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Blood results

Heatherisle
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Heatherisle Rookie
Heatherisle
Posted

Hi 

New to this so bear with me!!! My daughter was told a few years ago she probably had IBS but been feeling generally worse lately Recent IgA TTG Ab blood test indicative of coeliac at 19 U/ml but Endomysial IgA Abs negative. Awaiting appointment for biopsy , so was wondering if anyone else has had these differing results. Thank you

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trents Grand Master
trents
Posted
(edited)

Welcome to the forum, @Heatherisle!

Yes, not uncommon for multiple celiac antibody tests to not agree. The Endomysial IGA was the first antibody test developed to detect celiac disease. It is expensive to run and has largely been replaced by the tTG-IGA. But some physicians, particularly those who have been in practice for awhile, still order the EMA. It's a good test. Was there a "total IGA" test run to check for IGA deficiency?

 

Edited by trents
Heatherisle Rookie
Heatherisle
Posted
  • Author

Hi

Thanks for answering so quickly. Not sure about any other blood tests, all I have is a copy of what my daughter sent to me. Hopefully she’ll get the biopsy soon cos she’s really anxious about the whole thing, but she tends to have a lot of anxiety anyway and has done for a long time

RMJ Mentor
RMJ
Posted

Be sure to have her continue eating gluten before the biopsy. Reducing gluten now could lead to healing and false negative results.

Heatherisle Rookie
Heatherisle
Posted
  • Author

She’s eating mostly gluten as far as I know. Think her GP is trying to get her seen fairly quickly

Russ H Community Regular
Russ H
Posted
15 hours ago, Heatherisle said:

Hi 

New to this so bear with me!!! My daughter was told a few years ago she probably had IBS but been feeling generally worse lately Recent IgA TTG Ab blood test indicative of coeliac at 19 U/ml but Endomysial IgA Abs negative. Awaiting appointment for biopsy , so was wondering if anyone else has had these differing results. Thank you

Do you know what the lab's standard range is for the IgA tTG2 result? The Endomysial IgA basically tests for the same antibodies as IgA tTG2 but it uses an older, less sensitive method and the result is positive/negative rather than quantitative. Hence, it is possible to show raised IgA tTG2 antibodies without getting a positive test for Endomysial IgA antibodies.

Heatherisle Rookie
Heatherisle
Posted
  • Author

Her result for the TTG Ab (IgA) was 19. Lab range 0.0 - 0.7. U/ml. 

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Russ H Community Regular
Russ H
Posted
On 8/21/2025 at 11:40 AM, Heatherisle said:

Her result for the TTG Ab (IgA) was 19. Lab range 0.0 - 0.7. U/ml. 

That is more than 10x the standard range, so a strong positive. In the UK for children and adults under the age of 55, at least 10x the standard range is sufficient to be diagnosed without having an endoscopy. The NICE guidelines are are different for children in that a referral to a gastroenterologist is also recommended for diagnosis.

https://www.coeliac.org.uk/healthcare-professionals/diagnosis/how-to-test/

https://www.coeliac.org.uk/healthcare-professionals/diagnosis/diagnosis-in-children/

 

Heatherisle Rookie
Heatherisle
Posted
  • Author

Thanks for your reply. She has been given a date for her endoscopy, 28th of this month, so hopefully she’ll know for sure if she definitely has coeliac. Needless to say she’s dreading it!!!!

Wheatwacked Veteran
Wheatwacked
Posted

Here is an article that explains test results and what they mean.  Testing for Celiac Disease is so elusive, any positive, unless a lab error false positive, is evident of Celiac.  It is easier to be in denial, tnan committing to gluten free.  Like not believing a pregnancy test.  Denial will lead to more suffering.

Are You Confused About Your Celiac Disease Lab Results?

Heatherisle Rookie
Heatherisle
Posted
  • Author

Thanks everyone for replying. Actually made a mistake when stating the lab range for results, should have been 0.0-7.0 not 0.7 u/ml. She was 19 u/ml. I’m afraid science bamboozles me especially trying to understand all the IgA’s and other bits!!!!Regular blood results like full blood count etc not so much!!!!

  • Solution
trents Grand Master
trents
Posted
  • Solution

Thanks for the follow-up correction. Yes, so not 10x normal and the biopsy is therefore totally appropriate to rule out a false positive or the unlikely but still possible situation of the elevated lab test number being caused by something besides celiac disease. 

Heatherisle Rookie
Heatherisle
Posted
  • Author

Thanks for replying. Hopefully biopsy will help clarify things. She’s keeping up with her gluten intake and last message from her said she’s paying the price for it!!!!

Heatherisle Rookie
Heatherisle
Posted
  • Author
On 8/24/2025 at 2:18 PM, Heatherisle said:

Thanks for replying. Hopefully biopsy will help clarify things. She’s keeping up with her gluten intake and last message from her said she’s paying the price for it!!!!

Hi 
My daughter has had her endoscopy and biopsies done but still none the wiser as to whether it’s coeliac even though she has many of the signs and symptoms. Gastroenterologist not 100% convinced as herEMAb blood test was negative even though her TTG Ab19 was positive at 19, lab range was 0.0-7.0. Bulb D1 biopsy potentially looked a little flat/strophic, D2 relatively unremarkable. Also found some oesophagitis and mild gastritis, biopsy taken from there. She has also to hand take another stool sample for faecal Calprotectin which I’ve never heard of!! Als advised to trial a gluten free diet. Just wondering if anyone has had similar results. Thanks so much

Heatherisle Rookie
Heatherisle
Posted
  • Author
18 minutes ago, Heatherisle said:

Hi 
My daughter has had her endoscopy and biopsies done but still none the wiser as to whether it’s coeliac even though she has many of the signs and symptoms. Gastroenterologist not 100% convinced as herEMAb blood test was negative even though her TTG Ab19 was positive at 19, lab range was 0.0-7.0. Bulb D1 biopsy potentially looked a little flat/strophic, D2 relatively unremarkable. Also found some oesophagitis and mild gastritis, biopsy taken from there. She has also to hand take another stool sample for faecal Calprotectin which I’ve never heard of!! Als advised to trial a gluten free diet. Just wondering if anyone has had similar results. Thanks so much

Sorry, typing error, not strophic, should read strophic!!!!

Just now, Heatherisle said:

Sorry, typing error, not strophic, should read strophic!!!!

Did it again, atrophic, not strophic, (flippin technology)

trents Grand Master
trents
Posted

Well, you've done both stages of testing now, the blood testing and the scope/biopsy so there is no reason to postpone trialing a gluten-free diet. And, yes, we get many reports on this forum from people with similar diagnostic experiences that leave them without desired clarity. My take would be your daughter is in the early stages of developing active celiac disease, perhaps transitioning from NCGS (Non Celiac Gluten Sensitivity) to celiac.

Heatherisle Rookie
Heatherisle
Posted
  • Author

Aw thank you so much for replying so quickly. Just wish the endoscopy had been clearer but as you say she might be in the early stages although she’s had gastric intestinal symptoms for a few years now but was told it was IBS. She won’t get the results for about 12 weeks which is frustrating, so hopefully if she trials a gluten free diet things will hopefully improve even if only slightly. I know improvements aren’t likely to happen immediately

Heatherisle Rookie
Heatherisle
Posted
  • Author
2 hours ago, trents said:

Well, you've done both stages of testing now, the blood testing and the scope/biopsy so there is no reason to postpone trialing a gluten-free diet. And, yes, we get many reports on this forum from people with similar diagnostic experiences that leave them without desired clarity. My take would be your daughter is in the early stages of developing active celiac disease, perhaps transitioning from NCGS (Non Celiac Gluten Sensitivity) to celiac.

So even though she was initially diagnosed with IBS, could that have been wrong and she has had coeliac all along even though the endoscopy only showed potential flattening and atrophy inD1. Plus one positive and one negative blood result.It’s so confusing for my old brain!!!!

RMJ Mentor
RMJ
Posted

When you say the endoscopy showed potential flattening and atrophic villi, Is that the visual result and you’re still waiting for the pathology report on the biopsies?

It is quite possible to have the endoscopy look ok and the biopsies show celiac damage. That happened at my last endoscopy. It is also quite possible to only have damage in some areas. Hopefully her doctor took biopsies from the areas with potential flattening and atrophy. 

Heatherisle Rookie
Heatherisle
Posted
  • Author
53 minutes ago, RMJ said:

When you say the endoscopy showed potential flattening and atrophic villi, Is that the visual result and you’re still waiting for the pathology report on the biopsies?

It is quite possible to have the endoscopy look ok and the biopsies show celiac damage. That happened at my last endoscopy. It is also quite possible to only have damage in some areas. Hopefully her doctor took biopsies from the areas with potential flattening and atrophy. 

That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me

knitty kitty Grand Master
knitty kitty
Posted

Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.  

Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  

trents Grand Master
trents
Posted
4 hours ago, Heatherisle said:

So even though she was initially diagnosed with IBS, could that have been wrong and she has had coeliac all along even though the endoscopy only showed potential flattening and atrophy inD1. Plus one positive and one negative blood result.It’s so confusing for my old brain!!!!

Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.

Heatherisle Rookie
Heatherisle
Posted
  • Author
On 8/28/2025 at 11:59 PM, trents said:

Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.

I have heard of NCGS, but everything is just so confusing!!! Just unsure of things as her EMA test was negative but TTG was positive @19u/ml(lab range 0.0-7.0).Apparently she also has occasional bubble like blisters in between her fingers, don’t know if that’s significant. She is triallling gluten free as suggested by the gastroenterologist after her endoscopy. Keep getting different answers when typing in her symptoms etc. Some sites say it can be possible to have coeliac, even with a negative EMA . It’s so frustrating and her anxiety levels are through the roof. I know she’s hoping it’s coeliac which is weird I know!!! But if it’s not it just means more tests. Sorry to ramble on!!!

trents Grand Master
trents
Posted

Understood. It's very anxiety-provoking when you don't know what you are dealing with and don't know if you are attacking it correctly.

Heatherisle Rookie
Heatherisle
Posted
  • Author

Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight

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