Indeterminate transglutaminase iga

[Kipman]

Hi there😊,

I've had the celiac serology bloods done 3 times. Everytime the Iga is low but the transglutaminase iga is 'indeterminate'. Has anyone else had this? And does anyone know why it's happening? Google is confusing.

Thank you!

[trents]

Welcome to the forum, @Kipman!

When you say your Iga is low I assume you are referring to total IGA. Can you confirm this? If so, the antibody test score for the transglutaminase iga (what we generally refer to as tTG-IGA) test score cannot be trusted. Low total IGA (i.e., being "IGA deficient) will drive down the scores in the tTG-IGA test and can cause false negatives. Ask your physician to run a more complete celiac antibody panel which would include the DGP-IGA test as well as the DGP-IGG and TTG-IGG tests as well as the total IGA and the tTG-IGA.

You must not be engaging in the gluten free diet until all testing is completed, both the serum antibody testing and the endoscopy/biopsy, if the phyiscian should refer you for a GI doc consult who may want to do that procedure. Being on a gluten free diet or a reduced gluten diet will sabotage any testing.

Here is an article presenting an overview of the various tests that can be run when checking for celiac disease:

From the above article: 

IgA Levels/Deficiency Blood Test

This should always be included in any blood panel for celiac disease, but it does not test directly for celiac disease, and is done to determine the accuracy of the other blood tests. People who are IgA deficient may score lower, of have no measurable levels on certain celiac disease blood tests. This test measures the levels of Immunoglobulin A (IgA) in the bloodstream. IgA is an important antibody that plays a significant role in the immune system, particularly in protecting the body's mucosal surfaces (e.g., respiratory and digestive tracts). Low IgA levels can indicate IgA deficiency, a condition where the body does not produce enough IgA, leading to an increased risk of infections and other health issues. The IgA Levels/Deficiency Test helps healthcare providers diagnose and monitor IgA-related conditions.

Other Names for the IgA Levels/Deficiency Test:

Immunoglobulin A (IgA) Test

Total IgA Test

Serum IgA Test

IgA Serum Levels Test

IgA Blood Test

IgA Quantitative Test

IgA Antibody Test

IgA Immunodeficiency Test

[Kipman]

Thank you.

Yes I was referring to total iga - it came back as <0.15

I've also had the deamidated gliadin peptide IgA and IgG both of which were indeterminate on 2 tests. Third test the IgG was <1.

I'm having the biopsy in two days. Pretty much anything I eat apart from vegetables makes me quite sick now.

[trents]

So, it sounds like you may have already been avoiding gluten before the blood draw was done for the antibody testing. Is this correct?

[Kipman]

I did for a week, though that was 4 weeks before I had the test done.

The doctor told me the lab rang her and said they hadn't seen results like it in their lab. Them being nearly all indeterminate that is.

I also tested positive for a multiple connective tissue disease but when they did further testing it was all indeterminate too (I've only just realised that celuac is a connective tissue disease)

[trents]

I've never heard it said that celiac disease is a connective tissue disease. It is an autoimmune disorder that (classically) attacks the lining of the small bowel but we now know it can manifest in other body systems. It is also true that autoimmune disorders tend to cluster. That is, when you have one you often develop others.

[knitty kitty]

@Kipman,

Ask for a genetic test to determine if you have any of the known genes for Celiac Disease.  

Anemia, Thiamine deficiency and diabetes can each cause false negatives and low IgA.  You may want to investigate these further with your doctor.

Celiac Disease can occur with Ehlers-Danlos Syndrome, another genetic autoimmune disease.  Ehlers-Danlos is a connective tissue disease frequently seen in people who are double jointed or have stretchy skin.  This stretchy-ness can affect the digestive system.  

https://pubmed.ncbi.nlm.nih.gov/27321543/

[Kipman]

@knitty kitty

Hi there,

All my other bloods were within normal limits, though my iron has always been just a couple from being below range. Physio thought I had Ehlers-danlos syndrome, she sent a letter to my doctor but doctor said i don't have it.

I've only had stomach issues for 1.5 years. About 4 years ago I lost a tonne of weight (I did go through a really traumatic experience at that time which I got c-ptsd from) then 2.5 years ago I put all the weight back on plus 14kg and all within 6 weeks. I went up 3 clothing sizes. Bloat up like I'm  months pregnant. Pins and needles, aching joints and muscles, major forgetfulness and brain fog. Only get about 5 hrs sleep, urinate every hour day or night. Nausea and bad belly pain and rashes. No diarrhea though. It all just seemed to come out of no where.

It's crazy and I'm getting no answers. Biopsy getting done it 2 days.

[knitty kitty]

Nutritional deficiencies caused by undiagnosed, untreated Celiac Disease can cause symptoms like you describe.  Malabsorption of nutrients is caused by damage to the intestinal lining which makes absorbing essential nutrients difficult.  We need to absorb sufficient vitamins and minerals from our diet everyday to make sure our body functions properly.

Different vitamins and minerals can be stored for different amounts of time, but usually one of the first to become insufficient is Thiamin Vitamin B 1.  

Every cell in our bodies uses Thiamin as an energy source to do cell functions, especially the brain.  Our brain just sitting and thinking uses as much thiamine as muscles do running a marathon.  

Emotional trauma and physical trauma can each precipitate thiamine deficiency disorders.  

Thiamine deficiency disorders can manifest as sudden weight loss (without trying to lose weight),  OR sudden weight gain.  Pins and needles (paresthesia, neuropathy), muscle aches and cramps, forgetfulness and brain fog, insomnia, frequent urination, constipation and/or diarrhea, and abdominal pain are all symptoms of deficiencies in Thiamine and other B vitamins.   Gastrointestinal BeriBeri  is caused by Thiamin deficiency with the symptoms of nausea and abdominal pain.  

Doctors are not well educated in nutritional deficiencies, so deficiency symptoms are often brushed aside and ignored or attributed to other things.  

Blood tests are not accurate measures of thiamine or other B vitamin deficiencies.  The best way to determine a thiamine deficiency is to take thiamine and look for improvement of symptoms. Symptoms should improve within hours or days.  Doctors can administer thiamine intravenously for faster results, but over-the-counter Benfothiamine (an active form of thiamine) works just as well.  Thiamine is not harmful to be administered because thiamin is water soluble, meaning excess is easily excreted by the kidneys.  Thiamine is nontoxic even in high doses. 

Thiamine helps with PTSD and C-PTSD.  PTSD happens after one traumatic event or series of events.  C-PTSD happens after being chronically traumatized, day after day, frequently starting in childhood.  An example of Chronic PTSD would be a child being told their stomach aches were faked to get out of going to school because the child was really just lazy, when in reality the child has undiagnosed active Celiac Disease and diverticulitis.  My blog on this site has more information on my journey and thiamine deficiency.

Do talk to your doctor and nutritionist about correcting nutritional deficiencies that accrue in Celiac Disease.  Ask about Gastrointestinal BeriBeri.