False negative coeliac test?

[Jade3450]

Symptoms are bloating, chronic constipation, and now a recurring itchy rash on backs of thighs and upper back, sometimes also on the backs of my arms (symmetrical).

Also on/off muscle aches for years and my iron levels aren’t great (though not super low).

Mum has all sorts of digestive issues and has done for years and my DD15 also gets bloating and joint pain.

I also have positive ANA.

Thing is, I had a TAA test about 18 months ago and it was negative (0.1, so as I understand it very low). They said highly unlikely to have coeliac disease.

Could this have been a false negative? Is that level TOO low?

I doubt I’ll persuade them to test me again, will I?

Were you still eating gluten when the test was done? My friend is coeliac and I remember when she was tested, they told her she had to continue eating gluten right up to test day as otherwise the test would not show the inflammation marker which indicates the intolerance to gluten. Seems counter intuitive but makes sense. So if you didn’t do that, perhaps there wasn’t enough of the marker in your blood?

After the blood test came back positive I believe she had an endoscopy, which confirmed the diagnosis.

Alternatively, you might have some other digestive issue, such as Crohn’s or diverticulitis. I’m not a doctor but also have friends with those conditions. Have you been investigated for those?

I was eating gluten but probably not with every meal.

I don’t have severe enough symptoms for it to be diverticulitis or Chrohns. I don’t get tummy pain or diarrhoea or blood in my stools etc.

The tummy symptoms are pretty mild tbh - it’s mainly the existence of them alongside the rash and blood inflammation markers that make me wonder.

Have you ever tried a strictly gluten free diet?

My coeliac test has come back negative twice despite having the symptoms and my son and niece both having coeliac disease. I went GF a year ago anyway because of my son we have a GF house, I wouldn't say it's solved all my issues but it also hasn't solved all of my son's issues yet either and he IS diagnosed, we're both still on medication for reflux and constipation. But it definitely has made a difference in other ways, for me less headaches, less nausea, appetite increase and weight gain (which I needed). For him his paleness has gone, he's also gaining some weight, he's stopped throwing up and feeling nauseous.

I did about 5-6 years ago and I felt pretty good, but I don’t feel terrible on it iyswim.

The rash is a new thing though and im now piecing things together and wondering. But the negative test is likely to mean they won’t test me again.

I've twice had the blood test for coeliacs, about 15y apart. Both clear negatives. But cutting out gluten makes a massive difference to my gastric well-being and my mental well-being, and my skin. (I don't get the classic herpetiformis rash, but I get very itchy and my knees and elbows become sandpapery.)

I avoid most GF breads because they also often give me the same gastric problems as gluten. Probably because they are ultra-processed with all sorts of additives that I do not recognise as food.

The treatment for coeliac is to cut out gluten, and address any deficiencies that resulted from malabsorption due to gluten. Why not try that anyway? If you're still feeling poorly after several months of conscientious gluten free, then it's worth going back for more tests.

You can push for retest. Check IgA too, if this is not normal then the coeliac bloods dont always show up. Ask for a general test too.