Waiting for a coeliac investigation.

[Lagoonablue]

Aaaaaagh! I have waited 9 weeks for my appointment with the gastro to come through and the bastards have cancelled it and rescheduled it for end of September! FFS. I have had a positive blood test but can't go gluten free yet obviously. Thing is I am really suffering. Have terrible anaemia and all the associated problems and my frigging hair is falling out! Even when I am seen at end of Sept I understand it is the. Referral for an endoscopy so more waiting. I will be lucky to get a diagnosis this side of Xmas I reckon.

If I could afford it would go private but is over a grand for a private endoscopy so will just have to wait it out. Am so upset. Have been counting down to the appointment and now it's being moved.

Sorry. Just venting, nothing I can do.

That's pretty rubbish. I felt like death before I was diagnosed so feel for you, that's a long wait. May be call and see if you can get a cancellation?

Dd was diagnosed based solely on bloods last year - I believe there are two blood tests, one is the first one you will have had which measures enzyme levels and if you are off gluten will go back to normal. The second is for a blood marker of some kind which will always be there. Both positive and wham, DD was able to go straight into gf as soon as the second blood was taken. Can you speak to your current consultant or private practice to see what the diagnostic would be in your area? Might be a lot cheaper and quicker than you hope.

That diagnostic was adopted in my part of the uk last October.

I'd taken myself off gluten by the time I got my referral for the endoscopy, and the consultant was fine-just said make sure you eat gluten containing foods for three weeks before appointment. Could you try that, do you think?

How much does being able to have food on prescription matter to you? I was diagnosed while living abroad and now react quite severely to any gluten. Not having an NHS diagnosis has not affected any area of my life except cost of gf food.

I am probably coeliac but react so badly to gluten that I can't deal with eating it for weeks, so I haven't been tested. (I also have auto-immune issues which can be linked to coeliac). I just avoid gluten, I am not bothered about prescription foods. However, whilst in A+E for an unrelated issue, the Doc I saw, herself a coeliac, said that I must be tested, as according to her it increases the risk of several cancers including some breast cancers, so i am worried about that although I can't find anything about it online- maybe someone posting would know? Also if there is another marker that is permanent why can't one be tested without eating gluten? A coeliac friend is currently dealing with breast cancer so I am keen to find out if I do need regular checks of some sort as the doc suggested.

That's interesting helly I know there's an increased risk of small bowel cancers and lymphomas. A recent large study found there's a decreased risk for some hormone related cancers.

There's an increased risk of bowel cancer due to the constant irritation/inflammation and the auto-immune reaction from your bowel coming into contact with gluten. It's a bit like smoking - once you stop, your risk gradually returns to (almost) normal, but is never quite the same as anyone else because there was significant damage done once. The sooner you stop eating it though, the better.

It's a bit like they advise you to take enormous amounts of folic acid when pg if you are coeliac. I asked my GP about this (been eating gf for 14 years now) and she said not to worry too much as I've been fine with lactose etc for 12 years and my bloods show normal nutrient absorption. The damage does heal!

I do sometimes worry about the state of my gut, as I only stopped eating gluten in my 40s, I've been gluten free for about 3 years now. I am not sure if one is born a coeliac? Or do we inherit a tendency that may or may not develop? A coeliac friend has two coelic dcs out of 6, so I assume it is heredidary, but both my dds had a negative blood test, is that enough to be sure?

Oh, and I did read about a gene test, but again, I am not sure if I tested positive for the gene that would mean I am definitely coeliac, or just that I have a possible tendency? (I assume with the gene plus symptoms that would be fairly conclusive, but I don't know if I am correct).

I found the delay between blood test and endoscopy hugely frustrating as well, especially when they're so almost certain that they know what it is. It's an extremely draining stage.

I ended up badgering my GP and she was fabulous about getting on the case of the gastro ward and getting me bumped up the list. I'd go in and lay it on thick about the significant and detrimental impact it's having on your overall health. May also be worth calling the gastro ward direct and explaining your situation to see if you can be called in on short notice if there's a cancellation. Is there anything else you can do to improve how you feel in the meantime? Prescription iron tablets for the anaemia, calcium supplements to minimise osteo issues, etc, etc. Go and badger your GP for that as well.

I know it's not much consolation at this stage, but I got my diagnosis confirmed fairly quickly (within a few days I think) of the endoscopy. Once I'd started on the GF diet my symptoms improved rapidly and it wasn't really that difficult a diet to get to grips with once you know you've got to get on with it.

I'll stop rambling now... good luck!

Having the coeliac gene does not mean you will develop coeliac disease, it just means you could develop coeliac disease. I have 2 coeliac DCs, DC1s symptoms came on slowly over a period of time, DC2 caught a tummy bug as a toddler and his coeliac symptoms went from virtually none to full blown in the space of a week. So it develops in different ways in people. DH and I have been tested but tests came back negative. We are both GF now 99% of the time, but we do occasionally have gluten but neither of us get any side effects, yet one of us has passed the gene on to our DCs.
The advantage of being tested is you can have regular tests for other issues that can be linked to coeliac. My DC1 has to be monitored for Vit D and thyroid function. DC2 is monitored for iron and platelets. I know coeliacs who need Vit B12 supplements. Coeliac can lead to an increased risk of osteoporosis, so women with coeliac will often have bone scans. The advantage of a diagnosis is it makes access to all these test much easier. Also the blood test is the only way to be sure you are GF, it is always possible that tiny amount of gluten are creeping in and causing some damage to the gut without causing major symptoms. With my DC, DC2 is extremely sensitive and has very severe reactions to the smallest crumb, DC1 however can have a small amount sometimes without major symptoms, yet that does not mean damage is not being done.

I do seem to react now to tiny amounts, I was baking a normal cake for my dd, forgot it wasn't GF, and licked the spoon! Realised right away, spat it all out, but that was enough to give me food poisoning like gastro symptoms for a couple of hours. I have thyroid problems, my Mum has thyroid problems and bad osteoporosis, it had never occured to me that that I could have inherited it from her, but perhaps she is actually coeliac. If I had the gene test and it came back negative, would that mean I definitely am not coeliac?
Also I thought the blood test couldn't pick up low levels of gluten creeping in, there is a certain amount one has to eat every day for weeks before the blood test, I think it was at least one slice of bread?
My dds tested neg with the blood test, but if I have the gene they could have it also and then become coeliac at any point, is that what you are saying? How would I know, given that some people are symptom free? It is all so complicated!

My Mum has Coeliac and I was tested but the blood test came back negative.
She has told me to still go gluten free as I have very similar symptom's to her and she is not convinced about my negative blood test.

Thanks for the replies. Still waiting for my appointment.......