Coeliac disease blood results

[mindutopia]

I have been having regular abdominal pains for at least the past 3-4 months. I also have what I would consider to be IBS like symptoms, which I've chalked up to extreme stress. It's been an abysmal year, with all the usual stresses of COVID, job stress, homeschooling, etc that we've all had, plus some really horrible traumatic things happening in my family (have had to go NC). Anyway, that is another thread, but suffice it to say, it's been a really horrible year. I assumed many of my digestive symptoms were stress related, but I've been having dull ache in my upper right abdomen pretty much consistently for the past few months. I assumed it might be my gallbladder. I finally got in touch with the GP last week as it just keeps getting worse and worse.

GP tested me for a number of things and put me on a PPI assuming it was potentially a stomach ulcer. The blood results have come back today and there are a few things abnormal (including high iron levels, which is odd, but too be re-tested). But IgA also came back high, which doctor has said is indicative of Coeliac.

I have honestly never even considered this and can't necessarily see any pattern with certain foods causing it to flare up (though alcohol certainly makes it worse, but maybe I only notice that because I only drink once or twice a week?). GP said she will refer me on to a specialist and to stop eating gluten (my understanding is that this isn't correct and that restricting gluten can cause any future tests to be inaccurate - so I'm ignoring that advice). Would anyone be able to shed light on what my test results mean?

If I understand correctly, there are two IgA tests usually done. One for serum/total IgA and one for IgA tTG. My test results only say 'Immunoglobin A' and the result is 4.77 g/L [with range of 0.8 - 2.8]. So I'm not quite sure if this is total IgA or tTG? How definitely would this indicate coeliac? And am I correct in assuming I shouldn't restrict gluten at this stage?

You're right it to restrict gluten.

Check out the coeliac Uk website for more info. It's perfectly possible not to have significant symptoms with coeliac disease

I've always been told to keep having it or other tests won't show it. Guess it depends how long before the next test. I am gluten intolerant but can notice a difference in about three days of avoiding it. I think I'd be tempted to try avoiding it if next tests are weeks away. Sorry I dont know about the blood tests.

When I was tested for coeliac, I was advised that if I stopped eating gluten beforehand, the test results would be negative.

Also, it's interesting that you mention you think it might be your gallbladder. That's what mine was eventually determined to be. I am now on a bile-acid sequestrant, which has has fantastic results. It might be worth asking if you can try one.

I’m waiting for a coeliac test next week and was told to keep eating gluten. When my son was tested a few years back we had to wait 3 months whilst I reintroduced gluten into his diet as I’d kept him gluten free for a few months already.

My symptoms are apparently not classic gallbladder symptoms (no sharp pain, only a dull ache that is constant), which is I think why it wasn't investigated.

I guess I am just wondering if the test result I've received makes sense for a possible diagnosis of Coeliac? From what I can see, it's IgA tTG that is a more definitive test, but I suspect that the result I've been given is just total IgA (not tTG). The instructions on the blood draw form said 'Coeliac screen' but all I can find on Google is that a low IgA (IgA deficiency) can indicate Coeliac, which is why IgA tTG is then screened for. But I can't see that the GP has done that.

Elevated IgA and some of the other results I had can also indicate autoimmune liver disease (the pain I have is in the area of my liver), and that's actually what I'm more concerned about. Just really wondering if the result I have warrants concern in terms of Coeliac? The GP I spoke with was not my normal GP and she didn't seem to know what she was talking about, so I'm not convinced. They are apparently referring me to a gastro. But I've also booked myself in for a private Coeliac test and some other autoimmune tests just because I'd rather know than keep waiting and wondering what these results mean.

@unebaguettepastropcuite

When I was tested for coeliac, I was advised that if I stopped eating gluten beforehand, the test results would be negative.

Also, it's interesting that you mention you think it might be your gallbladder. That's what mine was eventually determined to be. I am now on a bile-acid sequestrant, which has has fantastic results. It might be worth asking if you can try one.

Can you tell me what your symptoms were? And what they eventually diagnosed you with? How were you diagnosed?

My symptoms were pain, cramps and diarrhoea. Things like salad went straight through me. Symptoms would ease for a day or two if I cut out certain foods.

Never got an actual diagnosis - they proceeded by elimination and the bile-acid sequestrant was more of a "try this and see if it does anything". By deduction, it seems to be bile acids diarrhoea - the gallbladder, instead of releasing bile gradually, dumps it all at once when you eat; the excess bile irritates the colon. I have taken both Questran and Colestid (there are supply problems, so I sometimes have to switch)

Why dont you give Coeliac UK's helpline a quick call - their number is on the website www.coeliac.org.uk/home/ and they'll be able to shine some light on the figures.

Don't stop gluten until after you have been seen at clinic. Different labs to different tests usually it's anti Ttg which over 10 investigate and 5-10 repeat after a time frame...would need to double check this as can't remember 🤣.

Thanks all, I’ve booked myself in for private blood tests on Monday as they haven’t actually tested my IgA tTG only IgA (which was high but then no further follow up). I’m not quite sure why they’ve made the leap to coeliac, I suppose because of symptoms. They’ve referred me to a gastroenterologist anyway but I’d like to go armed with as much information as I can. The tests altogether point to something autoimmune, but I just want to figure out what. I also had high serum iron and transferrin saturation, which points more to haemochromotosis. But apparently these can be linked, which is odd.

Bile acid diarrhoea is a common sequel to coeliac disease.

As the immune system damages the gut lining it is unable to reabsorb the bile acids that are normally produced by the gall bladder then later resorbed by the gut and recycled.

This excess of bile acids in the digestive system causes diarrhoea/ibd symptoms.

So the two diseases may go together quite often