False positive?

[IAmGrootGrootGroot]

Is it possible to have a false positive ttg?
I've been tested for coeliac disease and it's come back highly likely according to my dr. I'm now awaiting to have a tube put down my throat 🤢 what are the odds of the endoscopy coming back negative after a positive blood test?

IMO it's pretty unlikely as it's a test for antibodies specific to CD. The endoscopy will be the definitive diagnosis.

If you're worrying about going gluten free, don't. You'll be fine, there are plenty of good substitutes out there. There will be an adjustment period and eating out will be a challenge, but you'll be fine.

I was diagnosed in 2004.

Thanks very much @AcrossthePond55

I am quite worried about going gluten free... even having a look through my shopping today, everything seems to have gluten in it! It's going to take some adjustment.
I'm also worrying about my children possibly being coeliac.
I understand it can be hereditary?
My one DC is quite underweight and practically lives on pasta and shreddies (exaggerating, but not by much)

Also terrified of having this endoscopy done... it sounds horrible and I'm very squeamish!
Why do I need to have it done if the blood test is positive?!
(I understand it's to check the extent of damage to the intestine, I'm just feeling sorry for myself )

I guess I was hoping someone would say their endoscopy came back negative even after a positive blood test, even though I know deep down it's quite unlikely.

Plus we absolutely love eating out, it's one of our few pleasures... I guess that would be off the table?
How on earth is it possible to be sure there's no cross contamination risk?

Oh and I'll miss toast... hot buttery toast 😢
I don't even eat it that often but knowing I'll possibly not be able to have it again is quite emotional..

I'm not going to say it isn't a major change. It is. But it is a change that is doable, and after a bit it just becomes routine. Grocery shopping will be a challenge at first, reading labels and finding substitutes or 'new favourites'. But you'll get used to it. One thing I will suggest is that you cook gluten free for the whole family. Don't try to cook separate versions of dishes, it will be a nightmare. You'll probably find that you can do it easily with a few substitutions and 'tweaks' and they won't notice the difference. I do have gluten bread/rolls/buns and biscuits for the family, but pasta, noodles, gravies etc are strictly GF.

Yes, it's hereditary. IIRC it's a 1 in 10 chance that a child will have it if a parent or sibling does. I have two sons and my DS2 has had genetic testing done that shows that he is a carrier but is unlikely to develop Coeliac himself. DS1 refused testing. Both of them feel it's no big deal if they do develop CD.

I'm in the US, so brands will be different, but there are very good GF breads. I have toast dripping with butter every morning for breakfast. It will be a matter of researching reviews and trying them out to see which you like best.

Eating out can be done, but it is tricky I won't lie. You'll soon find the 'safe' places in your area. Where I live luckily there are a lot of restaurants offering GF dishes and a little questioning will quickly tell me if they practice good and safe prep for allergies. Again, with time and experience you'll do it easily.

I assume you're in the UK. Check out www.coeliac.org.uk/home/

There may be a local chapter in your area that has meetings. And there are websites and forums around, too.

As far as the endoscopy, I've had three and theywere a breeze. Two were done under sedated sleep which is pretty routine here. An IV, count backwards from 10 and 'nighty-night' before you get to 6. Wake up and they're all done. Decades ago I was just heavily sedated but even so it wasn't traumatic, I was too 'zoned out' to care what they were doing. You'll be fine either way. As far as the test itself, it's not just the extent of the damage, but Coeliac damages your intestines in a certain way, it has a certain appearance, and that's what gives the definitive diagnosis.

I'm not going to say there aren't times where it's frustrating or I feel sad or angry about the changes and challenges, but then I realize I'm here and healthy. It's not cancer, it's not diabetes, it's not fatal or debilitating. We won't die from it. But for now, just eat what you want. When I was being diagnosed they told me to load up on pasta, etc to get the best endoscopy results, although I don't know if that's still what they advise.

Feel free to PM me if you get a positive endoscopy and you need some sympathy or advice.

Thank you so much @AcrossthePond55 for your informative post, it's incredibly helpful.

You're right, and I'm SO grateful it's nothing 'serious' as such. It's just an adjustment isn't it? But to be honest, having a good look at my diet will probably do me the world of good.

I'm glad I may possibly get to the root of what has been making me feel so awful. I've had symptoms for about 15 years but it's only the past couple of years I've found it even more debilitating.
I'd never heard of coeliac disease until fairly recently. It all makes sense when I put my symptoms together.

The advice is the same, to not remove gluten before the endoscopy so at least I can eat a few more of my favourites before I get a definitive diagnosis. I'm still feeling a bit nauseous at the thought of the endoscopy but thank you for reassuring me it's not as bad as I'm thinking 

Hi there, I had a blood test and it came back as positive for Coeliac (79 something when apparently the normal range is 0-14). I then had an endoscopy but the doctor said that wasn’t conclusive. He asked if I had actively been avoiding gluten before the endoscopy. I hadn’t but I’d been on a diet (to lose weight) at the time so not eating as much bread etc. I since did a gluten challenge and then had another blood test which came back at 15. Ie very borderline for coeliac. I am now pregnant however so the doctor doesn’t want to do another endoscopy while I am pregnant. He has advised me to have a gluten free diet until after the baby is born and then we will revisit gluten challenge.

With regards eating gluten free, it’s still very early days for me. I suppose I’m still in the phase where I am getting used to it. I went out to a kids party yesterday and was peckish but hadn’t taken any snacks and obviously couldn’t eat any of the biscuits /pizza/ sandwiches that were being passed around. I went out last night to a pizza restaurant and had a GF pizza that was ok, but nowhere near as nice as normal pizza. I also only had one desert choice (ice cream) and even salad I was told the house dressing has gluten in. Today I went out for breakfast and had my first taste of gluten free toast which tasted like cardboard.

I’m sure in time I’ll get used to this and perhaps taking your own snacks, dressing etc out is the trick.

On a positive note there is plenty of stuff you CAN eat like rice, potatoes, meat, fish, cheese etc and I also tried a Genus gluten free brioche bun with a burger the other day and it tasted fine.

Good luck OP.

Sorry I would also add that I thought the endoscopy was absolutely awful- I wasn’t sedated- maybe that’s the trick! However at least it only lasted a few minutes.

Besides Coeliac, there is another condition that is gaining recognition. In the US it's call Non-specific gluten sensitivity/intolerance (NSGS or NSGI). It's basically for people whose tests are inconclusive but just plain feel better going GF.

@FinallyGotAnIPhone Yes, you'll get used to it and it will get easier. It just takes time and lots of taste-testing. For a while, try not leaving the house without a snack, there are a lot of pre-packaged biscuits or crackers to tuck in your purse or car. And eat before you go to a party. Unless an occasion is being given by one of my more conscientious friends, I assume that I won't be able to eat anything when I go to someone's home. And don't be afraid to ask ahead of time what's being served. On the plus side, most of my true friends (God bless them!) make sure that I'll have good food when I visit them. My sons are both accomplished GF cooks now, DS1 has actually made GF pasta from scratch! And he and lovely DiL had a whole layer of their wedding cake made GF, just for me.

Another good thing to remember is that the farther away you get from gluten foods, the better GF substitutes taste. But honestly for me it wasn't so much taste as texture. I haven't had a gluten food in close to 15 years. The GF versions I use taste a 'feel' great to me. DS2 actually likes the 'feel' of GF cake better than gluten cake.

I'm in the US and cook a completely GF Thanksgiving. Including stuffing, gravy, and pies. No one has ever been able to tell the difference.

You'll both be OK, I bet you a huge piece of my GF macadamia nut pie you will!

I had the biopsy in June, declining sedation.

It wasn't very pleasant, but it only took 10 minutes. Although obviously not the same procedure, I'd put it at about the same unpleasantness as having a filling at the dentist. The main problem I had was suppressing my gag reflex. They numbed my throat with a spray and it took them two goes to get the tube in. Generally it was uncomfortable rather than painful, although there was a little pain when they did the internal snipping of the biopsy samples.

Going GF -- well, you get used to it. It is, as others have said, a question of reading labels and menus. It's annoying when you go to the cafeteria at work and there's only one GF choice whether you like it or not, a restaurant where only 1 in 5 of the offerings are safe.

Hi. I was diagnosed in 2012 after my iron levels plummeted. My blood test came back positive. I then had the endoscopy without sedation and as long as you concentrate on your breathing (easy said then done, I know) you will be ok. I would have it done again tomorrow if I had to. The Dr who performed it said it didn't "look" like I had coeliac but it came back as positive a few weeks later. It was a massive change and I lost about a stone in weight (I was overweight) in my first 6 months because I was so worried about eating the wrong thing. I got the hang of it and the shops started to fill up with gluten free alternatives, which is great and a lot better then it use to be. Eating out is a bit of a pain, especially when it's with a lot of people because it all has to cater around you.

Good luck with your endoscopy.

DS2 is coeliac, diagnosed at 2 which was easier in terms of not missing things he was used to having.

I have gluten bread/cereals for me, but pretty much everything else is GF in the house: pasta, flour, gravy.

It does take a while to get your head round going gf at first, but then it becomes second nature.

Once you've got your diagnosis join the coeliac society and you'll get access to an app that lets you look up what's GF and what's not - even scanning items in the supermarket (labels are t always the easiest thing to confirm ingredients). Get sample breads from different companies that do gf. You may be able to get some basics on prescription. It's trial and error to find which bread products you find the most bearable.

Eating out needn't be out of the question. Partly depends on how sensitive you are once on a gf diet. DS2 probably gets the odd crumb accidentally but doesn't have symptoms if glutened.

Indian can be ok if they use gram flour.
I've got a Chinese takeaway where you can request gf soy sauce is used to make meals gf. There's a lot of pizza places that now do gf.

Holidays can be tricky, but lots of research beforehand to find shops/restaurants in the area that cater for gf.

Wine and vodka is gf even if beer isn't (except for gf brands - can't comment on those as DS2 is only 16)

Just think about how much better you'll feel once your on a gf diet and that restricting certain ingredients from your diet is preferable to eg having to take medication for the rest of your life

Think for coeliac, false negatives are far more likely than false positives.

Whilst it's not the worst thing in the world. It's totally ruined travelling and holidaying for me now as it requires so much preparation and research if I'm going to be able to eat.

At home it doesn't bother me so much, we don't' eat a lot of processed food so it's fairly easy to avoid. I rarely bother with gluten free bread.

Thank you all for your helpful responses.
I'm getting myself geared up and ready to change, should I get a definitive diagnosis.
I've eaten a lot of food containing gluten today and I feel awful.
I've been sitting with a hot water bottle for hours to ease the pain, chewed on many gaviscons and been to the toilet more times than I care to admit.

I can't continue like this. As much as I don't want to be coeliac, part of me is hoping it comes back positive just so I've got a starting point to begin feeling better.

Does anyone know if they offer sedation for an endoscopy in the uk? I'm really not liking the sound of it... I have a terrible gag reflex. I can't see it going well.

Also, did anyone have skin issues before being diagnosed? I've had terrible acne for a few years now, having previously had very clear skin. Did going GF help with it at all?

Traveling is harder, soul! I'm lucky in that I love Disney and they are second to none in catering for allergies/intolerances (at least in the US). Our National Parks are also great (we RV) and gluten awareness is pretty widespread in the US, as long as you aren't in the middle of nowhere..

I haven't ventured overseas since I was DX'd, but that's due to budget. I wouldn't be afraid to come to the UK, but I admit I don't know if I would travel to a country where there was a language barrier. I would really be afraid of being glutened due to not being able to communicate.

Yes, Groot I did. There is a form of Coeliac called Dermatitis Herpetiformis that causes painful blisters and that was my first 'clue' there was something wrong. I don't know about acne, I never experienced it.

They do offer sedation for endoscopy.

Before I had mine, I talked to a female colleague who has had three endoscopies, though as far as I know none were for suspected coeliac. She told me that it would be fine without sedation and that after her procedure she was sitting in the recovery room drinking tea surrounded by unconscious fellow patients, and she was able to drive home. As I said before, it was unpleasant while it lasted but it didn't last long.

One of my reasons for declining sedation was that I had had a sedated investigation some years previously (which was for IBS where they totally failed to find my coeliacs) going in from both ends and the sedation they gave me wiped me out for the rest of that day and a fair bit of the next. That was, though, done privately as I had cover from the job I was then doing, and I do wonder whether they used a very big dose!

Hi - there is loads of info on the Coeliac UK website about testing. You might have already found this already but here are a couple of links:

www.coeliac.org.uk/coeliac-disease/getting-diagnosed/gut-biopsy/
www.coeliac.org.uk/coeliac-disease/getting-diagnosed/importance-of-medical-diagnosis/

Link about Dermititis herpetiformis
www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/dermatitis-herpetiformis/

And info on the barcode scanner app
www.coeliac.org.uk/gluten-free-diet-and-lifestyle/gluten-free-food-checker-app/

And restaurants that the charity has accredited
www.coeliac.org.uk/food-industry-professionals/caterers-and-restaurateurs/accrediting-your-business/accreditation-who-were-working-with/

Good luck with the endoscopy, may be worth calling the hospital first to check if they offer sedation or just the throat spray and you can then let them know which you want to do.

Thanks all again for your helpful replies!
Thank you @CoeliacK for the links, I'll check them out in a mo.

I've been booked in at the hospital for early January (quite a wait!)
Does anyone know if the endoscopy will be performed there and then or will that be just a consultation?
I must admit, I'll be abit peeved if it's just for a chat, I'm already feeling fed up at the thought of putting up with this for the next couple of months, never mind if I'll have to wait even longer...

I've just had a telephone consultation with my dr to discuss bloods (pretty much 30 seconds worth)
The receptionist told me the dr had wrote in my notes that coeliac blood test had come back as 'strongly indicating coeliac disease'

However, he has just told me that the blood tests only 'suggest' I could have it, and there's still a good chance I won't.
So is he downplaying it or is there a decent chance the endoscopy will come back negative?

I know none of you can tell me outright.. I'm just a bit confused now 🤔

Oh that is all rather confusing...Why not give Coeliac UK's helpline a call Tel 0333 332 2033 and they will have experts who will be able to chat things over with you and hopefully provide a bit more info.

Have you had the endoscopy yet or still waiting on it? if still waiting to have it make sure you keep eating gluten right up until you have it.

Thanks @CoeliacK
It is a bit confusing isn't it?

I haven't had the endoscopy yet, my appointment is the beginning of January.
In all honesty, I'm tempted to not have it done.
I'm really not looking forward to it. Tbh, I'm don't want to go through the anxiety of it all just to have it come back negative. If that makes sense.

Thanks for the number, I may give them a call later

Oh it is frustrating and worrying - I would give Coeliac UK a call so you can chat things over and they can explain why it is important to have the endoscopy and hopefully help alleviated some of your concerns..

Good luck and do hope all goes well

Thank you @CoeliacK I appreciate you spending the time to reply 😊

You are Welcome!

Also hoping it all goes well. I got diagnosed 6 years ago now, and I can promise it does get easier for food shopping, dining out and travelling. You can get cards explaining what you need in many different languages, and some countries are absolutely brilliant for coeliac travel: Italy and Spain come to mind.