Very confused by test results

[CaroCaroCaro]

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

[tessa25]

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.

 

[Jmg]

  On 4/16/2017 at 1:29 AM, tessa25 said:

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

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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? 

 

 

 

[CaroCaroCaro]

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.  

[RMJ]

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!

[CaroCaroCaro]

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

[Jmg]

Hello again   Well first thing is the - Open Original Shared Link 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: 

[CaroCaroCaro]

  On 4/26/2017 at 7:26 AM, Jmg said:

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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!

[Jmg]

  On 4/26/2017 at 8:35 PM, 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.

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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 1:49 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.

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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.

[CaroCaroCaro]

  On 4/26/2017 at 8:55 PM, 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.

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 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!

[Gemini]

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!  

[CaroCaroCaro]

  On 4/27/2017 at 4:21 PM, Gemini said:

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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Thanks for the feedback!  Gemini you're very right - surgery was a totally weird recommendation.  My current doctor treated me without hormones because my TSH levels are normal. The doctor found that my Vitamin D levels were severely low and put me on a high dose. They climbed just out of the deficient range. I am very active and frequently outdoors,  and they still only climb out of deficient If i'm on intensive VIitamin D supplementation.  -  In addition, She also suggested I  a modified lower carb diet (I'm at a healthy weight, there was no reduction in calories, just an increase in protein and fat and a reduction in carbs,  a low reduction, slightly above the recommendations for a diabetic), which the doctor recommended for PCOS.  Both of these coincided correlated with a slight reduction in the anti-thyroid antibodies and a slight reduction in nodule size. My TSH levels have remained stable, so it was incorrect to say function, really just a reduction in the level of attack (but the thyroid levels are still high).  The doctor that recommended surgery did so because "you're about to start college and you won't have time for monitoring,  it will eventually fail. If we remove it now, you can just go on Synthroid and you'll never have to deal with the levels being out of whack."  Yeah.... I was 18 then.... I'm now 27, but my Mom just went "NOPE!" and got a second opinion.  This person was fine, but all he did was monitor to make sure the TSH levels stayed ok.  They did, I just have a goiter and several nodules.  The most recent endo. I've seen, who put me on intensive Vitamin D therapy and worked with me on the diet,  felt like she was thorough (again minus completely dismissing the first celiac results.

I think the D supplementation and diet were associated with a decrease (but obviously didn't and really couldn't reverse the outcome of the disease) in antibodies and nodule size because my TSH levels have yet to get out of whack. I also wonder if with fewer carbs, I ate less (thought still too much If I'm celiac) gluten, and  that could have been more a factor in the correlation.  Gemini- I'm glad that you have found a good treatment that keeps your levels where they need to be!  I also really appreciate the welcome.

Update:  I have a referral to a GI specialist! I don't want to have Celiac... I love to travel, and I'm very social. I live in the US but my family is from Uruguay, South America, so I carry this Latin Cultural thing about loving to share food and seeing it as such a huge part of hospitality and community.  I know that food in social settings gets hard to navigate...But I feel a sense of relief to think that I might have an answer to other health questions and that there is a way that I can stop or at least slow damage. 

 

[cyclinglady]

Hey, I had Hashi's some 15 years prior to my celiac disease diagnosis.  My doc put me on a very lose dose of Armour.  It did bring down my antibodies (by half), but they were extremely high to begin with  (anything over 30 was positive and mine initially were close to 4,000).  My nodules and enlargement stayed constant.  Both actually went away since I have been gluten free!  Like Gemini, I am on Armour for life!  But that's okay.  Just had my TPO checked yesterday, in fact, and now the number is 360.  So, better, but that lab range is anything over 15 is positive.  No reappearance of the nodules or enlargement.  

I am also on a low carb high fat diet to treat my diabetes too.  

[Gemini]

Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel?

Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.

 I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is!

Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!