all that blood loss does cause some women to become anemic later in life. When you go through menopause, it will go away'. My last question is - has anyone else been told this to later find out that indeed your anemia was caused by celiac disease?

<{POST_SNAPBACK}>

Hopefully you are waiting for the celiac test results before you have the biopsy.

Yes there is an age related anemia - usually affects fairly old people.

If not celiac what could cause it? - any number of things. Some of the causes of anemia are external or internal bleeding, iron deficiency, anemia of chronic disease, kidney disease, pregnancy, poor nutrition, and alcoholism. Under poor nutrition you can think malabsorption - this can be caused by LGS - Leaky Gut Syndrome - which follows food sensitivies (not just gluten). Claire

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quote=Claire,Nov 8 2005, 07:49 PM]

Hopefully you are waiting for the celiac test results before you have the biopsy.

Yes there is an age related anemia - usually affects fairly old people.

If not celiac what could cause it? - any number of things. Some of the causes of anemia are external or internal bleeding, iron deficiency, anemia of chronic disease, kidney disease, pregnancy, poor nutrition, and alcoholism. Under poor nutrition you can think malabsorption - this can be caused by LGS - Leaky Gut Syndrome - which follows food sensitivies (not just gluten). Claire

<{POST_SNAPBACK}>

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Oh and I forgot to mention what else the hemo doc said today. Dr. - have you heard of the gluten free diet? Me - yes I know a lot about it. Dr. - then you know it's like everything you love to eat, well you can't ever have it again. I would never tell anyone to go on it until we do several concurring biopsies so we can see if there is damage and if it's getting worse. Me - (thinking, not saying) -I don't think that sounds too smart!

Maybe the biopsy would show if I have LGS and not celiac disease? I eat very healthy and my family thinks I'm a health nut even though I eat meat. I eat lots of fresh veggies and fruit and all dairy and gluten of course. So I'm not malnourished from a poor diet. I never had kids so I wonder if women who don't give birth have higher incidents of iron def. anemia. Also, I drink alcohol but one drink is my limit. If I really want to party I have two martinis. I'm more confused now than ever which was not my goal when I insisted on seeing a hemotologist.

<{POST_SNAPBACK}>

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quote=Claire,Nov 9 2005, 12:53 AM]

Have the doctors looked for any source of internal bleeding? That is always a route to follow when all other searches come up blank.

I am convinced that the more doctors we see the more confused we become. I have seen four neurologists in the past six months and was interviewed by a panel of 10 at NIH. Confusing. Claire

<{POST_SNAPBACK}>

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BUT - when I said 'I don't have cancer according to the GI so if I don't have celiac disease what else could be causing the anemia', guess what he said? 'Well you've been menstrating for many years (he knows I have very light cycles since he asked) and all that blood loss does cause some women to become anemic later in life. When you go through menopause, it will go away'. My last question is - has anyone else been told this to later find out that indeed your anemia was caused by celiac disease?

<{POST_SNAPBACK}>

When I was a teenager, I was diagnosed with severe anemia. After four kids, I was still anemic and told that they were the cause. Years ago, had some nail changes (clubbing, curving, color changes). The dermatologist ran a ferritin level and it came back 4 (I think she said normal is 20-100). She put me on feosol 2 x a day and rechecked. It came up to 7 and she increased it to 3 x a day. It came up to about 11 and dropped back to 4. At that point she recommended a hematologist.

The hematologist ran a lot of blood work and it came up microcytic anemia, macrocytic anemia, non-specific cold auto antibodies. She did xrays, physicals and increased the iron. At a follow up with a different hematologist, he looked me right in the eye and said "you're fat, female and over 40, get over it". Nice guy. By the way, I am 125 lbs, female and over 40 so he was close. He then said "you will continue to be anemic until menopause, just wait it out".

He wrote a letter to my PCP and said "she needs a hysterectomy as much as I do". He further wrote that I just needed to be patient for 10-15 more years until menopause and nature will take its course. A month later, I started bleeding profusely and it did not stop for six months. I was put on hormones and various other drugs to slow the bleeding but nothing worked. Eventually, had the hysterectomy and the levels got a little better. When the anemia returned, it was discovered that I had celiac which in turn was causing vitamin and mineral deficiencies (specifically Vit. K, Iron, Vit. D). So YES, you can have anemia directly related to celiac/gluten sensitivity/malabsorption problems. What do they tell men who don't have periods?

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What do they tell men who don't have periods?

<{POST_SNAPBACK}>

Oh my gosh kelliac! That is horrible - what a jack $%&!!! And your question is perfect. What do they tell anemic men??? I guess I was just so shocked that I felt like I shouldn't question this guy because he seemed like he know a lot more than my GI for which I was grateful. But he pushed and pushed asking all the details of my monthly cycle and I told him in no uncertain thems. I was on bc pills (for 19 years) until two months ago (after my anemia popped up) and I had only one heavy period in all that time. My cycles were on schedule and 3 days long - not painful or heavy. So I was just so floored when he said he was pretty sure I don't have celiac disease and that my anemia would go away after the change. What a jerk!

Thanks for sharing!

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Oh my gosh kelliac! That is horrible - what a jack $%&!!! And your question is perfect. What do they tell anemic men???

<{POST_SNAPBACK}>

Speaking of anemic men :) My red blood count has ranged 4.25-4.43 (Normal: 4.5-6.0) for many years. My doctors (several over the years) look at my results and almost unanimously say "Uhmm, that's a little low, but it's been that way a long time and it's not getting any worse; we better keep an eye on that." End of discussion.

My mother and older brother also had slight anemia for years but as they got older it got much worse. I know my Mother had at least one DQ1 gluten sensitivity gene type (since I have a pair of DQ1's) and it's possible my brother also has at least one; both continued to eat gluten, quite a bit in fact.

The doctors may be right, but I'm very interesting in seeing what my results are after 6 months gluten-free which will occur in Jan.

George

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Thanks for offering a male point of view George. Guess it doesn't matter what sex you are. If doctors can't explain something, they just act like everything is fine.

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