Possible coeliac disease - update!

[sparkleghost]

Hello lovely MNetters,

I posted a couple of months ago about my surprise tTG-IgA positive result of 29 (endomysial was negative) after having blood work done through the recurrent miscarriages clinic.

I received some really helpful advice and support here (very much needed!). After this I also wrote to coeliac UK - they echoed your advice that I should continue gluten until I’d had my endoscopy and recommended two meals containing gluten a day.

Luckily things progressed quite quickly from there. I had my endoscopy on the Wednesday (2nd Sept) just gone and a follow up is booked with Gastroenterology for 22nd Sept. 4 biopsies were taken.

My discharge notes read “moderate scalloped mucosa in the 1st and 2nd part of the duodenum suggestive of coeliac disease; performed cold forceps biopsy to rule out coeliac disease”.

I’m just wondering how strong a diagnostic finding this is and if anybody went on to have negative biopsies after? If it’s not coeliac disease, what else could have caused this & the positive tTG-IgA?

I know I should be delighted if it turns out that I don’t have coeliac disease… but the thing is, since increasing my gluten intake in the lead up to the endoscopy I’ve been feeling SO much more unwell. Worse and more frequent bad tummies (3-4 times in a morning with intense cramping), a return of the dreaded grapes of wrath (haven’t had piles since I was pregnant!), exhaustion, feeling weak and dizzy, nausea and vomiting. My vitamin D and B12 levels were very low (tested during the same blood work) and I do already have stage 4 endometriosis (with bowel involvement) so I know this won’t have been helping.

The other thing I wanted to ask about is DS. Amongst my many losses & TFMR I’ve been very lucky to have my gorgeous 2.5 year old. I know there is a strong genetic component to coeliac disease, so if my biopsies come back positive, he should be tested. Does anybody know what that would look like in this age range, in terms of symptoms and how he’d be tested? He does have diarrhoea sometimes and does seem more tired than he should be. I’ve raised this before but it’s been explained by other factors (“toddler diarrhoea”, obstructive sleep apnoea which he is seeing an ENT about). He’s so little still, I can’t imagine them wanting to do an endoscopy?

Thank you in advance again for any replies and support x

I’d say you def have it.

yes direct family should be tested - it would just be the blood test. My son was diagnosed at 7, weeks was tested but negative till about 12 years later I suddenly couldn’t eat any gluten without running to the loo so it can ‘just’ come on.

Thanks so much for sharing. I’m going to ask my GP about testing DS as soon as my biopsy results come through (assuming they’re positive!) x

Id also say you definitely have it. My son was diagnosed last year, his first endomysial was also negative but with raised ttg. The next test he had 6 months later the endomysial was now positive.