Help understanding results

[maverickuk]

Just been to my consultation with my GP and have been referred. 

My results are as follows:

Tissu transglutaminase lGA level: 130 u/ml. Range 0.00 - 2.9u/ml

Endomysial antibody lGA level. Weak positive. No figures for that? Is that a visual test perhaps? 

Any assistance in understanding the figures would be great.

[cyclinglady]

Just as the nurse hinted.....you have celiac disease!  Normally, biopsies (obtained from through an endoscopy) would officially confirm it, but you will have to decide if you want to go that route.  Easy for me as it was covered by insurance and I did not have to wait long.  Not so easy in countries where there often is a long wait.  I also just had anemia so I was not suffering at all even though I had moderate to severe intestinal damage.  I needed a firm diagnosis for that reason.  Also my husband (not officially diagnosed) had been gluten free for 12 years and I could not believe that I would have it too!   I encourage you to research further and decide what is best for you.  

[nvsmom]

The tTG IgA typically indicaes and autoimmune attack is happening in the mucosal lining of the intestines.  You are over 40X the upper limit.  That's about as positive as it gets.

The EMA IgA is similar to the ttG IgA but it tends to show more advanced disease.  It is not uncommon to have a positive tTG IgA and a negative EMA IgA, but it is very unusual to have a positive EMA IgA without a positive tTG IgA.  The EMA IgA often starts in response to the tTG IgA damaging the intestines. It attacks and tries to wipe out the upper layer of the intestines.

The EMA IgA is done as a titre.  They keep diluting the sample until it is undetectable.  A positive is often 1:80 or 1:160 (1:320 is very positive). 1:40, 1:20, 1:10 are considered negative usually (1:40 could be a positive in some places).  So yes, it is a visual test.

Those are the positives I had too.

[maverickuk]

Cyclinglady, thanks. My GP suggested getting the gastro privately as it will speed things up a lot, then the biopsy on the NHS. 

NVSMOM, yet again you're a fountain of knowledge, helping alleviate my concerns. Now I've had the positive blood, I'm worried I'll have a negative biopsy, but your post has helped me believe that maybe I will get a positive diagnosis, thanks. 

[cyclinglady]

Ha!  I was just going to tell you to google the content of your question, but NVSMOM actually keeps this information in her head!  Amazing!  ?

[nvsmom]

LOL  I'm at a good level of geekiness in those tests because they were relevant to my situation. Self serving interest.  

There is a chance you'll have a negative biopsy.  Damage can be patchy, although a positive EMA IgA is usually a positive biopsy.

The false negative rate for biopsies can be as high as 1 in 5, or 20%.  That seems to happen most early in the disease, if the damage is patchy, and if fewer than 6 samples were taken.  If you do get it done, make sure they start at 6 samples - more is better.

 

[maverickuk]

I am going to push hard for 6+ samples. As I cannot imagine how bad I'll feel getting a negative result. I need some answers and a chance of a life without exhaustion. 

Since my last post, I've had a few upsetting realisations. My mum has had a life of symptoms much the same as mine, but hers have progressed to osteoporosis, carpal tunnel, etc. 

We were chatting about it all and my mum talked about her IBS, I told her she doesn't have IBS, she has Celiacs and that the IBS was a misdiagnosis. She said "well your nan had IBS too", at which point suddenly dots connected in my mind and a cold shiver went through my body. My nan died of intestinal cancer. 

So it looks highly likely my nan lives with Celiac, undiagnosed, as did my mum and as have I. My mums health has declined rapidly but she's agreed to go completely gluten free for the rest of her life. Realising my nan probably died of it, plus her symptoms and my recent bloods, she's 99% convinced that she has it. 

She isn't going to have the tests, as she will not have an endoscopy. Long story short, my grandad had one, which punctured his oesophagus, leading to him being given morphine, which lead to pneumonia and he died. So I understand why she's terrified. 

Plus, it will be several more months of declining health. So nothing to lose by going gluten free. I am hoping this changes things for her.

i have a gastro appointment on November 3rd and hoping a biopsy not long after! Fingers crossed. 

[squirmingitch]

No reason for your rmum to go through an endoscopy then. She could still get the blood work but if she's content to go strict gluten-free then good for her. Make sure she reads or you teach her everything in the Newbie 101 so she knows how to protect herself from cross contamination. And tell her she might go through gluten withdrawal but it will only last 1 month max. if that (for most people). All your first degree relatives should get tested every 2 years or sooner if symptoms present as celiac can present at any age.

Fingers crossed for you to get an endoscopy very soon! Please let us know what happens at the gastro. 

[nvsmom]

I agree. Let your mom (and siblings) know that they can just have the blood test. An endoscopy is not an absolute need for a diagnosis - I've never had one done either.

Good luck.