How important is it to actually be diagnosed with coeliac disease??

[secretreveleater]

A few months back Dr suspected I had a stomach ulcer so I kept a food diary to see if I could pinpoint any particular irritants. I very quickly saw a pattern when eating anything containing gluten so stupidly cut it out of my diet before speaking to my Dr. I didn't eat any gluten for 4 weeks then introduced some every day for 1 week. My symptoms completely disappeared when I was gluten free and came back with a vengeance when it was reintroduced.
I saw my Dr yesterday and told him about my gluten cut/reintroduction.
Dr is now fairly confident that I have cd (symptoms fit very well apparently)although obviously I need to be tested to be certain.
I have to eat gluten everyday for the next 5 weeks to get accurate test results but I already feel terrible and don't think I can do it for weeks. And it's my understanding that I'll need further testing to be absolutely certain so 5 weeks will not be the end of my misery.
Do I really need to be diagnosed or can I just follow a gluten free diet on the assumption that I have cd and with the certainty that a gf diet makes me feel healthy and well whether I actually have cd or not.....

[DottyDot]

I think it's really important (speaking as someone who was diagnosed via blood test and biopsy about 8 years ago) as it means you'll be monitored for things like bone density - I was undiagnosed for years and as a result have osteopenia, which was only picked up via a dexa scan once I was diagnosed. You'll also hopefully be seen at least once a year and have blood tests to make sure everything's OK.

Because of the links between Coeliac and other autoimmune disorders I think it's important for your GP to know - just in case, for example, your thyroid starts playing up (link between this and Coeliac) and even type 2 diabetes.

So all in all, although it's a complete pain, I'd stick with having gluten and getting the tests done.

[secretreveleater]

I didn't know about the links between cd and other ailments. I think I have probably had it for at least the last 10 years too.
It's interesting about thyroid problems. My dad has an underactive thyroid and believes he has IBS (never diagnosed) which I've read is commonly suspected instead of CD. Maybe he should get tested too.
Is CD hereditary? Will my children need to be tested too?

Sorry for all the questions. I should probably go back to my Dr with all the questions I didn't think to ask!

[Pootles2010]

Yes it can indeed be hereditary - your dad should definitely get tested!

My mum has CD, I had a blood test but showed negative thankfully. My mum has several relatives that have died from bowel cancer over the years, we have wondered if CD may have been the cause . If so, gutting to think it could have been so easily sorted.

[DottyDot]

Hi - yes immediate family members should be tested if you are diagnosed as Coeliac as the chances increase from around 1:100 to 1:10.

[Lagoonablue]

Don't want to hijack but have had a positive blood test and going for an endoscopy. Was anyone given a colonoscopy too? Doc wanted me to have one but I refused as don't think I need one. I guess if the endo is negative then I will have one but reading on blood test was high and he thinks coeliacs highly likely.

[DottyDot]

Hi - no I've never had a colonoscopy, just an endoscopy, which I didn't really want so insisted on a massive dose of sedative . Good plan to see what the endoscopy shows up first...

[Lagoonablue]

Thanks Dotty. I think the doctor I saw was not an expert on coeliacs tbh. He was a general GI guy. Saw my age, over 50 with anaemia and weightloss and so decided to do a full follow up of tests. I don't have any bowel problems or real gastro symptoms generally. It has been the anaemia which has been the problem for me.

[DottyDot]

Yes I had chronic anaemia, now much better since being gluten-free!

[secretreveleater]

So does anybody have any magic tips to help ease my incredibly painful stomach while I wait for testing??
I can cope with all the other symptoms but struggling with the pain already....

[Bumply]

members2.boardhost.com/glutenfree/

Try asking the question in the above forum. They were very helpful when ds2 was first diagnosed.

[DottyDot]

no sorry It's horrible - you have my sympathy, but I don't remember anything being particularly good at getting rid of the pain to be honest.