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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.

Very confused by test results
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11 posts in this topic

Hello! I could use some help interpreting a blood panel I recently had.  I have hashimoto's thyroiditis, and after I asked my Endo. About the increased risk of celiac in thyroid patients, she agreed to order the lab. 
 
 
I still have some questions that the Endocrinoligist didn't want to or couldn't answer. I was told that though it says "results support diagnosis of celiac" that it was too weak to warrant further texting. Obviously if I don't have it, I'll be thrilled! But after following up with research, I'm not sure I agree with the conclusion to just let it go. 
 
I have spent a while now researching and I understand what levels should be expected, but the lab results are presented in a seriously confusing way. I can't quite understand which parts are results and which parts are reference ranges. I also am not sure about which tests the endo. is referring to that would not warrant another test.
 
I pasted the results below (this is how they look, no tables...) I could desperately use some help interpreting. I can get a second opinion, but that is costly, and I don't want to do it if it's not necessary! Thank you!!
 
 
Comment:
Chart Name Results Flag Ref Range Units
Endomys. Titer 1:5 A
IGA 154 70-400 mg/dL
tTG IgA 8.1 H 0.0-7.0 U/mL
Note
Reference range:
< 7.0 U/mL = Negative
7.0 - 10.0 U/mL = Equivocal
> 10.0 U/mL = Positive
Celiacsero Interp See Note
Note
Interpretive Data:
Test Equivocal Positive
Gliadin IgA 7 -10 U/mL > 10 U/mL
Gliadin IgG 7 -10 U/mL > 10 U/mL
tTG IgA 7 -10 U/mL > 10 U/mL
EMA Titer = or > 1:5
Celiacsero Ind SEE BELOW
Note
RESULT INTERPRETATION:
Results support a diagnosis of Celiac disease.
TTG, IgA EMA,IgA AGA,IgA AGA,IgG Total IgA
-------- ------- ------- ------- ---------
Neg Pos Neg Neg N/A
Gliadin DP IgG 5.4 0.0-7.0 U/mL
Gliadin DP IgA 1.4 0.0-7.0 U/mL
A=Abnormal H=High
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I'm not a doc, but it looks like  Endomys. Titer is 1:5 A  and has a reference range where positive is >= 1:5, so the A means Abnormal .  It looks like TTG IGA is 8.1 H and has a reference range where 7-10 is Equivocal. The H would imply High based on the last line, but I don't know if Equivocal is a week positive or inconclusive. The others look negative. Perhaps send for results to a gastroenterologist for a second opinion.

 

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On 4/16/2017 at 2:29 AM, tessa25 said:

Perhaps send for results to a gastroenterologist for a second opinion.

Ditto. If they concur then I'd highly recommend trialling the gluten free diet to see what affect it has on your thyroid etc. 

What, if any, are your symptoms? 

 

 

 

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Thank you!

So unfortunately, my endo. moved away and I am in the process of finding a new doctor.  I had an appointment with my primary care yesterday. He sent me for the reflexive celiac panel to retest. The test had been taken six months ago, and he wanted to see if the numbers had changed any.  Hopefully, I should have some clarity soon.

My main symptoms are Hashimoto's thyroiditis and PCOS (polycystic ovarian syndrome).  Fortunately,  I have hashimoto's (which means my antibodies are attacking my thyroid) but I have thyroid hormones in a very healthy range.  I see these as possible symptoms (if I were to have celiac) because they are frequently associated.  I do not have classic gastrointestinal symptoms.  I regularly have loose stools, but not painful cramping etc., I didn't even think of those as abnormal until through a conversation with a friend, (obviously a very close friend) they said that they did not experience that and that was weird.  I do have migraines regularly. It seems like the challenge with celiac symptoms is that they can be subtle and they can also be attributed to other things. For example, I know what my migraine triggers are. None of them are a quick repsonse to eating gluten.  

I know that for testing you should be on a gluten containing diet.  I am considering trying a gluten free diet - like JMG suggested after testing is complete either way. It seems like I have at least some TTG antibodies and I would like to not cause further damage.  Because my thyroid is subclinical,  I don't think I'll be able to tell if that is helping for a long time, as I'll have to trial it for a while to see if it coincides with a change in my thyroid levels.  

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Just a warning since a different doctor ordered your new tests.  The ranges can be different in different labs.  If a different lab is used you may not be able to compare the numbers from the first test to the new one.

I hooe you get some answers!

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Thanks for all your help.

I got my new test results in. I'm surprised by how fast they came back.

It is a different lab (different insurance) and fortunately, it is easier to read, but unfortunately, the results still seem a bit off from a clear cut answer.  Gliadin DP Igg was elevated,  along with my EMA.  The tTG IgA was not elevated on this test, although it was equivocal last time but on a completely different scale since it was from a different lab.  

 

It seems odd that the tTG IgA is lower. Does anyone know anything about that?  At the same time, EMA and Gliadin DP IgG are higher.  

I appreciate everyone's input. Until now, I have only been seeing an endocrinologist and my primary care.  They both seem to be aware of celiac but not incredibly confident in navigating the diagnosis.  My endo shrugged off the first test results as not that high.  Obviously, I don't want to have celiac, but I wanted a second opinion.  I was glad that my primary care wanted to at least look at tests again. I'm not sure yet what the next steps will be.  

Celiac Serology Profile with Reflex to Endomysial Antibody (EMA), IgA Titer by IFA

  NAME VALUE REFERENCE RANGE
F Endomys. IgA Screen Positive  A Neg. at 1:5 ("")
F Endomys. IgA Titer 1:10  A Not Indicated (titer)
F IgA 161 70-400 (mg/dL)
F TTG IgA 10.7 0.0-14.9 (U/mL)
- Reference Range:
- 0.0-14.9 U/mL = Negative
- >=15.0 U/mL = Positive
F Interp Data See Note  ("")
- Test Negative Positive
- Gliadin IgA 0.0-14.9 >=15.0
- Gliadin IgG 0.0-14.9 >=15.0
- TTG IgA 0.0-14.9 >=15.0
- EMA Titer >= 1:5
F Interp Test: See Result Note:  ("")
- RESULT INTERPRETATION:
- Results support a diagnosis of Celiac disease.
- TTG, IgA EMA,IgA AGA,IgA AGA,IgG Total IgA
- -------- ------- ------- ------- ---------
- Neg Pos Neg Pos N/A
F Gliadin DP IgG 16.7  H 0.0-14.9 (U/mL)
- Reference Range:
- 0.0-14.9 U/mL = Negative
- >=15.0 U/mL = Positive
F Gliadin DP IgA 4.3 0.0-14.9 (U/mL)
- Reference Range:
- 0.0-14.9 U/mL = Negative
- >=15.0 U/mL = Positive
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Hello again :)  Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside. 

What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example. 

You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest. 

If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms.

Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 

internetdoctor-768x576.png

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13 hours ago, Jmg said:

internetdoctor-768x576.png

Great Image JMG.

 

Thanks for the feedback. I think I feel that the decision to push for further tests, and not shrug it off is the direction I want to go. And I think I may try the diet post-endoscopy, and see if I respond (particularly if my thyroid responds to the diet).  Thank you All!

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16 minutes ago, CaroCaroCaro said:

I think I feel that the decision to push for further tests, and not shrug it off is the direction I want to go.

Good for you! One suggestion, if you run into another reaction like your Endo, try and ask a question which puts the burden of proof on them, ie: 'Given the positive blood test, on what clinical basis are you excluding celiac?' At least it forces them to be more precise and perhaps exposes any flaws in their reasoning. Although if you reach that stage with a doctor it's probably worth looking for another...

On 4/21/2017 at 2:49 PM, CaroCaroCaro said:

So unfortunately, my endo. moved away and I am in the process of finding a new doctor.  I had an appointment with my primary care yesterday. He sent me for the reflexive celiac panel to retest.

If I were a cynic I'd say your Endo had already metaphorically left the building when they were analysing your tests.Your primary seems more on the ball though :)

Best of luck! If and when you go gluten free come back here and there will be plenty of support for you.

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3 hours ago, Jmg said:

Good for you! One suggestion, if you run into another reaction like your Endo, try and ask a question which puts the burden of proof on them, ie: 'Given the positive blood test, on what clinical basis are you excluding celiac?' At least it forces them to be more precise and perhaps exposes any flaws in their reasoning. Although if you reach that stage with a doctor it's probably worth looking for another...

If I were a cynic I'd say your Endo had already metaphorically left the building when they were analysing your tests.Your primary seems more on the ball though :)

Best of luck! If and when you go gluten free come back here and there will be plenty of support for you.

 That's a great question to ask. Thanks for arming me with good ones. I'm doing my research to be able to stand my ground. 

 

Ironically, my endo. Was the most helpful doctor I'd seen and my GP has generally not seemed to have a clue. I have PCOS and Hashimoto's thyroiditis, when I moved to the area and saw him, he was resistant to refer me to an endocrinologist (before I moved to the area, I'd already been seeing an endo. For three years for follow ups since I'd been diagnosed.) My endo. Was able to treat the thyroid antibodies well, they went down without synthroid or surgery (which previous doctor's had suggested).

However, I think she dropped the ball on the Celiac blood panel (which I think endos should Definitely be more aware of). And my GP seemed much more aware on this issue. I think the takeaway is always do your research, advocate for yourself, and let second opinions fill in the gaps in knowledge some on your care team may have. (But also, ditch them if they don't know what they're talking about)

Also, I live in an area with a doctor shortage... 

 

Thanks for the welcome to the community!

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Welcome, Caro!

As I told another poster (Gertrude) the other day, no other disease but Celiac Disease will cause a positive EMA.  Why is it that many docs don't seem to grasp this?  <_<

As for your tTg/IgA numbers falling a bit, thyroid disease will also affect that particular test.  So, if your thyroid function has improved since the first testing you had done, that could account for the lower tTg number.  I also have both Celiac and Hashi's so my advice comes from experience, not from a medical degree.  May I ask you how they treated your thyroid without thyroid hormone or surgery? I find it odd that someone would recommend surgery when that is what you do for Graves Disease or hyper thyroid, as it is often called.  You say that your thyroid function improved but with Hashi's, that usually does not happen without using thyroid hormone. If you are new to Hashi's thyroid disease, then the gluten free diet may help to the point where you do not need thyroid hormone.  Mine was too far gone from long undiagnosed Celiac so I am on hormone replacement for life.  Not a bad thing......I am glad they have good replacement hormone choices.  BTW...I do not take synthetic hormone like Synthroid.  I use natural thyroid hormone which contains both T3 and T4 hormone. Worked much better for me.

Lastly, both Hashi's thyroid disease and PCOS are often seen with undiagnosed Celiac.  Both are associated conditions so your other health issues are clues to the whole picture.  Good luck with the docs but from what I have read here, you sound like a bona fide Celiac to me!   ;)

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