Is it that serious?

[valita08]

I understand that my body is attacking it self and it causes damage in the small intestine and it gives me all kinds of unpleasant horrible symptoms that i still get .

But , is it going to kill me ? Like MS and other diseases?

Beacuse i'm starting to not take myself seriously.. just like everyone else is not taking celiac that seriously..

like it affects me on a very big level and it changed my entire life but is it going to kill me ? Beacuse it doesn't look uncommon , so many people have it and they're fine ..

i guess i'm just confused and tired ..

i have IBS too and possible MS which sucks but it feels like no one takes celiac seriously.. they treat it like an allergy.. it's like if i don't have cancer then i'm fine ..

But i'm not fine !

Sorry i made this too long .. i'm newly diagnosed and all over the place

[Lisahelen]

It is a big life change. Lots of the things we used to just grab from the shelf now need to be scrutinized to make sure they are safe for us.

Yes it can have very instant dramatic effects for a lot of people but there are others for whom dont have a lot of symptoms but who are suffering in other ways, because left untreaded coeliac can go on to cause a whole myriad of medical problems. Gluten ataxia and the added chance of developing cancers are very real possibilities.

Cant sugar coat it for you, its a very real deal breaker for most of us i would say. My dad had what i firmly believe was gluten ataxia, with a b12deficiency tagged on as well. From seemingly fit and healthy, he deteriorated not only physically but mentally too, he died within two years, but this was before gluten and its effects were known.

It will get easier, not necessarily less frustrating but you will learn to accept the limitations of this disease, not forgetting that by having one auto immune condition it has opened the door for you to be susceptable to others too.

I think its not that other people dont take it seriously, more that because they dont suffer with it, they are ignorant of its consequences. It is still a relatively new disease where the only treatment is to completely remove gluten from your diet and just because a product or food doesnt have gluten in it they think that that makes it ok for us to eat, they dont consider that there could be a cross contamination issue involved, that crumbs from a gluten food could give for some people, a most unwelcome and dramatic toilet visit. For myself, are the severe headaches i get occasionally caused by gluten that i dont know ive had? It is a minefield, and i can sympathise with how you feel, especially as you were symptomless before diagnosis.

[Karen49 in reply to Lisahelen]

Lisahelen, excellent advice as always, thank you.

Adding to that, the issue of cross contamination is huge and great care needs to be taken.

Eating oats labelled GF is still very questionable plus I would advise washing and rinsing rice and pulses thoroughly before use. 'WE' don't know what was grown on that land last year or which factory it passed through or how and where it was stored.

I read the ingredients labels for EVERYTHING before and after eating, and keep labels for comparing if I have an "attack" , plus the advice on processing and handling isn't always printed near the allergy advice (or at all).

Lastly don't get sucked into buying all this so called "Free From " stuff. As far your circumstances allow, cook and eat from fresh ingredients.

[valita08 in reply to Lisahelen]

Thanks for replying but i'm not symptomless , I've has symptoms for 4 years and they kept getting worse .. i went to all kinds of doctors .. did 2 MRI's , a CT , 5 EEG's , i lost count for the ECG's , echocardiogram , a tilt table test , a ton of blood tests and 3 endoscopies and i even went to a psychiatrist.. no one suspected celiac and everyone made me feel crazy until my doctor referred me to another doctor in a different hospital after 4 years of all kinds of medications and when that doctor did an endoscopy and a colonoscopy they found out i have celiac.. it literally caused my grades to drop dramatically and i completely changed and every one made me feel like it was all in my head so i literally want to go to every single doctor and yell at them for making me suffer for so long and treating me like shit in all the ER visits and thank you for understanding i appreciate it

[annenic]

Firstly, we’re all going to die “SOMEDAY”, but it won’t be from Coeliac Disease. It is an auto immune disease and it is a really serious disease but it’s a totally controlable one, that’s in your hands. Secondly, life’s way to share to give a stuff about other people’s opinions, you know it’s a very serious disease and it’s up to you to educate the people in your life who don’t see it as such. Thirdly, never say you can’t have gluten or you're intolerant of gluten people will take that as a “diet thing” always say you have Coeliac Disease that word Disease makes people sit up and take notice. If you have to explain it a 100 times a day then do, eventually they’ll all get it x

[BabsyWabsy in reply to annenic]

Amen to that. I am not celiac, but have wheat intolerance and have been told to my face that it is a fad. Lots of educating to do. It's unfortunate that it is 'fashionable' for some ill informed people to go 'gluten free' believing it is a more healthy diet.

[Hidden]

Hi there, firstly we've all been where you are and it is a shock being diagnosed, however on another level we are lucky that our symptoms can be treated by diet and it opens the opportunity for a very healthy diet based on fresh foods that are naturally gluten free.

You need to reap the benefits of not eating gluten then once you start to feel better its onwards and upwards and bear in mind all coeliac fear being made ill by the dreaded gluten and I fear bread crumbs in others kitchens and this is a natural emotion and to me its the dark side of being a coeliac.

At first take it one day and one meal at a time and look at what you can eat rather than what you have to avoid.

On the HU Healthy eating site we have members who are coeliac, vegans, paleo etc and we often have gluten free recipes so here's a link: (admin of GFG want to keep GFG for health issues so I post recipes on there)

healthunlocked.com/healthye...

And lastly now you've joined us you ask away as you're in good company on here and you want support you've got it 😊

Jerry

[Marz]

At 27 I was in hospital for almost six months having 5 operations for Gut TB - followed by years and years of surgical interventions for Crohns. It was a long struggle working full time with a family and home to run. I am now 71 and was diagnosed with Hashimotos - auto-immune thyroid disease - in 2005 and I am pleased to report that I am now well.

Sometimes seeing others in a more poorly state - as I did in many hospital stays - I am grateful to have survived and recovered well. I am gluten free in an effort to reduce the Thyroid anti-bodies before my body decides something else could be targeted and am pleased to report they are reducing slowly

Even people who are not gluten sensitive or a coeliac can benefit from being gluten free so there are lots of us around trying to eat healthily and avoiding gluten.

Hope you soon feel better - happy to help

[valita08 in reply to Marz]

I hope you feel better soon and thank u

[Marz in reply to valita08]

I'm really well thank you !

[Jacks]

Some brilliant replies so I won't repeat their info.

You asked is it serious - can it kill you? Left untreated (by diet) it can lead to severe anaemias - which could, potentially, leave your heart unable to function normally. Or to refractory coeliac disease and malignancies.

Don't let other people influence your health. Take control.