Possible coeliac disease - confused!

[sparkleghost]

Hi everybody

I recently had some blood work done as part of a referral to the recurrent miscarriages clinic. I honestly wasn't expecting anything to come of this, as l've already been diagnosed with adenomyosis and endometriosis (stage 4 with bowel involvement) for some time now - so l'd assumed my miscarriages were related to that.

Everything had been coming back fine, but yesterday I got a letter to say that my tTG IgA was 29.7 and is an indication I may have coeliac disease. The letter is a bit confusing because it says "IgA TTG borderline; IgA endomysial not detected. In line with NICE guidelines consider endoscopy and jejunal biopsy if coeliac disease is clinically suspected." I'd thought borderline must mean I'm only just over, but from what I've read online, 4-7 is the typical range, 10-15 is borderline and anything over that is high. The result itself is in red and has (H) next to it.

The letter says I've been referred to gastroenterology, so l'll be seen by a consultant and presumably have an endoscopy & biopsy judging by the letter.

I'm just wondering what the chances are of this being a false positive, since the IgA endomysial was negative...? | had a browse on here and it seems like everybody else had much higher tTG IgA levels when they were diagnosed. I'm sure I was tested for coeliac a few years ago but the blood work came back negative. Is there any chance my endometriosis has caused this result rather than coeliac disease?

The thing is, when l've taken a look at the symptoms I do have a lot of these - all of the bowel symptoms, B12 deficiency anaemia (which I've had for around 4 years), and another letter sent on the same day noted that I was very deficient in vitamin D (20.3 - another surprise as I spend a lot of time outdoors with my 2 year old).
I'd just fobbed off the bloating, daily diarrhoea and pain as being down to bowel endometriosis or IBS (which I was diagnosed with back in my early 20s, I'm 40 now). I am in pain a lot of the time but am used to it & again just attributed it to endo & adeno.

If anybody has any experience with results in a similar range leading to either a diagnosis or turning out to be a false positive that would be really helpful to hear about x

I would bet my life savings on it that you have coeliacs disease. False positives on coeliac tests are very rare, false negatives are much more common. Just because your endomysial was negative doesn't mean anything, my son's first test was negative too but 6 months later on second test his endomysial came back positive, both times ttg was raised.

IIRC the ttg test is more sensitive and more likely to be correct if positive. It very rare to get a false positive ttg. I would bet you have coeliac disease too. You must keep eating gluten until your endoscopy.

About 10-20% of people with coeliac disease don’t have the antibodies so you are quite possibly in that group.

It could be wrong. My blood test came back that I could have coeliac but my endoscopy result was that I didn’t. My blood test was just over borderline

My tTG IgA was 120 and was sent to Gastro who did an endoscopy.
My only symptoms were anaemia and I never really gained weight.
I thought Miscarriage was a symptom too. Once you have the endoscopy you'll know for sure.

Thank you so much for all your replies 💕 It’s really helpful! And the advice on continuing gluten - the letter tells me I should follow a gluten free diet in the meantime!

If you go gf (if you have coeliacs £ now you will have a negative endoscopy when the time comes as your villi will have healed. But that would be a false negative. They could possibly tell you to reinstate gluten for six weeks prior to an endoscopy but the problem is when you reinstate gluten you’ll probably react a lot worse. Like non stop projectile vomiting

Gosh I definitely don’t want that!! I’ll continue as I am until after I’ve had the endoscopy then. So grateful to you all, thank goodness I posted!

DD was (finally) diagnosed at age 12 - she was very symptomatic but her results were definitely borderline - 11 I think to begin with. So much so that I had a mother with a coeliac child who I’d asked for advice scoff at me as if it were a competition! Everyone is different, and a borderline result does not rule a diagnosis out.

Hopefully you’ll get a clear answer and if it is coeliac you have a pretty straightforward treatment path. Best of luck with it all, OP

I had undiagnosed coeliac disease during my ttc journey, that involved 9 rounds of ivf and a miscarriage (from ivf). My coeliac tests always came back negative despite worsening bowel symptoms. Eventually after I got another autoimmune disease and one of my kids had symptoms of coeliac disease I got duodenal biopsies done which gave me my diagnosis. During ivf I had tests (Chicago blood tests) which showed I had immune issues but we didn't know why. Anyway long story short I'm certain that my undiagnosed coeliac disease was the reason so many of my attempts failed. It was all otherwise unexplained. I hope you get tested and get the answers you're looking for and that your journey isn't as long as mine was.

(p.s. was successful in the end with steroids to dampen my immune system so I was lucky enough to have my family eventually but I think a gluten free diet would have been all I needed)