What is a normal high TTIgA score indicative of coeliac?

[Grace782617274]

Hi, 

I recently had a blood test where it was indicated that I might possibly have coeliac. I’ve been looking online, but I can’t see if the positive score I received is actually high enough to correlate with coeliac or if it might potentially be a false positive.

 

Tissue Transglutaminase IgA level: 95U/ml (normal range: 0-7U/ml)

 

I am being referred for a biopsy, but I was wondering if it comes back as a false positive will the doctors look at other possibilities that might have caused the high TTIgA or will they likely leave it? 
 

thanks for your help  

 

 

[trents]

Your question is a bit confusing but I assume the "false positive" you speak of refers to the serum antibody testing you have already had done. Your tTG-IGA is unequivocally high and the chances of it being caused by something besides celiac disease are not great. False positives in the blood work sometimes happen but with your numbers as high as they are it is unlikely. There are no false positives when it comes to the biopsy itself. But do not start a gluten-free diet until any and all testing is complete.

[Grace782617274]

14 minutes ago, trents said:

Your question is a bit confusing but I assume the "false positive" you speak of refers to the serum antibody testing you have already had done. Your tTG-IGA is unequivocally high and the chances of it being caused by something besides celiac disease are not great. False positives in the blood work sometimes happen but with your numbers as high as they are it is unlikely. There are no false positives when it comes to the biopsy itself. But do not start a gluten-free diet until any and all testing is complete.

Hi, thank you so much for replying. Sorry if the question was confusing.

I had blood test which came back positive at 95u/ml for TTG-IgA. I haven’t yet had the biopsy however I am concerned it may take several months.

I read online about people getting false positive TTG-IgA results and was feeling slightly stressed that would happen to me as I’m really suffering from symptoms currently and would like some answers of what’s causing it. I found it was confusing to find online what a typical positive TTG-IgA score for coeliac disease is and my doctor hasn’t really explained it to me.

[Scott Adams]

Your results look VERY high, not "normal high," so let us know how the biopsy goes. I will mention that in Europe you would likely be diagnosed with celiac disease on this result alone and not need to do a biopsy, as they now diagnose if your blood test results are 10x or higher than the level for celiac disease.

[trents]

By the way, welcome to the forum, Grace!

There is no typical positive tTG-IGA score since there are no industry standards for what are "normal" (i.e., negative) tTG-IGA scores. Each lab develops its own testing process and and so the reference ranges are always peculiar to the lab that analyzed the blood sample. The actual test score has relevance only with regard to what is the positive vs. negative range used by that lab. In your case, that is 0-7 U/ml. An equivocal value, i.e., one that was marginally positive would be maybe somewhere between 7 and 15. Yours is 95 and so not even close to equivocal.

Your spelling of "coeliac" indicates you are in the UK and I do know the health care system there is chaotic lately in the wake of COVID and other current economic factors. So, yes, follow-up endoscopies/biopsies to confirm celiac disease are typically not able to be scheduled for months after blood work is done.

There is the option of foregoing the endocopy/biopsy and just beginning the gluten-free diet to see if your symptoms improve. If you still want to go forward with he biopsy and it can't be done for some months you could start back on normal amounts of gluten (defined by the Mayo Clinic as two slices of wheat bread daily or the gluten equivalent) at least two weeks ahead of the procedure.

[trents]

14 minutes ago, Scott Adams said:

Your results look VERY high, not "normal high," so let us know how the biopsy goes. I will mention that in Europe you would likely be diagnosed with celiac disease on this result alone and not need to do a biopsy, as they now diagnose if your blood test results are 10x or higher than the level for celiac disease.

Someone from the UK has stated on the forum that more recently, the 10x higher level being sufficient for a celiac diagnosis without going through the biopsy was a temporary concession to the stress on the healthcare system caused by COVID and is beginning to be abandoned as things normalize.

[KathyF]

I am confused about my blood work and endoscopy results. I had positive EMA and high tTg Iga. My endoscopy showed hyperplastic gastroesophageal squamous mucosa with chronic inflammation including eosinophils. I don’t know if this is indicative of celiacs or just gluten sensitivity. Any thoughts?

 

 

[trents]

Welcome to the forum, KathyF.

All your blood work screams of celiac disease. A positive EMA just about guarantees you have celiac disease.

I assume they did a biopsy of the small bowel along with the endoscopy? Can you confirm this?

The description of the endoscopy findings addresses the condition of the esophagus rather than the small bowel lining. Celiac disease damages the villi that line the small bowel. It is also true that GERD (Gastroesophageal Reflux Disease) is very common in the celiac population as an associated condition and symptom.

Having said that, the words "hyperplastic"  "squamous" is of concern. There are pathological changes in the lining of your esophagus and signs of chronic irritation (inflammation and eosinophils).

Edited November 12, 2022 by trents

[KathyF]

The report says hyperplastic colonic mucosa. I think it’s important to add that I had my thyroid removed about 9 years ago due to Hashimoto disease. I have had chronic diarrhea since.

[trents]

There is a high correlation between celiac disease and Hashimoto's.

But let me seek some clarification here. In your previous post you stated you had hyperplastic esophageal mucosa. Do you also have hyperplastic mucosa of the colon?

You did not answer my question of whether or not they took a biopsy of the small bowel lining. Do you know if they did? That is the gold standard of celiac disease diagnosis.

Edited November 12, 2022 by trents

[KathyF]

I don’t know if they did do a biopsy of the small bowel lining, at least it’s not in my report. Yes I also have hyperplastic mucosa of the colon. I’m waiting on a referral to a gastroenterologist. My doctor who performed my colonoscopy was an internal med doc, don’t know if that makes a difference.

 

 

 

 

[trents]

Sounds like they did not do a biopsy of the SB. How frustrating! They should have done it when they did the endoscopy as it's also an upper GI procedure. Was the endoscopy done before or after the antibody testing for celiac disease?

[KathyF]

The Biopsy was done before. I was having severe gastric reflux. 

[trents]

Okay, that explains why they didn't biopsy the small bowel lining. You have a number of autoimmune disorders it seems. Fact is, they tend to cluster. Not unusual.

[KathyF]

I was kind of hoping you would say the biopsy didn’t confirm Celiacs,
sounds like I need more testing. Thanks for the advice and help, I appreciate it.

 

[trents]

From your antibody testing, I have no doubt that you have celiac disease. The EMA test is not particularly sensitive but it is very specific for celiac disease. If you want further confirmation, you would need another endoscopy with biopsy of the small bowel lining done.

If you do intend to get a SB biopsy done, you would need to continue eating regular amounts of gluten until the procedure was complete. Many people make the mistake of instituting a gluten free diet before testing is complete and in so doing, invalidate the testing.

On the other hand, you could decided to forego further testing begin a gluten-free diet to see if your symptoms improve. Celiac disease is an autoimmune disorder that causes inflammation in the small bowel lining in response to the consumption of gluten. Even small amounts of gluten keep the inflammation smoldering getting to a truly gluten-free state means committing to education as to where gluten is found in the food supply and strict adherence.

It also would not surprise me if your other autoimmune problems with the esophagus and colon revolve around what, for all intents and purposes, appears to be celiac disease.

[KathyF]

Thank you for the good advice, greatly appreciated.