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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.

I Need Help Interpreting Blood Test Results!
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Hi all. I am new to this forum but am really excited to glean your knowledge! My doctor recently sent me for blood tests for celiac (chronic diarrhea since childhood, fatigue, depression, iron-deficiency anemia) and he says the results are negative. I was wondering if I could get your opinions as to what these results actually mean before I decide what to do next. Here are my results (I'm in Canada, if that makes a difference...):

 

IgA 1.32 g/L  RefRange: (0.70-4.00)

 

Anti-transglutaminase IgA    <1.0  U/mL   

 

(<7.0 is negative, 7.0-10.0 is weak positive, >10.0 is positive)

 

So I believe the first number is the total serum IgA, right? I am not deficient according to this. And the next number is the tTG-IgA, right? Again, big fat zero, or close to. So I take it to mean that it is a pretty clear negative for celiac. Does that seem to fit with the knowledge of all you here? My doctor says the next testing we could do is colonoscopy but he says he's doubtful anything will show up. Any advice on steps I can take to gain some more health? I feel like the medical community has kind of written me off (my previous doctor gave me a diagnosis of IBS) since tests are negative... thanks for your input and opinions!

Erin

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welcome  :)

 

you should ask for a complete celiac panel which consists of:

 

DGP iga/igg

TTG iga (already done)

TTG igG

EMA

Total iga serum (already done)

 

you produce enough iga, so that makes the result valid.  i've seen it quite a few times on here that IBS really stands for "I Be Stumped"  :P

 

ask for the complete panel because some people have only been diagnosed with one or two of the above tests as positive.  Celiac is diagnosed through an endoscopy and not a colonoscopy. At least 6 samples should be taken during the endoscopy.  do not go gluten free until all testing is complete.

 

hope this helps!

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welcome  :)

 

you should ask for a complete celiac panel which consists of:

 

DGP iga/igg

TTG iga (already done)

TTG igG

EMA

Total iga serum (already done)

 

you produce enough iga, so that makes the result valid.  i've seen it quite a few times on here that IBS really stands for "I Be Stumped"  :P

 

ask for the complete panel because some people have only been diagnosed with one or two of the above tests as positive.  Celiac is diagnosed through an endoscopy and not a colonoscopy. At least 6 samples should be taken during the endoscopy.  do not go gluten free until all testing is complete.

 

hope this helps!

Thanks so much for your reply! Yeah, my doctor says that since I am clearly not celiac, a colonoscopy is the next test to figure out the cause of the chronic diarrhea. I will definitely ask for the complete panel you posted - I still have a feeling that gluten may be the issue and I'd rather run a few more blood tests before I get a (probably pointless) colonoscopy. I'm sure I'll be back after my results are in to get advice then as well. Thanks again for responding!

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So my doctor sent me for all the tests that were suggested here - wonderful that he was so willing to check it all out! There was a problem at the lab though when I went to get blood drawn. They said that the DGP tests didn't come up in the system so they couldn't run those. How important are these tests in diagnosing? Thanks so much!

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I have to use Labcorp for my insurance and a complete celiac panel for them consists of the tests I listed above.  On the other hand Quest Diagnostics says DGP are still considered experimental.   come to a consensus people  :)  what lab are you having them done through?  is labcorp an option for you?

 

check out page 12 of the report for specificity and sensitivity for DGP tests.  

 

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

 

others on the board say that DGP picks up early celiac.  my biopsy was negative, but my DGP igg was double the normal amount of antibodies, and since damage wasn't found on my biopsy, I've decided early celiac it is  :)

 

here are some other threads I've started that deal more with DGP:

http://www.celiac.com/gluten-free/topic/100245-other-known-causes-of-high-dgp-igg-besides-celiac/

http://www.celiac.com/gluten-free/topic/101686-chicago-celiac-center-response-regarding-dgp-and-ttg/

 

the chicago thread is contradictory...Chicago response, "if it was only gluten intolerance (now we call it "non-celiac gluten sensitivity") DGP shouldn't be present. We are not aware of any research showing that a high DGP score with a negative ttG may represent early-onset celiac. A negative TTG and a negative biopsy essentialy do rule out celiac. Why is DGP-IgG elevated then? I don't know: but no test is - if taken alone - 100% diagnostic of anything in medicine."

 

I stand by early celiac no matter what they say  :)

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Thanks so much for your reply! Yeah, my doctor says that since I am clearly not celiac, a colonoscopy is the next test to figure out the cause of the chronic diarrhea. I will definitely ask for the complete panel you posted - I still have a feeling that gluten may be the issue and I'd rather run a few more blood tests before I get a (probably pointless) colonoscopy. I'm sure I'll be back after my results are in to get advice then as well. Thanks again for responding!

 

If you do go for a colonoscopy, you might want to request an endoscopic biopsy be done at the same time. There are a few members around here whose enlightened doctors did an endoscope at the same time as an exploratory colonoscopy, and they were surprised by a positive endoscopic biopsy. Celiac blood work isn't always positive - I believe there is up to a 25% false negative testing rate.

 

Good luck!  :)

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If you do go for a colonoscopy, you might want to request an endoscopic biopsy be done at the same time. There are a few members around here whose enlightened doctors did an endoscope at the same time as an exploratory colonoscopy, and they were surprised by a positive endoscopic biopsy. Celiac blood work isn't always positive - I believe there is up to a 25% false negative testing rate.

 

Good luck!  :)

Thanks - that's good advice. If I'm going to go through the hassle of a colonoscopy I may as well have the endoscopy done too! Thankfully my doctor is usually willing to work with me on things so I'm sure he'd agree :)

 

I have to use Labcorp for my insurance and a complete celiac panel for them consists of the tests I listed above.  On the other hand Quest Diagnostics says DGP are still considered experimental.   come to a consensus people  :)  what lab are you having them done through?  is labcorp an option for you?

 

check out page 12 of the report for specificity and sensitivity for DGP tests.  

 

http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

 

others on the board say that DGP picks up early celiac.  my biopsy was negative, but my DGP igg was double the normal amount of antibodies, and since damage wasn't found on my biopsy, I've decided early celiac it is  :)

 

here are some other threads I've started that deal more with DGP:

http://www.celiac.com/gluten-free/topic/100245-other-known-causes-of-high-dgp-igg-besides-celiac/

http://www.celiac.com/gluten-free/topic/101686-chicago-celiac-center-response-regarding-dgp-and-ttg/

 

the chicago thread is contradictory...Chicago response, "if it was only gluten intolerance (now we call it "non-celiac gluten sensitivity") DGP shouldn't be present. We are not aware of any research showing that a high DGP score with a negative ttG may represent early-onset celiac. A negative TTG and a negative biopsy essentialy do rule out celiac. Why is DGP-IgG elevated then? I don't know: but no test is - if taken alone - 100% diagnostic of anything in medicine."

 

I stand by early celiac no matter what they say  :)

I'm actually in Alberta, Canada so Labcorp is not a possibility. I went in to the lab today (our lab is Dynalife) and they actually phoned the provincial lab to see if there was a different code for it or something and they did say the test was available... the woman who drew my blood said it came up as amidated as opposed to deamidated. I'm kind of thinking they didn't run the correct test but we'll see. At least they tried! Whatever my tests results are, I am going to go gluten free. If I feel better off gluten then I know I will need to stay off of it. I was just hoping that there would be a clear medical diagnosis because it would make it easier to explain to family. I think my kids have issues with gluten as well so it would be easier to have a positive result as opposed to the vague "gluten intolerance" diagnosis that makes people roll their eyes. But hey, I'll do what I have to do to keep my kids and myself happy whatever the case :). I appreciate the help!

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I'm in Alberta too.  My doctor (before i realized doctors aren't all experts on celiac disease - my bad) ordered the "celiac panel" and it was just the tTG IgA, total serum IgA, and EMA IgA; I think they only went ahead with the EMA because I ended up with a high tTG IgA... I am one of the "lucky" ones that had very clear cut lab results. Anyway, I don't think the labs up here are very up to date when it comes to celiac disease.

 

Good luck with the gluten-free diet (after your endoscopy) for you and your family. My kids all tested negative but a couple appear to have issues with gluten (symptoms resolved on a gluten-free diet) so we made the house gluten-free. It's a bit tricky when we are out and they want a treat, but I think making kids gluten-free (especially if they have noticable symptoms) is worth it in the long run.

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I'm in Alberta too.  My doctor (before i realized doctors aren't all experts on celiac disease - my bad) ordered the "celiac panel" and it was just the tTG IgA, total serum IgA, and EMA IgA; I think they only went ahead with the EMA because I ended up with a high tTG IgA... I am one of the "lucky" ones that had very clear cut lab results. Anyway, I don't think the labs up here are very up to date when it comes to celiac disease.

 

Good luck with the gluten-free diet (after your endoscopy) for you and your family. My kids all tested negative but a couple appear to have issues with gluten (symptoms resolved on a gluten-free diet) so we made the house gluten-free. It's a bit tricky when we are out and they want a treat, but I think making kids gluten-free (especially if they have noticable symptoms) is worth it in the long run.

Thanks nvsmom. Apparently the labs here aren't good either. They only had the tests you mentioned and they didn't even run the EMA since my tTG IgA was negative (my doctor saw the celiac panel list I brought in and agreed to send me for all the blood tests I could get). The paperwork says, "REQUEST CANCELLED. Not indicated. ATTG test has greater sensitivity for Celiac disease. If clinical suspicion is high, EMA may be approved." So I guess a doctor asking for a test to be run isn't reason enough for the lab to run the test... I have been unwell my entire life and this is what I continually come up against. I'm just ready to give up. I have a question about a test they ran - I think it's my total serum IgA and IgG - am I right? It says...

IgA 1.47 [0.70-4.00] g/L

IgG 8.64 [6.94-16.18] g/L

 

Anyway, thanks for listening to me rant. I appreciate the input :)

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Yes, that looks like total serum immunoglobulin A and G. Both look good if just a tad on the low side.

Did you have your kids tested? You said they appeared to have a gluten sensitivity too. You probably should get them tested to check (unless you are planning on making them strictly gluten-free regardless of any tests). Plus, if they are positive, then you can be pretty sure that you are a celiac even if you are serologically negative in the one tTG IgA test, and I believe 5-25% of celiacs are.

Good luck with the gluten-free diet! :)

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Yes, that looks like total serum immunoglobulin A and G. Both look good if just a tad on the low side.

Did you have your kids tested? You said they appeared to have a gluten sensitivity too. You probably should get them tested to check (unless you are planning on making them strictly gluten-free regardless of any tests). Plus, if they are positive, then you can be pretty sure that you are a celiac even if you are serologically negative in the one tTG IgA test, and I believe 5-25% of celiacs are.

Good luck with the gluten-free diet! :)

Thanks - do you think the fact that the IgG and IgA are on the low side is an issue? I have an appointment with my kids' paediatrician tomorrow. My oldest doesn't seem to have any symptoms of celiac (other than reflux) but my younger two have some things I'm concerned about. I'll see if he's willing to have them tested. We stopped our gluten-free diet (well, it was more a gluten-light diet) so the testing won't be off because of that. Hopefully we'll either get some answers or soon be done with testing so we can go gluten free anyway! Again, thanks for your post :)

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I am guessing (and this is only a guess) that your low/normal IgA and IgG would not affect the tests. It is possible for those with very normal IgA to get a negative on the tTG IgA. In fact, most celiacs do not test positive on all the tests, that is why they run so many - doctors won't admit that though.

 

Many who are negative on the tTG IgA are positive in the demaninated gliadin peptide tests (DGP's) but I honestly doubt it is available in Alberta. I have yet to hear of anyone getting it up here. It may be available but doctora might not realize that it is a good alternative to the tTG tests. It is actually thought to be a superior test for kids - you might want to ask the doctor about it's availability.

 

Here is a great report from the World Gastroenterology Organisation on their Celiac Practice Guidelines. It discusses the tests, how sensitive and specific to celiac they are on pages 11-12. It's a good one to show doctors if you need back-up. http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

Good luck.  :)

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