Coeliac. If blood test positive........

[Lagoonablue]

Will the endoscopy always be a positive for coeliac? GP says I am coeliac according to the bloods but need endoscopy to confirm. Why? I don't want an endoscopy tbh! Any possibility that the blood test could be wrong?

Just not looking forward to a gluten free lifestyle!

No beer! Or Pizza! Or cake! Don't tell me there are substitutes because I know they won't be as nice!

Feeling sorry for myself..........

[Lagoonablue]

Anyone? Hoping the blood test is wrong!

[Roundbales]

Bump!
Watching with interest. I've just had my blood test and waiting for the results. Hope all goes ok for you.

[CMOTDibbler]

Pretty much a sure thing tbh, and is all that is necessary for a diagnosis under some rules.

The diet is a pain at times, no doubt about that, but you can have pizza, beer and cake - and the gf versions can be really good. Some are minging tbh, but you work out what you like very quickly

[Theunincredibles]

Hi, yes the blood tests can be unreliable. The only way to get a confirmed diagnosis is through biopsy which will see how much damage there is to your gut. The bread is a bit naff but GF Pizza and cakes don't taste much different.

[Meglet]

I'd doubt the blood test is wrong.

I had years of IBS and the consultant tested for coeliac twice because I had all the symptoms. Both times it was negative. I've had a colonoscopy, and endoscopy and CT scan..... All clear .

The pain stopped when cut out gluten for a few weeks. My dietician said he was seeing more people who presented as coeliac, always tested negative but improved 100% when they cut out gluten. So he gave me the go ahead to go gluten free and it solved everything. There's another poster on here who's really good with coeliac info, hopefully she'll be around soon.

Gluten free isn't that bad TBH. The expense and learning curve is cancelled out by no longer being in pain. Big supermarkets all have nice gluten free ranges (sainsburys frozen gluten free pizza is the mutts nutts ) and I've discovered frozen gluten free yorkshire puds! Although I accidentally ate gluten gravy the other week and was ill for a few days.

[nomdemere]

I am not coeliac, but have a 6yo coeliac and a 4yo probable coeliac. I eat gluten-free because they do - our house is a completely gf zone.

In children, I think they now say that a TTG reading (the blood test) of over 100 plus a positive gene-test (another blood test) is proof enough of coeliac, and no endoscopy needed.

If your TTg reading is high (over 100) I think it's very unlikely that you are not coeliac.

Going gf is a difficult transition, and I know that some people have a very intense emotional reaction to doing it. It affects your life considerably - work, social life, convenience.

My approach was to refuse to be at all negative about any of it, and immerse myself in finding out info about it (there's a good book by someone, surname Gazzola, that you can get on Amazon). The Coeliac UK website is also good, and this forum can be helpful.

The big plus is the improvement in health - my 6yo is a totally different child now, and that makes it all worthwhile. I can understand that it's easier for me to feel that way because it's my child that's affected, not me IYSWIM.

As a by-the-by - for the first 6 months of being gluten-free at home (and whenever out with the kids, so 99% of the time), I really craved 'proper' bread - on the rare occasion DH and I went out alone, we'd scoff a whole bread basket between us.

But after that, I lost my taste for it. I think there is an addictive quality to gluten, and once you break the habit your body loses the desire for it. I really don't care about having bread/pizza etc. any more, and if DH and I are out, I find myself generally choosing things that are naturally gluten-free (like meat/fish/vegetables etc.) Strange.

By the way, I expect you know this, but all your first degree relatives (parents, children, siblings) should have a coeliac test too, if you are diagnosed.

[Lagoonablue]

Thanks. Didn't realise I should get the kids tested.

I don't know what my blood test reading was but the prompt for the testing was longterm anaemia, low ferretin, folate and b12. In fact I posted on here about that and some helpful person suggested coeliac and so I suggested the test to my GP. Thanks whoever you were!

I have no chronic gastro problems I don't think. Occasionally but often feel bloated and am very skinny. Just can't gain weight. This plus the anaemia problems and now the positive blood test. I am psyching myself up for a confirmed diagnosis.

Pah! Tell me of this GF beer......

[MoreBeta]

lagoonablue - the gut biopsy is the gold standard test. that is what you have after the blood test. Do NOT stop eating gluten before you have the gut biopsy.

I am non coeliac gluten intolerant - negative blood test, negative gut biopsy but massive improvement in health after just 2 weeks on total gluten exclusion diet.

Don't worry - you can eat cake. You just need to start baking gluten free. It really just takes a bit of practice and now my whole family are GF when it comes to cakes and puds.

[notapizzaeater]

It's a nightmare at first but it does become much easier. Ds coeliac here. We are a 95% gf house (hubby still,has his toast in a morning) but all other meals are gf.

[DottyDot]

My blood test (when it was done, 7 years ago now) came back "strongly positive" but I still had an endoscopy as they like to have a look to see how much damage there is. I had exactly the same symptoms as you in terms of the anaemia, although I had no trouble putting weight on

It's good to have an endoscopy just for confirmation and so they can check how everything's looking. If you're nervous, ask for lots of sedation. I'm almost phobic about having procedures and once I'd cried all over the consultant, they gave me enough sedation to knock me out completely and I knew nothing about it - just like having a general anaesthetic!

You can cook and buy gluten-free stuff but it's not the same as the gluteny stuff -there's no getting away from it... I've learned what's almost as good though - freshly baked cakes with Doves Farm g-f flour and pancakes and scotch pancakes made with g-f plain flour are just the same and my usual treat!

Don't know where you live but if you're anywhere near Manchester there is the most amazing pizza place which does g-f pizzas called Dough and is my favourite place in the world to eat. You'll find similar places near you - my local Chinese also happens to have a g-f section of its menu because the Chef has a nut allergy and understands the need to accommodate particular allergies so this is wonderful!

Definitely feel sorry for yourself for a good while - I went to Tesco's after my diagnosis and cried all the way down the cereals aisle! These days I've learned to love doves farm cornflakes


Good luck and shout if you want recommendations of food to eat/buy - loads of us will help!

[Lagoonablue]

Ooh thanks. Don't live far from Manchester!

[DottyDot]

No problem! There's a brand new restaurant opened on the same street as Dough called T42 (I think) - the menu looks amazing - sorry can't do links from my phone but google it - looks fantastic and I'm hoping to go in the next few weeks.

[nomdemere]

Ocado is far and away the best supermarket for gluten-free - worth trying if they are in your area. I have just discovered a bread mix on there called 'Brilliant Bread' which is truly yummy. They're constantly adding new stuff.

Pizza Express gluten-free pizza is genuinely nice. And if you ask for gluten-free garlic bread, they will do a gf pizza base with garlic butter which is really tasty. The kids get it as part of their kids meal (replacement for the dough balls), and have to fend me off with their knives.

I don't like beer, and the kids don't drink it obv, so haven't tried much in the way of gf beer - though DH has and quite likes some. We drink wine mostly at home, which is always gf, as are spirits, even whisky. Cider is gf too.

I recommend joining Coeliac UK. Their newsletter etc. is helpful when you're first diagnosed - and the money for the subscription goes to an excellent cause - they are constantly campaigning for better provision for coeliacs, and are the reason - for example - why all the pizza chains now do gf pizza as standard.

Costa coffee do a very nice gf chocolate brownie. Although coeliacs often get a bit fed up of the gf cake offering ALWAYS being a brownie, my kids never seem to tire of that option.

[nomdemere]

Oh and if you're near Leeds, a new restaurant has opened there, called something like Oxford Place or Oxford St I think - which is run by a coeliac and is entirely gluten-free. Haven't gone there yet, but worth a visit!

As others have said though, v. important not to change your diet before the endoscopy, as that could cause a false negative.

You will also be entitled to prescription food, which is worth sorting out (some GPs are not very helpful, but they are obliged to give it to you if you are diagnosed).

[DottyDot]

Ooh - Costa also do a packet of 2 mini Bakewell tarts which are g-f and much nicer than the usual chocolate brownies!

You get to know where you can stop off and grab something on the high street. Lunches I think are the most difficult meals to sort out when you're out and about. I sometimes just buy a packet of roast chicken slices from M&S or a packet of prawns and munch on them. A lot of M&S's have an excellent g-f range.

Starbucks always has one g-f sandwich on the go which they change every few weeks.

[Lagoonablue]

Anyone know if you get diagnosis at point of endoscopy or do you have to wait a while for results? If so, how long?

[notapizzaeater]

Took about 4 weeks from test to results.

Tbh if gluten is making u feel so bad I'd go gf as soon as you've had the test.

[Lagoonablue]

Yes plan to go GF asap after test. I have noticed I am losing a bit of hair......grim. Think it is the anaemia.

[notapizzaeater]

I had anaemia beginning of year, my hair loss was horrific

[DottyDot]

it's also worth getting thyroid function blood tests - especially if your hair's falling out/thinning as there's a link between Coeliac and Graves (I have both) and Graves (overactive thyroid) can cause hair thinning/loss and weight loss.

[AcrossthePond55]

I agree, blood test plus endoscopy are the gold standard. Where I am (US) the results were given to me immediately, in the recovery room by the GI specialist along with showing me pictures of the gut lining.

There's no reason to fear the endoscopy. Totally painless & I was under anaesthetic for the test.

I've been GF for 10+ years. Things are 1000% easier now. I'll guarantee you that you won't have to give up a thing you love. There are GF versions of, or recipes for, everything.

[gointothewoods]

Endoscopy is the thing. Diagnosed at age 10 I think it was.
No big deal to me at age 10, but for you as an adult, maybe a lot worse.
Nowadays compared to 35 years ago when I was 10, there are tons of options regarding food - tons of restaurants that cater etc. If stuck you just eat meat, veg, potatoes, rice etc. Our favourite local restaurant is thai/ japanese, no gluten in pretty much anything they serve.
If you've had non gluten free pizza, pasta etc, honestly the gf stuff tastes not quite so good. however I make a delicious banana bread and plenty of madeira cakes etc that don't taste any different. Bread is an issue but the options on sale in supermarkets are increasingly good. Good luck!

[Lagoonablue]

Just got my appointment for consultant. Beginning of September! Ugh. Feel like I am poisoning myself in the meantime and getting worried about the hairloss.

Must feel terrible if you are a parent of a coeliac child and have to keep feeding them gluten while awaiting an appt.

I will carry on with the iron tablets and multi vits and hope for the best over the next few weeks. I really want to go Gf NOW so I can start to feel better but know I can't.

[AcrossthePond55]

Yes, the wait is hard. I had massive blisters on my hands that were so painful and itchy, plus the 'GI nasties'. But it's very important that you not go GF before the biopsy. I only had to wait about 1 week (US healthcare = less wait/pay more, NHS = free/wait more, not sure which is worse!). Isn't there anyway you can speed it up? I don't know the ins and outs of the NHS. I've heard MNers talk about 'going private' but I guess that's expensive.

Just remember that the gut damage is reversible and you will start to feel better pretty soon after you are confirmed and given the green light.

Perhaps talk to your GP or the specialist's office to see if they can give you a glute-ntake level that will yield good results yet may be less than you are taking in now. Might not make a difference in how you feel, but may be worth asking about.

[Lagoonablue]

Thanks. That's just the NHS for you! Great cos it's free but very overwhelmed. Will just have to wait it out and hope for the best ,