Diagnosis?

[Jan Meindfak]

Hey all! 

After dealing with GI problems for years, 4 months ago I decided to finally start doing something about it and find a cause. My TTG IGA came back positive (90 with <20 meaning positive), but EMA IGA and IGG negative, which has left me with solid dose of uncertainty. Genetic test showed HLA DQ 2.5 positive, but I'm still not convinced. Currently awaiting for biopsy results, but I'm also sceptical about it since doc took only one sample! 

Apart from intestinal sensations over last weeks I've started having terrible knees and back pain, making me feel like a 100 year old, and I'm in my early 20's. 

My question to you, experienced good people, is can it be something else than celiac, and TTG could've been just false positive, or is it just straight road down to celiac disease diagnosis from here?

Edited February 17, 2020 by Jan Meindfak
Typo

[GFinDC]

Hi Jan,

It only takes one positive antibody to cause celiac damage.  So having a negative on other types of antibodies doesn't mean anything.  So, if your endoscopy shows celiac type damage then you have celiac disease.

You may have celiac even if the endoscopy doesn't show it as the damage may not be advanced enough to detect right now. 

Edited February 17, 2020 by GFinDC

[Fenrir]

With a positive TTG IgA it's about a 98% chance you have a celiac disease but there is a 2% chance you could have a false positive caused by another autoimmune disease. That's why they do the biopsies, you don't want to have an incorrect DX of celiac disease when you may have another autoimmune disease that may require a different treatment.

[cyclinglady]

I only tested positive to the DGP IgA, yet had intestinal damage.  I never had a positive TTG IgA, TTG IgG or EMA even in many follow-up blood tests.   It is a shame that your GI took only one biopsy when the American GI Association and celiac research centers recommend several and in specific locations.  Did your GI tell you why he or she took only one?  

[Fenrir]

  On 2/17/2020 at 4:56 PM, cyclinglady said:

I only tested positive to the DGP IgA, yet had intestinal damage.  I never had a positive TTG IgA, TTG IgG or EMA even in many follow-up blood tests.   It is a shame that your GI took only one biopsy when the American GI Association and celiac research centers recommend several and in specific locations.  Did your GI tell you why he or she took only one?  

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Yeah, one sample isn't good. Should be at least four, but eight would be better. 

[Jan Meindfak]

  On 2/17/2020 at 4:56 PM, cyclinglady said:

I only tested positive to the DGP IgA, yet had intestinal damage.  I never had a positive TTG IgA, TTG IgG or EMA even in many follow-up blood tests.   It is a shame that your GI took only one biopsy when the American GI Association and celiac research centers recommend several and in specific locations.  Did your GI tell you why he or she took only one?  

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No, he didn't, and he told me that after, so I couldn't do anything about it. It wasn't the same guy who had ordered endoscopy unfortunately. But there's no way I'm doing it again!

So what do You suggest? Start a gluten-free diet and test for antibodies in 3 months? Because I get conflicting information, as dietician today said 90 with positive over or equal 20 isn't really a lot. But that genetic test seems to be a little more than coincidence, does it?

[cyclinglady]

About 30 to 35% of the population carries the genes that could, I repeat, could develop into celiac disease.  The genetic test just helps rule out celiac disease.  It can not diagnose it.  But with a very positive TTG and a positive genetic test, odds are you probably have celiac disease, but you should wait for your biopsy (pathologist’s report)  and consult with your doctor.  Get and maintain all your medical records.  It is your right.  

To answer your question, yes, you can go gluten free and re-test.  If your TTG is decreasing, you are probably on the right track.  Know that it can take a year for the TTG to normalize.   If your joint issues do not resolve (and that can take months to a year), know that you can have more than one autoimmune disorder or another concurrent illness.  But it is common for celiacs to have joint issues.  

[Jan Meindfak]

  On 2/17/2020 at 11:24 PM, cyclinglady said:

About 30 to 35% of the population carries the genes that could, I repeat, could develop into celiac disease.  The genetic test just helps rule out celiac disease.  It can not diagnose it.  But with a very positive TTG and a positive genetic test, odds are you probably have celiac disease, but you should wait for your biopsy (pathologist’s report)  and consult with your doctor.  Get and maintain all your medical records.  It is your right.  

To answer your question, yes, you can go gluten free and re-test.  If your TTG is decreasing, you are probably on the right track.  Know that it can take a year for the TTG to normalize.   If your joint issues do not resolve (and that can take months to a year), know that you can have more than one autoimmune disorder or another concurrent illness.  But it is common for celiacs to have joint issues.  

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Thank you. I'll do some extra tests to rule out any other possible disorders, and start a diet. I'll check back in when biopsy results come and I consult them with a doc (don't have too much trust to scrubs though anymore). 

[Jan Meindfak]

Yep, I've just come back from GI doc, and it's celiac. Tested for RF which came positive, so I'm seeing a rheumie tomorrow. 

Anyway, I've officially joined gluten free club