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Anyone From Se England?

wolfee

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wolfee Newbie
wolfee
Posted

Hi cant seem to find a Uk forum for celiacs and this one is so good I wondered if there was anyone from the South UK who would like to chat?

  • 3 weeks later...
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Janiney Rookie
Janiney
Posted

Hi!

I live in St Austell in Cornwall. Been having symptoms since the age of 17, I'm 23 now. FINALLY got a doctor to take me seriously when my symptoms worsened dramatically since having a baby. My daily symptoms include painful stomach cramps, nausea, bloating and gas, indigestion, very itchy rashes, constipation, heartburn, reflux, headaches, moodswings, lack of concentration, muscle and bone ache, fatigue and weight loss (...to name but a few!) I also became completely intolerent to even a small amount of milk produce.

I had a negative blood test result and was really disheartened, but inspired to push for a biopsy after reading of people with similar symptoms having negative blood tests but postitive biopsies on this site.

Went gluten free for two weeks as an experiment and felt much better, like normal people do! ... I don't really know how normal people feel as I've been ill to varying degrees for nearly 8 years!

I have been eating gluten again for two weeks now in preparation for my endoscopy next Friday. I'm quite nervous, partly because of the proceedure itself and also because I'm worried they'll tell me it's not coeliac and I still wont have the answer I'm looking for!

What's your story? :P

lyonspam Newbie
lyonspam
Posted

Hi

Just logged in to see if there is anyone from England, there doesn't seem to be anything for celiacs in England anywhere!! Where are you all hiding?

I have now, after 23 years of suffering the same symptoms as Janiney, been diagnosed celiac. I had a traumatic pregnancy and it brought on the itchy skin that you describe. I've also always had the fatigue and aching and thought that was normal until I went gluten free and within a couple of weeks realised that normal was not feeling tired all the time and aching every day. Also had the headaches, stomach cramps, constipation and diahorrea, sick feeling with certain foods, oral lichen planus (bit like thrush in your mouth) and the latest is patchy vitiligo (loss of skin pigmentation), heartburn, indigestion and reflux, restless legs syndrome, weak nails and hair. I've had all kinds of treatment and none worked until after having the endoscopy and finding out I have been celiac all this time. The best bit is that they did the test 15 years ago and it came back borderline, they tried me on gluten-free for a few months but because the skin problem didn't get better, they stopped the gluten-free. I'm now told it could take two years for the intestine to recover and the skin problem to right itself but I think, I've had it 23 years so what's another 2?

Since going gluten-free my life has changed for the better, I no longer ache, or suffer restless legs, not tired all the time, I sleep better, my skin is very slowly improving, I don't get indigestion/heartburn, stomach cramps etc are getting fewer. It will take time to get this new way of eating 100% correct but I think - eat that and feel ill or eat correctly and get better, it's no contest.

Hope you are coping ok.

Pambo :)

nikki-uk Enthusiast
nikki-uk
Posted

Hi everyone :)

I live in London and my hubby and son have coeliac disease.

This is a good British based coeliac forum

Open Original Shared Link

....and there's lot's of great info here too :)

KatS Newbie
KatS
Posted

Hey! I'm south east england (At the moment!) too!

My story is... about 4, maybe 5 years ago when I was 16/17, I started having reactions to food... chocolate was giving me heart palpatations and I was suffering severe gastroenteritus after wheat based foods. My dad is a GP, so I pushed for a RAST, which came back mildly positive, confirming I was allergic to wheat. A visit to a specialist lead to me discovering I'd been lied to about the implications of the result, so I was a bit huffy.

Fast forward a couple of years and I'm very ill, permanently sleepy, stomach pains, bloating, join pain, moody, upset tummy, feeling generally sick... that sort of thing... amazingly, no weight loss, but I was eating four cooked meals a day and not gaining weight either... I was permanently hungry!

Last summer, I was in so much agony, I couldn't move. Went to the doctor at uni and we were discussing various reasons for my pains and I mentioned that I've also been anaemic for the last four years. Doc was still stumped until I mentioned the RAST result, and she suggested coeliacs.

Same as some, have been coming back negative to blood tests. Have chosen not to have a biopsy as my new specialist wants me on wheat for a month and a half, which I cannot do whilst I'm studying. However, I now work for my dad as a summer job and have discovered that the first specialist suggested I was a coeliac five years ago.

Can't say it's filled me with confidence with the NHS when my own dad turns around and ignores multiple warning signs that I'm seriously ill. I'm slightly concerned that he's ignoring the obvious with my sister, who was a very colicky child and turned into an anorexic look-a-like teen despite eating constantly. However, my sister has no intention of giving up gluten anyway, she'd rather be ill than live without like I have to.

Out of interest, ALL the chocolate brands responsible for upsetting my heart are the barley containing ones. Other gluten packed brands can bring me out in a bad mood within an hour. It has been generally recognised that I'm allergic to chocolate, but I'm now wondering if it's the gluten in them?

Anyway, on to the important bits - where do you guys eat out in the SE? I last ate out at Little Frankie's in Basingstoke leisure park, where although I was limited to a steak only, the waitress was very honest at admitting the chips were unsuitable and kept dashing off into the kitchen to see what she could find me... futile, but helpful non the less!

gfp Enthusiast
gfp
Posted

I'm in Central London.

georgie Enthusiast
georgie
Posted

I'm in Australia but my in laws are in Devon - so I watch the UK Forums. There is another forum - search on UK Coeliac on the yahoo.com site.

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Janiney Rookie
Janiney
Posted

Nice to see I'm not alone! It's really encouraging to speak to people with such similar experiences to mine, I'm not insane! Hurrah!

lyonspam: I had a lot of stomach problems, constipation, constant fatigue and muscle ache during my pregnancy, but it's hard to know how much of it was normal pregnancy stuff and how much of it was because I was coeliac! But my labour experience was horrendous. I was in labour 43 hours and felt I just didn't have the stamina or strength that was needed, by the end I just couldn't push anymore and I was very ill and exhausted for weeks afterwards... At the time I blamed myself for not having 'what it takes' to give birth but now I suspect it's because I was weakened by Coeliac and not absorbing the nutrients I needed, but who really knows!?

I had my endoscopy last Friday. Apparently I have gastritis, duodenitis, nodulation of the duodenum and a small ulcer. I'm guessing this could be damage done by the gluten? They took some samples and I have to wait for the results of these to see if there is the characteristic damage to my villi.

I really want to have a proper, official diagnosis in black and white so that I can feel vindicated after years of being dismissed by lazy doctors! I also need to be diagnosed so that I can get some gluten-free products perscribed (they're bloody expensive!)... does anyone know how this works?

I have been gluten free diet-wise since the endoscopy (6 days) but the symptoms are no better... I then reaslised that my contraceptive pill contains gluten! I have a doctors appointment on monday to see if I can use another method, maybe contraceptive patches.

I feel like I'm getting near to the end of this struggle now. B)

  • 2 weeks later...
lyonspam Newbie
lyonspam
Posted
Nice to see I'm not alone! It's really encouraging to speak to people with such similar experiences to mine, I'm not insane! Hurrah!

lyonspam: I had a lot of stomach problems, constipation, constant fatigue and muscle ache during my pregnancy, but it's hard to know how much of it was normal pregnancy stuff and how much of it was because I was coeliac! But my labour experience was horrendous. I was in labour 43 hours and felt I just didn't have the stamina or strength that was needed, by the end I just couldn't push anymore and I was very ill and exhausted for weeks afterwards... At the time I blamed myself for not having 'what it takes' to give birth but now I suspect it's because I was weakened by Coeliac and not absorbing the nutrients I needed, but who really knows!?

I had my endoscopy last Friday. Apparently I have gastritis, duodenitis, nodulation of the duodenum and a small ulcer. I'm guessing this could be damage done by the gluten? They took some samples and I have to wait for the results of these to see if there is the characteristic damage to my villi.

I really want to have a proper, official diagnosis in black and white so that I can feel vindicated after years of being dismissed by lazy doctors! I also need to be diagnosed so that I can get some gluten-free products perscribed (they're bloody expensive!)... does anyone know how this works?

I have been gluten free diet-wise since the endoscopy (6 days) but the symptoms are no better... I then reaslised that my contraceptive pill contains gluten! I have a doctors appointment on monday to see if I can use another method, maybe contraceptive patches.

I feel like I'm getting near to the end of this struggle now. B)

lyonspam Newbie
lyonspam
Posted

Hi all, Pam from Yorkshire tuning in.

Well, I've been gluten-free now for 2 months and feel great! I have to go for check ups with different hospital departments as there are further complications ie: thyroid, diabetes, osteoporosis as well as the ongoing skin problem that I'm now being told is eczema!!! These dermatologists will not listen to their patients <_< . Despite my skin looking and responding as Dermatitis Herpetiformis, she (the dermatologist) will not accept it and insists I have JUST eczema :angry:

Had a few teething problems with the pharmacy and my prescriptions but hoping for 3rd time lucky at the end of this month :)

Janiney - how are you getting on, have you had your reslults yet?

Is there anyone from Yorkshire area?

Janiney Rookie
Janiney
Posted
Hi all, Pam from Yorkshire tuning in.

Well, I've been gluten-free now for 2 months and feel great! I have to go for check ups with different hospital departments as there are further complications ie: thyroid, diabetes, osteoporosis as well as the ongoing skin problem that I'm now being told is eczema!!! These dermatologists will not listen to their patients <_< . Despite my skin looking and responding as Dermatitis Herpetiformis, she (the dermatologist) will not accept it and insists I have JUST eczema :angry:

Had a few teething problems with the pharmacy and my prescriptions but hoping for 3rd time lucky at the end of this month :)

Janiney - how are you getting on, have you had your reslults yet?

Is there anyone from Yorkshire area?

Hi Pam,

Glad to know you are feeling better, how was it for you in the initial weeks, did it take a while before you felt better? I'm coming up to my third week now and feeling worse if anything!

I have dermatitis herpetiformis too (my own diagnosis, but I'm 100% sure of it!) all over my arms and the backs of my legs. It's not cleared at all since going gluten-free and I have an appointment with a dermatologist on Tuesday, lets hope he knows what he's looking at! My GP agreed that it certainly looks characteristic.

No biopsy results as yet, I'm going to check again tomorrow. These things take forever, it's agony!

lyonspam Newbie
lyonspam
Posted
Hi Pam,

Glad to know you are feeling better, how was it for you in the initial weeks, did it take a while before you felt better? I'm coming up to my third week now and feeling worse if anything!

I have dermatitis herpetiformis too (my own diagnosis, but I'm 100% sure of it!) all over my arms and the backs of my legs. It's not cleared at all since going gluten-free and I have an appointment with a dermatologist on Tuesday, lets hope he knows what he's looking at! My GP agreed that it certainly looks characteristic.

No biopsy results as yet, I'm going to check again tomorrow. These things take forever, it's agony!

Hi Janiney

The first couple of weeks didn't notice much difference but by the third week I noticed that my bones didn't ache and I hadn't had restless legs for a good few days. I was also sleeping better and getting out of bed with doing it slowly. Two months on and I'm still feeling better in myself plus the skin lesions are getting less obvious. Don't misunderstand, they haven't gone and they still itch but they are flatter and not as 'angry'. The dermatologist insists it's eczema but I am so not convinced. I see my coeliac consultant soon so I'm going to ask if I can try Dapsone for the itching. My rash is on my arms up to almost my armpits and my legs up to my thighs and I have it on my back and stomach and across both hips. I'm told if it really is DH then it could take up to 2 years to clear but as I've had it 23, 2 more isn't a problem. The biopsy results should only take 2 weeks so if it's been longer you need to push them - they are in no rush!!

Let me know how you get on and believe in yourself even if they don't - you know your body better than anyone ;)

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