Borderline Celiac Serology

[Gershon]

Hi, my daughter was diagnosed with Borderline Celiac Serology. Can someone explain what does it mean?

[trents]

6 hours ago, Gershon said:

Hi, my daughter was diagnosed with Borderline Celiac Serology. Can someone explain what does it mean?

What tests were run to diagnose her condition? Can you post the test results along with reference ranges indicating what is negative and what is positive with regard to the standards used by that lab. Different labs use different standards.

[Gershon]

Hi, the tests were:

Transglutaminase IgA -83.8 U2mL

 

[trents]

2 minutes ago, Gershon said:

Hi, the tests were:

Transglutaminase IgA -83.8 U2mL

 

But what is the reference range? The raw number does us no good unless we know what reference ranges the lab uses to determine negative/positive. I think I asked for that in the fist post.

Edited May 10, 2022 by trents

[RMJ]

8 hours ago, Gershon said:

Hi, my daughter was diagnosed with Borderline Celiac Serology. Can someone explain what does it mean?

Serology is results from a blood test.  Borderline probably means that her result was above the normal range, i.e. positive, but not way above. 

[trents]

It would be nice to know the actual numbers though. I know in the UK they don't grant you celiac status (without further testing) until your antibody levels are 10x normal, which I think is an excessively high bar for all practical purposes.

Edited May 10, 2022 by trents

[Russ H]

17 hours ago, trents said:

It would be nice to know the actual numbers though. I know in the UK they don't grant you celiac status (without further testing) until your antibody levels are 10x normal, which I think is an excessively high bar for all practical purposes.

The UK is slowly moving out of the Stone Age. The latest provisional guidelines, which were updated during the pandemic are here (prior to that, all adults had to undergo a biopsy):

https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease/

[Parent of celiac teen]

On 5/10/2022 at 1:00 AM, Gershon said:

Hi, my daughter was diagnosed with Borderline Celiac Serology. Can someone explain what does it mean?

 

4 hours ago, Russ314 said:

The UK is slowly moving out of the Stone Age. The latest provisional guidelines, which were updated during the pandemic are here (prior to that, all adults had to undergo a biopsy):

https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease/

It means her level of gluten antibodies are low. My teens number was four, which is considered low. Her doctor did an endoscopy with biopsy and it was discovered that she has Celiacs.  I would insist the doctor do the endoscopy  

(When a Celiac eats gluten their body has an autoimmune reaction and their body produces antibodies to fight off the gluten because their body sees gluten as something that needs to be "fought off".   The blood test measures for those antibodies.   It is the same thing when you come into contact with a virus and the body produces antibodies to fight off the virus)

[trents]

4 hours ago, Russ314 said:

The UK is slowly moving out of the Stone Age. The latest provisional guidelines, which were updated during the pandemic are here (prior to that, all adults had to undergo a biopsy):

https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease/

So what is the change? The chart indicates that adults 55 and over, with 10x or greater than normal levels of tTG-IGA, need to be referred to a GI doc for a gastroscopy before being given a celiac diagnosis. If anything, this seems to be a regression. Is there a change for younger people only, then?

[C4Celiac]

5 hours ago, Parent of celiac teen said:

My teens number was four, which is considered low.

was she actually having symptoms at #4?      0 - 3 is normal..

[Russ H]

5 hours ago, trents said:

So what is the change? The chart indicates that adults 55 and over, with 10x or greater than normal levels of tTG-IGA, need to be referred to a GI doc for a gastroscopy before being given a celiac diagnosis. If anything, this seems to be a regression. Is there a change for younger people only, then?

Originally the guidelines required an endoscopy for all adults, this was raised to those aged 55 and over. The purpose of the endoscopy in older people is to check for abnormalities such as neoplasms rather than diagnosis of coeliac per se.

[Parent of celiac teen]

13 minutes ago, C4Celiac said:

was she actually having symptoms at #4?      0 - 3 is normal..

 

13 minutes ago, C4Celiac said:

was she actually having symptoms at #4?      0 - 3 is normal..

She was having severe symptoms.    Joint pain in her knees, shoulders, ankles and feet bad enough to wake her up at night.  Insomnia. Headaches several times a week. Stomach bloating and pain so bad she did not leave the house without antacids and gas pills. Severe fatigue. Brain fog which made learning difficlut.  Rashes.  Dry mouth. She missed a lot of school and saw many doctors who told her it was growing pains. I finally took her to a rheumatologist because the joint pain was so severe and she figured it out and did the blood test for Celiacs. Her number was four which is considered a low positive. We then saw a  gastroenterologist who did the endoscopy with biopsy and gave her the definitive diagnosis. She had severe damage to  the villi in her small intestine in some places which leads to malabsorption which leads to malnutrition which leads to the symptoms she had.  We saw a dietician who said a lot of doctors would not have done the endoscopy with a low number like so we were lucky to have such an awesome doctor.  

[Russ H]

59 minutes ago, Parent of celiac teen said:

 

She was having severe symptoms.    Joint pain in her knees, shoulders, ankles and feet bad enough to wake her up at night.  Insomnia. Headaches several times a week. Stomach bloating and pain so bad she did not leave the house without antacids and gas pills. Severe fatigue. Brain fog which made learning difficlut.  Rashes.  Dry mouth. She missed a lot of school and saw many doctors who told her it was growing pains. I finally took her to a rheumatologist because the joint pain was so severe and she figured it out and did the blood test for Celiacs. Her number was four which is considered a low positive. We then saw a  gastroenterologist who did the endoscopy with biopsy and gave her the definitive diagnosis. She had severe damage to  the villi in her small intestine in some places which leads to malabsorption which leads to malnutrition which leads to the symptoms she had.  We saw a dietician who said a lot of doctors would not have done the endoscopy with a low number like so we were lucky to have such an awesome doctor.  

Well done for getting her diagnosed and sorted out. Many of the extra-gastrointestinal symptoms are caused by auto-antibodies, particularly regarding arthritis.

[Parent of celiac teen]

48 minutes ago, Russ314 said:

Well done for getting her diagnosed and sorted out. Many of the extra-gastrointestinal symptoms are caused by auto-antibodies, particularly regarding arthritis.

She thankfully does not have arthritis! Her joint pain has subsided.  The only symptom she has after 15 months gluten free is mild joint pain. Our house is 100% strict gluten free   Her antibodies were in the normal range after six months gluten free   We felt her health was too important to not make the whole house gluten-free 

[trents]

Good decision. It is nearly impossible to avoid getting "glutened" unless the whole household goes gluten free.