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Got the news today

Hevlady profile image
12 Replies

Hi everyone,

Got a call from my dr today to say my coeliac screen came back positive. I'm 28 and usually fit and well, so this all very shocking and insane to me! Any tips and hints that anyone can pass on whilst I'm waiting for my gastro appointment? I'd really appreciate it!

Heather

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Hevlady
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12 Replies
Lisahelen profile image
Lisahelen

Hi Heather,

Firstly have you been told to exclude gluten containing foods yet?

Is the appt for endoscopy to see how bad you are inside?

If you answer no to the first question and yes to the second then i suspect you have to just carry on as you were, eating gluten containing foods until after your scope. Then after the procedure many of us go gf in earnest to try begin to limit the damage already done.

You could look at the coeliac website to gain information and join them think its £20+ something per year. They have an app to use on your phone which will go someway to helping you through the first few weeks/months of your new diet. Also have a substantial directory of foodstuffs they send to members.

Your surgery will be able to tell you if you can get prescription breads etc- some areas have stopped this, but if yours is still in then i suggest you get a prepaid certificate either 3 month or annual to help with the cost.

Both juvela and scharr will send out a goodie box of some of their available products if you email them.

Look in your cupboards, fridge, freezer and put to one side all things which contain gluten and try to use and enjoy them whilst you wait for your appt.

If you like toast then you will need a new toaster- yes seriously!😂

Take the time whilst you wait to try and clue yourself up on what you can eat in the near future. Loads of info on the web and also active gluten free and coeliac forums or facebook.

Look at the free from sections of your usual shops to see if it can provide you with an alternative of the type of foods you eat now. You may need to consider shopping online as the range from many supermarkets is bigger. If i remember rightly ocado do nearly 2000 gf products.

Lots of things that most of us eat are naturally gf its just a bit of effort to make sure that there hasnt been a change in ingredients/contents. Most straight forward currys are gf but not naan and sometimes bombay potatoes or bahjis. Sometimes the cheaper own branded goods are gf -(Tesco cheap cuppa soup but not better brands) and as you will find sometimes because it has gluten free on the label the price is hiked. You need to go label looking!

Many of us complain about eating out where the risk of cross contamination is the biggest issue. This seems to affect us more as we progress down the line of healing because we have been strict with ourselves but cant guarantee an outside source is as controlled. I normally take a couple of slices of bread with me just to be sure i get some, and just ask for some butter. Look at the restaurants and cafes where you would normally go to see if they do a gluten free menu, if not then you will have to hunt further afield or take your own food. If you like a drink you might need to rethink that too! No lager or beer unless gf, cider is ok, spirits too. Beware of fruit drinks especially cloudy ones as they can contain wheat.

I know it seems a huge minefield that you have just stepped into but trust me it will become easy with time- frustrating too as you will probably have something that you really love that you can no longer have. Ive found the best way is to look at it that its keeping you healthy and mending the damage to your insides. I am a silent coeliac who ate 'good' foods prior to my diagnosis a year ago so i know that todays phone call probably seems like a very daunting future for you. We are here to help and support you as are the other groups dedicated to coeliac.

I hope this has helped you just a little bit.

Hevlady profile image
Hevlady in reply to Lisahelen

Thank you this is so helpful! I'm starting to find it very daunting!!

judburke profile image
judburke in reply to Hevlady

It is overwhelming at first but you will get through it. It is a learning curve but it must be done. I was shocked when I found out I have CD as I didn't have noticeable symptoms - I just didn't feel right.

My top tip for you is if you are told to go gluten free you must do it 100%. Put it in your mind that it is poison for you. The smallest bit of gluten will harm your health so don't be tempted. Eventually it will feel normal.

Hevlady profile image
Hevlady in reply to judburke

Thank you!

Penel profile image
Penel

Have a read of Coeliac UK website. It's a big change of life-style, just take one day at a time and get all the information that you can.

coeliac.org.uk/home/

Hevlady profile image
Hevlady in reply to Penel

Thanks I will have a look! Xx

Hi Lisahelen,

On a positive note your test may have started a diagnosis that will conclude gluten is harming you. By stopping eating it your body will slowly repair itself and hopefully you'll live to a ripe old age.

The silver lining that I discovered was that I had to become more knowledgable about what I put into my body and as a result I am now on a much healthier diet than before (biscuits were my downfall!). It's also a lot easier now to source GF food, mainly as a result in the non coeliac demand for GF food.

So there's a lot to be thankful for in my opinion and I am pleased that coeliac disease (I do hate that description though!) has been the catyalist to a more healthy lifestyle.

On a more practical point you may want to consider making your own bread. My GF homemade loaves get the thumbs up from the rest of my family and friends.

Best of luck with the gastro appt.

Peter

Hevlady profile image
Hevlady in reply to SilverDreamMachine

Thanks Peter! Biscuits are my downfall, they're so easily available at work!! But thanks for the advice!!

JennSp profile image
JennSp in reply to Hevlady

Biscuits are still mine, don't have a cup of tea without one...but never have a biscuit with a cup of tea either, so at least I don't snack them in between cups of tea!!! Take care

JennSp profile image
JennSp in reply to JennSp

that should have read but never have a biscuit WITHOUT a cup of tea either sorry folks....

JennSp profile image
JennSp

Hi Don't worry too much about being Coeliac, ins a condition controlled by your food intake, no tabs to take and you will still be fit and healthy thru it all...As it has been said DONT stop eating Gluten until after your Scope apt, and you may be told that day to stop eating it if the Doctor can see for himself the damage in your guts....Now Coeliac UK ask for a membership fee, when I was newly diagnosed it was free...but if you're at all on a low income then I would phone them and have a word after you are diagnosed...£12 for concession rates this year....

Ruthi profile image
Ruthi

Like every big change it looks daunting, but once you are a few months down the line it will be second nature. Read every label and you will be fine.

I now eat no grains at all because I realised they all have me heartburn. That takes a bit more planning but I've survived all sorts including safari holidays and camping!

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