Celiac Diagnosis

[3kidsareenough]

Hi Folks,

Just wanted some advice I think. Been having a lot of abdominal problems since March (well on & off for the last 2 years when I think about it) Initially told they thought it was my gallbladder along with acid reflux but all scans tests came back clear finally after another few months of complete agony & basically living in the toilet after eating the dr did blood test for Celiac disease and yesterday she confirmed that it has come back positive for it. Was told to continue on eating gluten & wheat as I have more tests to get done and another blood test but just a bit scared I suppose what's ahead. Although I am looking forward to actually being pain free eventually.

Would really appreciate any advice. TIA

Hi @3kidsareenough I was a late diagnosed coeliac so hope I can reassure you

I had horrific reflux, within 5 days on a GF diet it was gone and has never returned. Be aware that in the first week going gluten free you may feel worse but then will feel much better, I was as sick as a dog from day 4-7 then the brain fog, pain etc lifted

After diagnosis you will get a dietitian to support you, contact coeliac uk they’re great for an early handhold

Some supermarkets Asda, Morrison’s definitely have made a commitment to make the price of certain basic gf foods the same as normal foods so for example a bag of pasta used to be about £1.50 but is now pegged at 45-50p bread can be up to £3.50 for a loaf but their own brand ones are just over £1 like wise cereal

It’s daunting at first but in time you’ll not really think about it and the health benefits will be obvious just please please listen to the specialist and don’t cheat on the diet as it’s hidden damage can be severe

Thanks Tomnooktoldmeto that is reassuring to hear. The reflux is total agony it awakens me from sleep and is awful so the thought that I can get rid of that (without being on a tablet) is a total relief. The diet does scare me I have to say. At a point last year I had done a few months of the 800 diet which is very much a plant based thing and I felt the best I'd felt in a long time. I had cut out I suppose a lot of gluten foods without really thinking about it but of course fell back into old ways again after Xmas and now this. I am really looking forward to feeling better and not exhausted with loads of brain fog (Drs kept telling me it was Menopause ) good to know that I could possibly feel worse before feeling better too.

You’ll get used to eating gluten-free. Daunting at first, but becomes second nature. Hidden gluten (stock etc) and cross contamination will be the long term issues.

But you end up being happy to eat GF, as it means no more pain, and your body feels healthier.

My 14 yr old DD was diagnosed with coeliac 18 months ago. Since going gluten free her life has changed. It took some getting used to. Bigger budget for shopping (better brands give better texture) not being able to eat all her lovely treats she enjoyed and learning all about other things she can't eat (malt and barley was a surprise)
But you find alternatives!
If you live with other people, invest in your own toaster, own fryer or a double fryer.
You will need to buy your own butter, cross contamination no matter how small can cause problems, if you don't get symptoms.
But, my daughter can sleep through the night now without pains, no diarrhoea, no brain fog or extreme tiredness! Also a positive for my household, her passing wind does not make you want to vomit!
She is now used to it, as you will get used to it too. It will become second nature.
There are some good apps to scan your food to tell you if it is gluten friendly. Mamy social media pages for support.
My daughters biggest gripe is takeaways. She always enjoyed a chippy dinner. She hasn't had one as many places don't do GF (they are starting to pop up now)

My DD caved once! She had a bite of something not GF. 3 hours later she was on the floor in agony. She said it just wasn't worth it and is happy with the diet she has. She now has new favourite biscuits which she now gets excited for. The first time she ate them she cried as the texture was 'sandy' but you do get used to it and eventually enjoy it.

As PP has said. Do not cheat.

Be aware whilst shopping that some goods in gf aisles are naturally gf, you'll just pay more (baking powder, some tortilla chips)
It's a pain at first (I was diagnosed at 32), but so many supermarkets have a broad range of gf products now. Adapting recipes is the next challenge!

Yes we’re lucky that we have 2 reasonably close chip shops that do gluten free once a week

We’re actually a coeliac family, after I was diagnosed so we’re my DD and DS, DH bless him eats gf to protect us in the house as we’re severely affected so cross contamination is a big risk

Just to throw a few extras in we’re all vegetarian, DS has an anaphylactic shellfish allergy, I have a nut and celery allergy and both of us are oat sensitive

I cook and bake a lot from scratch but have had to change my usual stock cubes etc now I’ve developed the celery allergy

On the positives, Dominos do GF, I’ve never been glutened by them, McDonald’s fries and some other items are GF, I believe some Nando’s are so you can get out and about it just takes planning