|
|
Rank: Advanced Member  Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
|
Hello all.
Had a shocker of a row with GP today about my bellyaches today. While we all seem agreed I have 'an auto-immune intestinal problem' getting a differential diagnosis and oh I dunno, some treatment, decent advice for self management, seems to be of no interest to anyone except myself. Can you tell me about your coeliac's/crohns'/IBS and the like, diagnosis, treatment, management?
Mine kicked off after 1st baby delivered. Had bigger fish to fry and ignored the symptoms for a year or so. Finally twigged I needed to do something, reduced gluten intake, mostly coped. After 2nd baby born, it went nuts again, stopped gluten, helps hugely. When I eat gluten I get go-to-bed ill two days later. EG today I am day 2 of endless nausea and diarrhoea, can't eat, barely drink etc. Must have been some in the soup I had at a cafe. Both husband and I off work today, not good. I was supposed to have an iGa for Coeilacs test late last year, but the lab missed the instruction to do it, twice. I can't be tested again unless i eat gluten EVERY DAY FOR 6 WEEKS. I just can't do it, I'll be in pieces and my family won't work. If i can't do that, I can't get the gut biopsy to confirm the diagnosis. And everyone is foscusing on this as likely diagnosis. Not testign fr IBS and crohns. GP very annoyed i won't do 6 wk gluten challenge. Says the gut guys won't accept her referral if I haven't got a +ve iGa. Ipointed out they would if i had these symptoms and a -ve iGa and I've got one of those, because they finally eststed me against my wishes when I wsa gluten free. GAH! Rheumy said Humira would help if the problem was crohn's. I thought it had, but then realised it was simply that I had also gone dairy free, symptoms were a bit better.
Anyhow whata row. Good to vent. Expect this to turn up on my blog as well soon. Oh i do feel ill. I am off to bed now with wait for mi, my RA painkillers to take ++ on her advice, as they are constipating. WHat a joy. I'm no even sure I sould muck a dicky gut like mine around with these meds. Oh well.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 1/5/2010 Posts: 89 Location: Mereworth, Kent
|
Oh Merryberry, what a nightmare!  It really is a catch 2 situation. I had the initial test for coeliac ( is that the IGa?) and the consultant said I shouldn't try a gluten free diet in case I then needed a biopsy. In fact it was normal, and I don't have bad symptoms, just some other factors which made them suspicious. However I knew if I had symptoms I would have gone gluten free at the mention of coeliac - surely it is human nature to do whatever you need to do to survive? Why can't medics listen and work with us, rather than make life more impossible. I hope you find a way out of this. Hope you have a restoring weekend love from Alison xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Sorry to hear you're so poorly Frankie.
As your symptoms improved with a gluten free diet , do you need a formal diagnosis?
I can't think why the docs want to put you through 6 weeks of agony just for them to get it confirmed, wouldn't it be better for you just to carry on with the diet?
Alison's right when she says why can't they listen to us and work with us instead of always having to make things more complicated.
Hope you feel much better soon.
Love and hugs,
Doreen xx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
|
it's just that even when off gluten i still er, go to the loo several times every morning. improved, in that i don't also have double me over cramps and some other unmentionable attributes. better much with no gluten, but its not right, and i know i'm at risk of osteo porosis etc from poor mineral uptake. i need a diagnosis to access help for the gut, and all the possible sequalae of it. yes, i think iGa is the gluten related test.
how are you getting on now alison?
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
|
Dear Franky,
I have been coeliac since I was 15mths old. I am afraid one has to be on a gluten diet for them to dx properly. I have done this five times. It is something they must do in order for them to get a good biopsy. You can be tested via blood but it is only 99%, a biopsy will give a definitive dx.
Gluten is like glue, when one stops eating gluten it can take up to 2 years for it to be rid of the body. Symptoms can sometimes go quickly but other times they linger on for ages. It also causes; anemia, bad skin, constipation, panic and anxiety disorders, bad sleeping and headaches.
I have a dear friend who has coeliac disease in her family, and when her (then) 18mth old baby presented with upset tums, mucus etc she took him off all gluten and it worked a treat, so even though he's not dx officially he is treated as such.
Gluten is in SO many foods, you need to try and get a directory to see just how many foods it is hidden within, it is astonishing and very negligent. They are trying to get the labels on all foods....
I would ask for an appointment with a gastro to sort this out once and for all.
Love,
Amanda
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
|
Hi Frankie, Sorry to hear you having a rough time. I have a sensitivity to gluten and suffer from IBS. Amanda is right although you may have excluded gluten from your diet it is hidden in many foods, which we are often unaware of. If you have been very careful and read the labels and so forth and totally excluded gluten from your diet it sounds like you may also be suffering from IBS. I agree with you if you know that eating gluten will make you feel awful why eat it just so that it can be confirmed by a test? You already know that you feel better not eating it so why put yourself through 6 weeks of hell - I wouldn't. I am not a coeliac, but do feel better for not eating wheat and foods with a high gluten content, and manage to control my IBS by not eating wheat and diary, e.g. foods containing lactose and cows milk proteins, however do occasionally eat small amounts of goats and sheep products. I know if I've eaten anything with a large amount of diary in it, I pay for it later with cramps, runny tummy, and need to be close to a loo, also makes me feel physically sick and exhausted. I only cottened on after reading an article alleging that 80% of people of Asian origin are lactose intolerant - I'm half Indian and Irish. I've also read that a high proportion of Irish or people from a Gaelic background suffer from Coeliacs - you live and learn. LOL. Feeling totally ignored by the NHS, I went and had a private test done with YORK allergy testing service and sent a sample of my blood off and they looked at the ige response to foods to determine whether a person is intolerant or allergic to particular foods. The test is expensive, but worth it you not getting any joy form your GP. http://www.yorktest.com/...llergy-or-intolerance/. It confirmed that I was intolerant to wheat and diary, certain nuts, and sensitive to some other foods. I've just bought a gluten free bread machine baking cook book and will let you know how I get on - could bake you a loaf instead of you having to go to Whole Earth? Hope you feel better soon, Love, Barbara PS. We can share Humira stories as I'm on it now too!
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
|
You're right Barbara, a third of Gaelic people will have a gluten intolerence! The gastro told me this.
Which gf bread book do you have?
I am making onion bread later with rosemary.
Love,
Amanda
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
Also Franky, if you don't have a diagnosis you can't get gluten free products on prescription. So sorry you are ill, hon xxxxx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
|
there is a website which is good with a help line . As once i was on a glutun free diet .Cant rembember the website but helpline was good christine The chocolate eating housewife ...The washer woman .....naughty lady
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
|
I'm sorry you're feeling so poorly, no wonder you don't want to do the test for 6 weeks. I don't have any advice for you, just to let you know I'm thinking of you.
Lyn
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 263
|
I was treated for IBS for about 18 years before i managed to get tested for this .I took colafac pills all that time and they done nothing. They sent for bowel xrays and tests a few times but never tested me for coeliac until five years ago when i was very ill and i insisted on a test. Even then the doctor said i wouldnt have it. As a result of this i have osteoporosis. I'm sure this caused me to have RA because i was undernourised for years . Also i was anaemic and very thin.If anyone suspects they might have it i would insist on a test. I manage to eat well its only really a problem when eating out.I was very angry when i realised how serious it can be when left untreated but i am fine with it now . Kathleen Mc.
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 1/5/2010 Posts: 89 Location: Mereworth, Kent
|
I'm ok thankyou Frankie. Like Barabara I think I come under the category of "sensitive" rather than intolerant.
I have intrinsic factor and severe Vit D deficiency which made them suspicious, but my abdo problems are nowhere near as bad as yours, so was happy for them to drop the subject!
The endless side effects from all the DMARDS have upset my stomach more than anything and once I've settled on Humira I'll sort my diet out and look at gluten, dairy etc.
I used to be so proud of my cast iron stomach!
My endocrinologist was VERY plain that I would have to continue with gluten to get a coeliac diagnosis, and Jean is right, you need that to get access to the extra help ( food, dietician etc ) Maybe a proper discussion with a gastro would help with finding a way forward.
love
Alison xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
|
Hi Franky, this is just not on!!! hoe can you be expected to eat a diet for 6 weeks when it makes you so ill after only an accidental amount of gluten? I understand they need to do the test, but surely its obvious what the problem is, and should treat you for it BARBARA
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
|
have read, with many thanks, am wiped out still back off to bed, see you soon i hope, xfx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Hope you feel better soon Frankie.
Doreen xx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 11/28/2009 Posts: 238 Location: North London
|
seem to be ok. as long as i don't eat. hmmm 
|
|
|
|
|
|
|
