Would anyone be up for a coeliac chat thread?

[Squirrel125]

Umm...that's it, really! I was thinking a thread for people with coeliac or a coeliac sufferer in the household where we could share recipe ideas and any other questions might be helpful. I did briefly follow something like this on FB but found it a bit intense, as FB groups tend to be!

My DD (12) has coeliac, diagnosed last year. Still getting to grips with some food alternatives but we have quickly found specific favourites (all in different supermarkets, of course!)

So my first question is...any ideas to make GF couscous a bit more flavoursome?!?

Does anyone have a good recipe for a GF white/ cheese sauce? I want to make a lasagne and the last time I attempted a straight replacement of GF flour for plain flour it wasn’t nice. Thanks

I usually use cornflour for sauces

@Twotooto I just use cornflour instead like this one fromthelarder.co.uk/gluten-free-white-sauce/

The secret to making any white sauce nice is lots of cheese and a little freshly grated nutmeg.

Amazing thanks, I will go the cornflour route 😊

Try using creme fraiche (thinned down with milk if necessary), nutmeg and some grated parmesan instead?

Please can I ask what happens when you get glutened? What symptoms do you get, and is there anything that helps you feel better again? Thanks

@OneSmallPieceOfCheese my symptoms are all neuro, so I get a back of head headache up to 12 hours post gluten, a creaky painful neck and a weak feeling leg and sore eyes - wears off after about 48 hours if I drink tons of water - I'm not coeliac though- just NCGS -

Yes! My best guess diagnosis is 'splenic flexure syndrome' - a form of IBS. A colonoscopy found nothing, except that I have a 'redundant' or 'tortuous' colon, i.e. very twisty! So I think things just get a bit stuck or loopy up there, it's quite a sharp bend naturally.

Best thing for me is no gluten, even though I'm not diagnosed coeliac (I quit gluten for something else and was surprised to find it really helped) - it just seems to aggravate and slow down my gut - and to make sure I eat enough fibre, especially soluble, and don't get too backed up - it's much worse when I'm constipated.

But of course, get it checked out medically before listening to some rando on the internet!

@OneSmallPieceOfCheese I occasionally do a 'gluten challenge' to see if I can go back to the lovely bread... I'm fine for about a week, then my gut starts slowing down and cramping and hurting, especially under my left ribs and left pelvis (splenic and sigmoid flexures).

Plus my joints get really sore - especially my sacrum - and, weirdly, my breasts, armpits and clavicle hurt - I guess it's the lymph nodes. I had radiotherapy and a lumpectomy for breast cancer six years ago, and that area REALLY hurts. And my eyes get puffy.

I try to deny it but after a few weeks it gets so miserable that I go back to GF and it takes a few weeks to feel better. My blood tests show no coeliac, so I guess I'm NCGS.

Oh, and to get better I take a laxative (and - TMI - clear my schedule for 24 - 48 hours while the backed-up horror just empties and empties! It's astonishing what the body can hold onto). Drink lots of water, eat plenty of fibre, and hang on in there until I feel better.

@Gruello Can I ask who advised you on the link between thyroid and gluten? Not challenging it, it's just that I have Graves, and have read a lot about the connection between thyroid and coeliac/NCGS, some of it 'internet wellness woo' stuff, but also some medical research papers that point to a link. But I've never got a GP or endocrinologist to confirm this!

I just find it works for me and, like so many people, am not minded to pursue a diagnosis, for all the effort it would take for little reward.

Apparently there is a lot of Italian research on it because the population there has a lot of coeliac - don't know if that's genetic or a diet-based thing... 🤷‍♀️

Thanks for your reply @Crikeyalmighty my daughter is also 'just' NCGS but still gets a very strong reaction to even a tiny bit of gluten. She also gets a headache, as well as gastro symptoms, and I can see it in her skin colour too, she looks awful for a while! Painkillers seem to make little difference, lansoprazole too, and the only option seems to be to drink lots of fluids and wait it out.

I was given the advice by my endocrinologist (private), but previously and this time I have always tested negative but this time my IgA is raised and I’m not absorbing iron or vitamin d. There was a small time after having my children where I didn’t have the associated issues with Gluten and My GP has always said not to restrict but I am now at a point where I’m happy to accept that I can’t eat gluten again.

I’m nearly a week in, totally GF and feel so much better. My BM are normal, not waking up feeling foggy and bloated, puffy eyes have gone and dark circles fading.
My dad also has an UAT and he can eat bread etc.. although when I think about it he probably doesn’t eat much in general.
interesting about there being a large coeliacs population in Italy, I think it’s linked to modern farming practices and genetic manipulation of crops.

My only noticeable symptom is a bit of belly ache, its really really mild for me which means its difficult to notice if I've accidentally consumed any gluten. I'm currently really anaemic which makes me wonder if I'm consuming it somehow, possibly cross contamination at my school lunches, probably should have asked the doctor to check my coeliac markers.

@Natsku I think it's very difficult with school lunches as the food might be GF but the potential for cross contamination via surfaces and utensils must be huge.

@OneSmallPieceOfCheese yep- I do sometimes need to go 2 or 3 times a day too if glutened - and it's smelly!! It's the headaches that I hate most- mine are all at back of head - most odd - I've found nothing really helps except tons of water ! And crapping it out

Yeah there's quite a potential there, though most days almost everything is GF but there's still normal bread which leads to crumbs on the tables. School's over now though so don't need to worry about that any more.

Hi
Can I join?
I am officially undiagnosed as I don't have the markers when tested but I haven't eaten wheat for about 18 years. I have many of the symptoms (some fairly extreme) of Coeliac disease and had many tests over the years including a colonoscopy and most doctors presume its that, test me then rule it out because the test shows negative.

But the last gp I had and a consultant at the hospital said it is more than likely it is CD and I should act accordingly.

Or as a gp said many years ago when I said I had cut gluten out to see if it helped "do you feel your symptoms are bad when eating gluten? And then better or stop when not? Then I suggest you do what your body is telling you"
Made sense to me.

I came to find this thread last week after a terrible reaction (like food poisoning) after accidently eating some dairy which I knew I had an intolerance to but never this bad. And I saw online that secondary lactose intolerance can be a symptom too.

Just to make things more difficult I am also allergic to a few other things, edamame beans and orange/some citrus for instsnce. And then add on that I am vegetarian (was vegan but reintroduced eggs as my diet felt so limited) and it can be difficult to eat well. I actually love food and as my daughter says, if it doesn't make me ill or against my ethics of vegetarian then I am the least fussy person as I will eat anything. Not sure anyone inviting me for dinner or going out to eat feels the same but I think its actually true.

I have a few questions for those who are diagnosed and/or lived with this a long time.

1. are you atopic? Is there a connection? I have asthma, eczema and hayfever and have since childhood (now 53).

And 2 - is there a genetic link to different autoimmune diseases? My half sister has rheumotoid arthritis. Could these two separate autoimmune diseases be a geneticly linked from our shared parent? Just a musing really.

And 3 if this is CD instead of a severe case of IBS where I just avoid the foods that make me feel unwell what do I do differently if anything at all?

It has been interesting to read through from those dealing with this.

And 2 - is there a genetic link to different autoimmune diseases? My half sister has rheumotoid arthritis. Could these two separate autoimmune diseases be a geneticly linked from our shared parent? Just a musing really

Can't answer the others but yes to this, or so i understand. My coeliac dc has juvenile arthritis. They routinely screen for it in kids with arthritis. There are other autoimmune conditions in the family too.

@Breathmiller I believe so too, I had a Steven Johnson’s syndrome reaction to medication when I was 16 that absolutely wiped my immune system. Post this I was diagnosed with IA, will is fairly well managed. 8 years after this on a trip abroad I had severe food poising/tummy bug and it was after the is that my under active thyroid was triggered (mine is clinical not hashimotos).

Yeah in my country they advice screening for other autoimmune conditions, or screening for coeliac disease if diagnosed with certain other autoimmune conditions. I have an underactive thyroid as well as coeliac disease.

Also have asthma and hayfever, though no eczema.

My recipe for cheese sauce is creme fraiche, soft cheese and an egg. It looks like it won't work but it does.

That's not unlike the topping for a moussaka.

Thanks @Squirrel125 @Natsku & @Gruello

All interesting stuff