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Newly Diagnosed, Now Being Told It Is Not Celiac. Help Me Understand!

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New here, diagnosed a few weeks ago with positive blood test. Have had symptoms since 2007 and my mom has celiac. Had negative blood test in 2008 and negative biopsies in 2010. Symptoms worsened lately, mainly nighttime diarrhea but then happening more often. Also sometimes vomiting and low blood pressure and hives. All allergy testing was negative. But then celiac test was positive.

Gastro diagnosed me then and scheduled biopsies on dec 17. I had about three gluten-free days around dec 5 but eating gluten otherwise. She warned me celiac damage can be patchy. And I think she only did two biopsies. They were negative.

So I sent a followup question asking if that changed the diagnosis because I know people who have been told that. A different dr I have never seen answered for her since she is out. He said I do NOT have it as positive biopsy is required and only celiacs who haven't been eating gluten can have false negative biopsies. No word on possible latent celiac or patchy damage or possible reasons why diarrhea has disappeared after going gluten-free. I used to have it at least once daily.

The other dr had said in the test results that it can be missed on biopsy.

My blood work was for celiac comp transglutaminase ab (iga) and the result was 7 (normal listed as less than 4). It said serological evidence of celiac and the dr said the test is pretty good.

So I guess I need to go back to see the original dr with my questions. Based on what people here know, do I have it? Symptoms went away after over six years. Isn't requiring positive biopsy old school? How important is an actual diagnosis? I'm a bit irritated that this guy I've never even seen in person is off handedly just saying there's no way you have it and giving me no guidance or answers. This was sent to me using my clinic's electronic system.

Thank you much for helping me understand intricacies of diagnosis!

Karla

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Welcome Karla!

 

The doctor that answered your question does not seem to have enough training/experience in Celiac Disease to have answered your question and is wrong.  While positive biopsy was thought to be the "gold standard" it is not conclusive.

 

With familial history, positive tTG-IgA and symptom improvement on a gluten-free diet would indicate Celiac Disease.

 

I'm not certain that the doctor that diagnosed you has up to date training/experience either.  Once you had the positive tTG-IgA did she order the complete Celiac Antibody Panel or nutrient testing?  She was right that damage can be spotty - so your negative biopsy results do not rule out Celiac.  If you don't have them yet request written or electronic copies of both the pathology and procedural report from the endoscopy.

 

When you said you improved gluten-free -- are you currently gluten-free?

 

I highly suggest getting back with the doctor that diagnosed you and request a complete celiac panel and nutrient testing.  Celiac prevents absorption of many nutrients that may need to be supplemented while you are healing.  

 

If you are currently gluten-free, you could request genetic testing as the antibody panel is not accurate once gluten has been removed.  Since your Mom has Celiac this may not be necessary, but could add another piece to your diagnostic puzzle.

 

Hang in there -- it can be a very frustrating process!

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If you were fine in 2010 but your blood tests recently came back positive maybe you caught the onset early enough that you don't have all the villous atrophy that others do.  That is a good thing.  If your mom has it and your blood test is positive, I think it is safe to say you have celiac disease.  

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Villi damage can be missed, I'm guessing that is what happened in your case.  Your tTG IgA was almost double the upper normal limit... that is pretty significant! When tTG IgA is present, it means your body is attempting to do damage to the mucosal linings of your intestines; perhaps your body was unsuccessful or you are healing quickly?

 

This report discusses celiac disease tests more on pages 10-12: 

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

As you can see on the chart on page 12, the specificity of the tTG IgA for celiac disease is 91-99%; that means that 91-99% of the time a positive test occurs, it will indicate celiac disease. When it is positive for something else, the results are always a weak positive.  I have never seen a strong positive that was not caused by celiac disease. The other causes of a weak positive are thyroiditis, chronic liver disease, serious infections, diabetes, crohn's and colitis... that's it.If your doctor continues to insist it is not celiac disease, then ask him which one is it?

 

Further proof would be to retest your tTG tests after eating gluten-free 6 and 12 months; if the results have come down, then that confirms the first test.

 

Best wishes and welcome to the board.  :)

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I would wait to speak with the GI doc who's been treating you all along.

Both my GI and Endo diagnosed me with celiac disease based on my positive labs, low Vitamin D and family history (and probably all of the other AI issues I have). I had an endoscopy/biopsy but was told it was not for the purposes of confirming the diagnosis. It was to check to see how much damage there was. When I asked about requiring a positive biopsy result, my GI doc responded "We know better now". 

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I've now spoken to my internist and also had a followup reply from the original gastroenterologist.  They both said with the positive blood test, family history, and good response to gluten-free diet, they feel comfortable saying it's probably celiac.  I believe my insurance will pay for genetic testing with a positive blood test and inconclusive biopsy results, so I think I will pursue that (my internist also brought it up). 

 

The gastro said she took four samples (even though she admitted the recommendation is 6-8) and the results may show only two samples because sometimes they get squished together on the tool which sort of shish-ka-bobs them together.  She also repeated that the damage can be patchy and sometimes missed with biopsy. 

 

Thanks for the input!  This board is great!

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Congrats on getting your diagnosis!  Don't get me wrong, I'm not wishing it on you but having an official diagnosis for something you're dealing with is very helpful.  I am really happy for you that they didn't leave you hanging in doubt.

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