How were you or your child diagnosed ... - Gluten Free Guerr...
How were you or your child diagnosed with Coeliac Disease?
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My CD is also genetic - my mother had it and my daughter is undergoing tests now. I also have DH
I had 3 blood tests that were all negative. Was finally diagnosed after having both an endoscopy and a colonoscopy.
Yes my husband too, bloodtest is pretty unreliable, but they always hesitate at a biopsy because of the cost 
Many hospitals we know push the biopsy as 'the gold standard'. There's debate in Oz, USA etc on how they can improve the blood test rate and prevent people having the biopsy. Which would be great. However, a lot of people welcome the biopsy in a sense as they at least get swift feedback and know for sure if they coeliac disease - which is important before embarking on a big lifestyle change for life. Here's to better less invasive tests in future!
A good example Katie of how some people show 'false negatives' in the blood tests. Glad they eventually found the cause of problems for you.
By accident. Had variety of symptoms which lead to barrage of tests some of which happened to be colonoscopy and endoscopy on the same day. No one had mentioned Coeliac until I got the letter.
I found out I had CD then they tested my mum who has suffered like me, she has it too!
- was diagnosed with Coeliac after a biopsy for DH. After years of throwing up bloated stomachs and trips to the toilet. It was confirmed by endoscopy!
Hi great to see so many votes already. Interesting stats. Don't forget to post up a comment if you voted other or self diagnosis. Would be really useful to see everyones journey.
My CD appears not to be genetic. None of my relatives have it, nor do my children have it.
Enough evidence within family to suggest a genetic link, but the person I would really need to ask..isnt here.
When eventually I did get a diagnosis.....it proved what I had been saying for years.
Plus ample other auto-immune conditions scattered liberally throughout paternal and maternal family....
Fun isnt it??
With best wishes
I think I also inherited this but the person I need to ask... isn't here. I think she suffered for years but the technology and medical opinion was very different 35 years ago.
I wonder now if she had avoided gluten would she had suffered from her other diagnosed auto immune disorder to the same extent.
It makes me really sad.
It is very sad but thankfully awareness & better testing is improving over time. Years ago they put suspected coeliacs on a banana diet and thought they'd grow out of it. We've come a long way - although like much science and medical research not far enough for everyone. Here's to future testing becoming better and mainstream and greater early diagnosis.
I was diagnosed by endoscopy in the mid-90's before they had developed a blood test
Bit of a limited poll really - initially for me it was discovered by self diagnosis after years of not getting anywhere with the medical profession. When they eventually caught up & were 'reading the same page as me', it was confirmed through positive gluten blood test & positive ttga & ema blood tests (even after going gluten free for 5 months!). They now believe I have been suffering with CD for 20 years (!!) Still going ahead with the Endoscopy next week.
Thanks virgolizzy - hopefully when you have the results of your endoscopy you'll be able to vote on one clear category. Good luck with it - do get the throat spray and sedation together makes it a lot nicer. Update us when you know the results. Often people recognise the symptoms far before Drs do and self diagnosis leads to tests which result in a diagnosis.
Hi all, I was diagnosed with a blood test, then an Endoscopy at the age of 41. We are currently waiting blood tests for our youngest of 4 boys for CD, the first test showed a negative but we have been told that he will be diagnosed (or not) by Biopsy regardless of this test due to his symptoms. He's only 19 months so it's going to be hard to see him go through the process.
Hard DaveKnapp but worth it. I would think they will be putting him out for the procedure so he won't be aware. If he is found positive what a result for such a young age. He won't experience the long term damage that so many older Coeliacs, who've had such a late diagnosis experience with the ongoing health problems as a result. Also I think they is going to be such a culture change in attitude to foods, and gluten free eating so hopefully he will have an easier time managing his diet. Good luck 
blood test was inconclusive, two skin biopsies were not 100% definitive but showed enough for the consultant to confirm my suspicion of coeliac disease. GP has never 'formalised' my diagnosis so I get no follow-on care whatsoever.
I was diagnosed by endoscopy after I was noted to be anaemic after suffering a sub clavian DVT
My husband was cycling through eye conditions that would not go away. Eventually he got non stop nosebleeds and I started to do my own research and then recalled his mother had eye issues. She too was diagnosed late in life with a gluten allergy. They are "silent celiacs" or "asymptomatic". We immediately changed his diet and the conditions went away. Saw his GP 3 months later and he asked him to go back on Gluten so he could get the blood test. Within 2 days he had an eye infection. The test was done early as he obviously couldn't stay eating the gluten again, but the test came back negative (meaning it was saying he was not allergic). The GP said that it was obvious he was and that it was causing the eye issues. That was just over 10 years. He has not had any eye issues since; however, he was recently diagnosed with diverticulitis.
My diagnosis was really very stressful. I had several blood tests increasing my gluten intake each time until finally, the doctor sent me through for an endoscopy/biopsy which showed that I was in fact not a Celiac. However, I have been gluten free since and fell much better. I am still without a formal diagnosis.
