Hi All I've had a positive blood test for celiac. Been referred to hospital. The consultant says the blood test dos'ent make it conclusive

[saabx30]

Just had endoscopy and colonoscopy on wed this week

Another consultant who did the endoscopy suggested I eat everything I like for the next 3 weeks until the results come back!

Confused I'm I celiac or not ?

[Regalbirdy]

Hi Saabx30,

I wish I could give you a really clear answer - but it is for your consultant to do that.

What I can say is that I understand your confusion and frustrations very well, having been through something similar myself.

The medical profession don't like to diagnose Coeliac Disease until they've seen the results of the endoscopy. It's currently the best way of achieving a correct diagnosis. That said, I believe that sometimes it is possible to diagnose just on blood test results alone but I think this depends on which blood test you have had and possibly on not being able to have endoscopy for medical reasons.

The tTG (tissue transglutaminase) blood test is normally accepted as the most reliable. It looks for antibodies made by the immune system in response to the gut being exposed to gluten containing foods.

If you have had this one then there is a high probability that you are a Coeliac.

If you have been told to keep eating gluten for the next couple of weeks (and can tolerate doing so); then it probably is a good time to make your peace mentally with some foods that you may never be able to eat again if your diagnosis is confirmed. Personally I think it is better to take the time to get your head straightened out now rather than risk falling off the gluten wagon in the future...!

I was fortunate in that once my endoscopy was over, I knew that all my Coeliac tests had been completed. The day after my endoscopy I gave up eating gluten by choice because I had nothing to lose. I only had about 10 days to wait until my results and if they had have come back as negative for Coeliac Disease, then I would have just gone back to eating gluten products again. That way it was something I chose to do for myself rather than something I had forced upon me by doctors. A subtle difference I know! but one that was important to me.

I would push to get the results as soon as possible - in my opinion three weeks seems quite a long time to wait for something that I think should be classified as urgent. If you are a Coeliac then sooner you stop eating gluten, the better it will be for your health.

Can I ask what part of the world you are you in? In my limited understanding it is not that common to have a colonoscopy as well as an endoscopy when seeking a diagnosis of Coeliac Disease in the UK. I'm not sure what other parts of the world do though.

Best of luck.

[saabx30 in reply to Regalbirdy]

Hi Regalbirdy

Thankyou for your reply.

I'm from Chesterfield.

They did the colonoscopy because bowel cancer runs in my family. A polyp was found which they took away and has gone to histology results in 3 weeks as well.

[Regalbirdy]

Oh my!

It sounds like the doctors are doing their best to look after you. I hope you get the all clear from the colonoscopy.

Coeliac's have a slightly higher risk of developing bowel cancer if they are not on (or don't maintain) a gluten-free diet.

By the way, when my Coeliac Disease diagnosis was confirmed, I was advised that I should encourage all my first degree relatives (ie: mother, father, brother, sister, children) to have a Coeliac blood test because there is a genetic link which puts them at higher risk of also having it. If you get a confirmed diagnosis of CD, you might want to consider mentioning screening to any members of your close family.

I now think that my paternal grandfather was probably an undiagnosed Coeliac and I inherited it from him. He died some years ago so I will never know for sure.

If you haven't already, it's worthwhile taking a look round Coeliac UK's website. The gluten-free diet does take some getting used to at first and they are quite a good resource for general information.

[saabx30 in reply to Regalbirdy]

Thankyou Regalbirdy for your help and advise, I'll have a look at the website. I haven't before as I thought I'd wait for my results

[GlutenfreeGranny]

Hi Saabx30, Your experience almost exactly mirrors mine. My GP was pretty certain that the endoscopy and colonoscopy would be positive for CD though, so I decided to go GF immediately afterwards and have maintained this for the last 8 months. It was hard to get my head round it at first, but I agree with Regalbirdy that the Celiac UK website is very helpful, and, if you register with them, the GF food directory is a very good starting point.

The best part is how much better I felt within 2 weeks - I had never realised that my digestive system was so dysfunctional!

Good luck!

[DartmoorGuerrilla]

If I were in your shoes I would eat all my favourite gluten containing foods and have a think about what I love and really want to replace or replicate in GF form (pork pie, homemade quiche), what I will do to replace foods I only eat for convenience (sandwiches), and what I only have as an occasional treat but am not fussed about losing (doughnuts). Then I would buy the best doughnut I could find, say goodbye to it cheerfully, and write out a shopping and/or cooking plan for the rest. With any luck your tests will come back negative and you can throw the list away! Good luck

[Lynilou]

Can I add my agreement to the previous comments, also that Chesterfield Royal was very good in ensuring a positive diagnosis for coeliac for me, through endoscopy and biopsy, even though my blood tests did not show anything. I also had to wait for three weeks but as I was convinced a gluten free diet was helping I started to follow it before the follow up consultation. The consultant had told me during the endoscopy that it was a clear case so the follow up was just a formality. PS The health food shop in the Shambles has a gluten free menu!