Coeliacs... what were your experiences when first going GF?

[LuckyDiamond]

I was tested due to excessive bloating and have come back positive. I’ve yet to have my (non emergency) appt to go in and chat about it/book further tests.

I’ve been GF for a week and was amazed in Prezzo last week when I had absolutely no bloat after a large bowl of gf pasta ariabatta. I seem to have lost 3lbs too. Will this continue?

Not me but my husband who was diagnosed last year.
I think the first thing was the cost of things bread is a nightmare and pretty grim.
Eating out is easier than expected but lunchtimes are hard.
He seems to have got a lot more sensitive in last year and has immediate dizzy spells if accidentally eats gluten or there's cross contamination

Hello! Just see this as all good news. All the women in my family are Coeliacs so it is very normal in our houses and if you live in the UK then there is almost nothing you will miss out on. You will lose your bloat and many people find that they lose about 7 lbs over time and strange things like aches and pains that they always had just disappear. Do be careful not to eat too many replacement type foods that are both expensive and high sugar and fat. Rice is your friend. Be really aware that after a few months being Gluten Free you will be more sensitive to any gluten than you are now. You must be so careful also with cross contamination from bread boards/toasters and in restaurants. Prepare yourself to explain a thousand times that it is not an allergy but an auto-immune disease etc etc. Join Coeliac UK and use their app, and for holidays get the Coeliac UK language cards. I live overseas and have been a Coeliac (along with my now 6 year old daughter) in 3 countries as an expat. Some are very hard and others easy. Message me anytime if you need any help.

Thanks for all that info So far I’ve had none, though I can google.

I had a look at the GF section of the supermarket yesterday...£3 for a half loaf! I’m going to avoid rather than replace.

I prefer rice to pasta and would happily eat it with a pasta sauce. If restaurants are doing a gf alternative for no extra cost I can enjoy it then.

Have you had your biopsy yet? If not you should not be going GF yet as this will affect the result of the biopsy. You need to continue to eat gluten for the Coeliac Disease to show up in the biopsy results.
www.coeliac.org.uk/coeliac-disease/getting-diagnosed/

Definitely avoid all the free from alternatives not only are the free from gluten but eggs milk and taste quit often. Fresh is best. Be ruthless reading labels lots of “normal “ things are gf but just don’t shout about it. Watch out for burgers and sausages as they can be stuffed with flour to bind them.
But I agree if you’ve not had your biopsy yet then don’t stop eating or it will give you a False response.

Bread was a nightmare for us in the beginning, my teen daughter and my husband are both coeliac.
We're not UK based and our GF choices are about 1/10 of what I've seen in the UK/US supermarket, needless to say when we're in the UK with the car it becomes very exciting going into Tesco/Asda !. I buy all my baking stuff online. I have also become a label reading Ninja, gluten is very well hidden sometimes ! !
I cook fresh daily, family meals are GF except for pasta, then I'll make normal pasta for my two sons and I and GF pasta for the Gluten free club. We have a separate cupboard for GF stuff and I'm really careful with food prep, separate chopping boards, no wooden spoons/spatulas !
We also have a bread machine, and I went on mini baking course to learn how to bake GF which was an eyeopener and after some trial and error have developed a good loaf from our machine that they both like, I make one a day as they're small and we cut it for sandwiches and toast in the morning..
It took a bit of adjusting and some organizing, and we very rarely eat out because again where I live is a bit slow on the uptake for GF eating except McDonalds of all places !!

Definitely agree with the keep eating gluten until after you've had the biopsy and your blood results they will both be affected by your gluten intake.
Good luck !

Argh I’ve messed up already

Great tips though

Everyone's correct that you should keep eating gluten until your biopsy. Can I please recommend a few boys to you:Tesco GF pasta is amazingly good and was £1.30 when I was last home-we all eat the same in our house. Look for Helen's Sandwuch bread mix- it's like normal bread and truly soft. Also go to the fresh bread bakery section in Morrisons and they do a fresh GF sourdough and other varieties and it sells quickly. All other plastic wrapped GF bread needs toasting to eat. You may be entitled to prescription help too depending on where you live.

*BUYS not boys!!!!!!!

They don't do biopsies in my area any more. They are also phasing out prescriptions for food stuffs.

Lidl now sell the Warburton gluten free loaf, wraps, thins. Pasta and cereals and digestive biscuits. Really reasonably priced!

Pestymc
No biopsies any more? I can see there are pros and cons to that.
I strongly suspect I have coeliac as does my GP. I am waiting to do the initial blood test and still eating gluten...it has been a hard road for me with lactose intolerance and gastritis for most of the past year. Have had psoriasis and random rashes throughout my life. Stopped eating gluten for several months recently and felt better than I had in years.
Without the biopsy can you have an official diagnosis of coeliac?

Tiddle DD got a diagnosis with an inconclusive blood test and strong family history (My DM was a coeliac in the 70s).

Thanks ! Sorry for thread derailment

Lucky the bloat wears off and then you can put on some proper weight.

DD got down to a BMI of 17 but had a big fat belly, the belly is under control and she is now working towards putting on a few kg in a better distributed way. That starved , spindly limbed look with the big belly is not healthy or desirable.

I was diagnosed after tests for anaemia so never really had bloating symptoms to resolve.

My iron levels improved fairly rapidly after going gluten free.

I never bother with gf pasta, usually substitute with courgette noodles or have bolognese with a jacket potato but was never a big fan of pasta anyway. I buy very little from the free from aisle as a general rule. We never bought much ready made stuff so cooking at home required no big adjustments (plus i'm a skinflint and refuse to pay the prices!).

Eating dinner out has never been a problem, lunch out or in situations where in the past you would grab a sandwich is far more problematic.

The biggest issue I've found is that gf options often tend to be low calorie options too and I struggle to stay the same weight without concerted effort and drinking a lot of milk/lattes!