Coeliac food

Doglover2

I've had coeliac disease for thirty years, I've suffered massively over that time, and things came to a head just over two years ago when I could no longer stand the 24-7 pain and nausea,really odd symptoms, before this I'd vague symptoms that my gp totally ignored and refused to believe how much I suffered. Years of constant mouth ulcers, which can be part of CD,Anyway, another GP referred me to a consultant who done a scope test,took biopsies, bloods ,xrays,then later a scan,discovered yes as well as my ibs,relux disease,I had Coeliac disease and NAFLD, so I've to buy Gluten free foods ,which I have been doing ,yuck, but they are wildly expensive ,I dont eat much In the way of junk food but I did get some GF biscuits, omg they were foul. Anyhoo,I've lost 2stone to try to help with the NAFLD, I was v low on b12 and Iron too which my consultant sorted for me ,what i want to ask is how the heck are we meant to maintain a diet thats meant to help a condition for life on such low incomes. What does anyone do? Any info welcome.

My consultant is also coeliac and had great sympathy and understood exactly how I've been feeling.

JennieWren

you should be able to get some flour etc on prescription. My neighbour is severely coeliac and gets the flour and makes her own bread and treats. Her cakes are lovely and us non coeliacs eat them happily. I think she joined a coeliac support group which is where she gets recipes. She admits some are good and others not, just a case of trial and testing.

Doglover2

@JennieWren

My GP dosent care how severe i am, she probably wouldn't give me anything on script,also getting an appointment is as rare as hens teeth , My consultant might send her a letter to comply having said that, also I cant use the cooker due to memory problems and fatigue so.i fall asleep and leave it on. But thank you.

Santosha12

https://forum.scope.org.uk/discussion/137531/coeliac-food

Hi @Doglover2, I was misdiagnosed with coeliac disease in 2023; spent loads on GF food (which I hated the taste/texture/cost). I was on it for c 4 months. I tried to get it on prescription but that's not available where I live so I understand completely, I cannot use oven (9 burns). I'm not suggesting you've been misdiagnosed, not at all, just additional information really.

My consultant has written to GP with her instructions/request for various (expensive) medication some of which I've now got, some I'm fighting for!🙄.

I have genuinely lost count of how many 'intestinal' diagnoses I now have, there's at least five.

I'm guessing your CD diagnosis resulted from a gastroscopy as you mentioned you've had the 'scope. Mine was diagnosed from an MRI small bowel study I had, revealing damage and much less villi than there should be, so less area for absorption, but this is not the Gold Standard for diagnosis, as a Gastroscopy is (sorry if I'm saying what you already know!).

You weren't asking about diagnosis so please excuse me and feel free to ignore the following but in case any of it helps...

I was also diagnosed with IBS. That's the diagnosis given when all other tests are exhausted. I don't believe I have IBS.

Depending IF you still have symptoms (I'm not being nosey/asking what they are 🫠) you might want to consider asking for a faecal calprotectin which tests the level of inflammation in the bowel.

Separately, a faecal elastin test that shows the level of pancreatic enzymes in the stool. I was diagnosed with Exocrine Pancreatic Insufficiency recently, 90% failure of pancreas and which resulted in malabsorption and malnutrition where barely any micro or macro nutrients were being digested or absorbed, including much-needed vitamins. This resulted in many other health conditions due to misdiagnosis for c 4 years all as a result of a lazya***itis consultant and GP. Thank goodness I pushed continually for a third opinion. My consultant gastroenterologist has been amazing and is all over it so to speak 😅.

I also had the seHcat scan and tentative diagnosis of bile acid malabsorption but I stopped the medication for that due to intolerable side effects so currently, the jury's still out whether that's a factor or not.

I hope you are in an area where you might be able to get prescriptions but I understand baking bread might not be a safe option. I have a little separate oven thing on the top of work surface with a timer like a microwave has but rarely use it and have to stay with it as things seem to burn so not ideal (although the phrase 'a bad workman always blames their tools ' comes to mind ha ha).

I was also a member of the IBS Network they've sadly closed at the end of July due to lack of funding but the support threads still continue under the umbrella of the 'Health Unlocked' website (I think it might be 'Guts UK' that have taken over that). You might get relevant information their too regarding coeliac disease/costs etc.

I wish you well and my very warmest wishes to you.

helenjclayton

I’ve been coeliac for 35 years. Depending on where you live not many get prescriptions. I find marks and Spencer’s good! May sound surprising but I think their bread is the best. All of their sausages are gluten free. Aldi now sell pasta and a few biscuits. That’s all you need to buy. Gravy I use Bisto Best. Most beans are gf. All vegetables and fruit. Yoghurt is ok. Rice if gf You will get on ok !

Doglover2

@Santosha12 Yeah,I definitely have it,i suffered terribly before I was listened to. The GF foods made a difference for sure.

My gastro consultant has been fantastic too as a sufferer himself he fully "Gets it"

Yes I had the gastric scope done twice.

I find the ibs horrible ive had that for 40 odd years.

Ive had the fecal tests done too. Ive had gut biopsies taken all of which pointed to coeliac disease and inflammation. I was a member of a few online forums for ibs and reflux disease. But I'm always too exhausted to keep up with much.I've a host of other conditions including two heart problems.

Thank you for the info.

Doglover2

@helenjclayton I live on fruit and veg... I'm vegan.

I'm doing OK, but I just wondered if there was anything else I've missed.

I dont like pasta, so that's out.

I've discovered gravy that's both gf and vegan, so that's a winner.

Ive hated the biscuits ive bought so far and the sugar content in some was ridiculous.

I will def see if M&S have the bread, ive had a few hit and misses with bread , found some nice stuff in lidl and Home bargains.

Thanks for the info.

Santosha12

Oh you're welcome Doglover2. It's half the battle getting a confirmed diagnosis! An ex colleague/nurse was eventually diagnosed with Crohns after 7 years which sadly isn't untypical!

I can never keep up with the forums but partly because my diagnoses have been coming thick and fast in the last year or so so it's a constant battle keeping up with that and on top of them 😬🙄😊.

Doglover2

@Santosha12 I've now got 14 conditions. Most of which are decades or lifelong. I'll be 59 soon and I can hardly believe ive made it this far. 😂

MY cousin has Crohns and almost died from it,hes doing so much better now but it took a few years to get him to this point.

If my gp had taken me seriously when I was doubled in two with pain and nausea they'd have found the Problem long ago, but she really is a strange one ,I wouldn't do it but apparently there's been numerous complaints against her. Anyway, I'm on the right track as of two years ago. I'm being extra careful in all I eat. Thank you again. Best wishes.

Santosha12

https://forum.scope.org.uk/discussion/comment/1057380#Comment_1057380

Oh I'm SO glad you (and your cousin) are doing well now and I meant to say, so glad that you've got a good consultant. I honesty know the angst, pain and turmoil that goes with not being listened to, especially for so long as you have. I've 'only' battled since I got ill after Covid infection in Nov 2020.

Had I been listened to and tested/treated, I might have been in a position to get back to work, now, at 62, there's no chance. Their loss (NHS).

I've another battle today with GP over medications requested by consultant.

Just had call in between trying to write this - a brilliant GP, sorting extra medication, calcium D, multi vitamins and increased CREON for EPI, xrays of feet, one looks like could be fractured again, Dexa scan and bloods. So battle over, live to fight another day but the support makes a massive/ huge difference.

Very warmest wishes!

Doglover2

@Santosha12 I have migraine with aura since I was 13,but these past 18mths my headaches been constant, I call these in-between headaches as they aren't migraine. So debilitating.

I had Covid at the start too for 6 weeks thought id die. My friend on the phone,as we didnt know what it was at first, I wouldn't let anybody in to the house, said she never heard me sound so bad. Its horrific.

Oh def their loss re NHS. Well. Your time now to get yourself well and not worry about work. I can barely function a lot of days and every day there's something rearing its ugly head.

Good luck to you.

Doglover2

@Santosha12 I just wrote you a huge reply, and now it's gone. 🙄

Dunno what i did. Anyway, good luck for today.

Def the NHS loss that they didn't help you to return. Still, this is your time, and as you're so unwell its impossible to return now as you say. You take care. Nice chatting to you. X

Rosie_Scope

Hi @Doglover2, your reply may have been stuck in our filter, is it showing up now? Nothing you've done wrong, it's just a bit sensitive sometimes.

I feel your pain on the expense of GF foods! I keep an eye on the reduced sections in the supermarket in case there's bits and pieces in there that I can pop in the freezer.

But I've mostly just changed my diet away from bread-based meals and instead have two cooked meals a day with rice, potatoes or other carbs to make up for the lack of bread. It can get exhausting finding things that are quick and easy, but any time I cook I try to make at least double portions to keep some meals in the freezer ready to go. That's worked out as the cheapest way for me anyway ☺️

Doglover2

@Rosie_Scope Thank you. Yes it is showing now , I thought I was doing something wrong there .😆

My Fatigue is a terrible factor in my life, but I'm trying to eat as healthy as I can. I feel a bit better for my b12 and iron supplements my consultant kindly gave me. And the weight loss has helped somewhat.

So things are starting to fall into place, if only I can say the same for all my other ailments and disabilities. 😬

Thank You again. X