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Help - I've to go dairy and gluten free !

(24 Posts)
trigger2 Thu 01-Nov-12 15:21:33

Hi

I wonder if anyone can give me some advice.

I've been seeing the doc about stomach problems which was initially brushed off as IBS, and I was given iron tablets to take. They did do a coeliac blood test which came back negative.

Forward about 12 weeks - with worsening stomach pain every day, starting to miss work. I went back today and was told my iron levels hadnt gone up at all and that it could still be coeliac. I said that i have been quite sensible about paying attention to link between symptoms and what I'd eaten and that I'd tried lactose free milk and soya milk and that these hadnt helped. She said I could be dairy intolerant or allergy, and that I need to try some sort of elimination diet. I have to cut out dairy and gluten (& wheat) and then introduce them slowly. I have to go see them again in the new year and may be referred on.

Of course you only think of things to ask once the appt is finished ! I wonder how long I have to do this diet for ? And as regards gluten what should I be careful of ? Can i eat rice ?

Thanks in advance for any help.

freefrommum Thu 01-Nov-12 15:35:05

If they still suspect coeliac disease then it is really important that you do NOT go gluten free. You should ask for a referral to a gastro specialist who will possibly suggest a biopsy. There are NICE guidelines about this: publications.nice.org.uk/coeliac-disease-cg86. If you go gluten free and improve dramatically it will be extremely difficult (& painful) to have to go back on gluten for 6-8 weeks in order to do the biopsy. I get very angry at GPs who suggest this as it is totally against the guidelines. If you are coeliac, you may well also be lactose intolerant but this will probably only be temporary and once your gut has had time to heal on a gluten free diet (AFTER diagnosis) then you should be able to reintroduce lactose without any problems. Please contact Coeliac UK for help and advice.

trigger2 Thu 01-Nov-12 15:46:13

Hi

Yes I thought of that afterwards. I think I may try it for a short time before re-introducing it, I'm not sure. I'm abit afraid of doing & feeling so much better I dont want to go back on it. But then I think If I'm seeing her in the new year even if she refers me straight away I imagine it will be a wait to see someone in gastro.
I've tried to be good and avoid milk or at least lactose in things, but I didnt find it made much difference. I was quite blunt and told the doc that I'm fed up feeling crap all the time, the pain is everyday and is just awful, aside from the fact it sounds like a brewery down there. I dont throw up and I'm not losing weight, but apparently this isnt always the case with coeliac.
I feel really fed up with this, even though she is now taking me seriously :-(

freefrommum Thu 01-Nov-12 18:37:55

Sounds awful trigger2 sad, glad the GP is taking you seriously even if she hasn't done her homework when it comes to coeliac diagnosis. You are right to worry about feeling so much better you won't want to go back on it. I've heard so many horror stories from people who've been wrongly advised to do a gluten free 'trial' and then had to reintroduce for testing - often the symptoms are even worse on reintroduction so definitely not advisable. My DD was diagnosed as coeliac 18mths ago and the only symptoms she had were chronic tummy pain (started out of the blue) and a bit of reflux. She was average height and weight for her age and didn't have any other gastro symptoms (eg no diarrhoea etc). However, since going gluten free if she accidentally ingests even a tiny amount of gluten she has horrific diarrohea and tummy pain so just goes to show how bad the symptoms are once you've been gf for a while.

I'm obviously not saying that you definitely have coeliac disease but it does need to be properly ruled out before you try going gluten free. If it's definitely not CD then you can try the gluten free diet and if it works then great, no need to go through the agony of reintroduction. Also, going lactose free won't make the slightest bit of difference is the underlying problem is in fact CD as you will need to go gf and lactose free for the bowel to heal.

Hoophopes Thu 01-Nov-12 21:38:29

Hi - agree with above posts, that you need testing for coeliac disease. You need to eat gluten for the test to work and if they say the blood test was negative I wonder why they want you to try elimination? The only way to rule it out is by a biopsy so a referral is needed and keeping it in your diet until ruled out. Am sure they can test for lactose allergy also - might be worth asking to see a dietician if you have to do an elimination diet.

Seriouslysleepdeprived Sat 03-Nov-12 19:00:25

I have coeliac disease & have always had negative blood tests. I would ask for a gastro referral rather than wait until the new year. Request an endoscopy & biopsy which is the gold standard for diagnosis. If they suspect coeliac then they should refer you.

The dietary advice sounds a bit rubbish to be honest. I was lactose & soya intolerant for the first 6 months after going gluten free, which is common. My gut then healed & it's fine again.

It annoys me when HCP say 'just cut x,y,z out your diet'. It's not as easy or simple as that unfortunately.

MoreBeta Sat 03-Nov-12 19:11:23

Yes I agree with all the above posts. The only thing I woudl add is please note that 'dairy' intolerance is not the same as a 'lactose' intolerance. The two are often mixed up by people.

Dairy intolerance is an immune response to milk protein but lactose intolerance is an immune response to milk sugar (lactose). I drink milk with the lactose taken out by treating it with a lactase enzyme. Lactose intolerance is commonly associated with coeliac due to the gut damage it causes.

I have IBS and went dairy and wheat (not gluten) free for 4 years. It now seems to have settled down and I can now have milk etc and bread - but not in large amounts.

I used to have wheat free bread with vitalite and peanut butter and a smoothy, for breakfast, home made soup and oat cake (or rice cakes) for lunch and chilli or stir fry and rice for tea.

It require loads more planning as so many things have hidden dairy or gluten in them - vinegar is one of the worst products.

At least you can still eat chips smile. I also seemed to eat a lot of jacket spuds and beans.

Maybe cut dairy and gluten products out for a week and see how you feel?

Hope this help?

trigger2 Thu 29-Nov-12 16:54:58

Quick update -

Well I did the elimination diet, carefully checking labels and ingredients. I found that milk, even lactose free, and also soya milk effect my stomach making it gurgly and feed a bit sore.
However I then cut out wheat & gluten and wow what a difference. I didnt realise how unwell I felt until I felt so much better without it. No abdo pain, & bloating noises, endless trips to the loo etc.

Of course after the 2 weeks I firstly introduced milk/dairy then wheat/gluten. So back comes the pain etc etc.

Had appt with docs this morning who seemed to have changed her tune from last time. She said she doubted it was coeliac as blood tests were clear, that maybe my stomach was just easily irritated, and that there wasnt enough to warrant her referring me to gastro. Then she topped it off by giving me amitrptyline, which she said can also be used to treat the pain. I suggested that maybe it's better to get to the root cause of the pain rather than just giving me tablets to dull it. In short I ended up bursting into tears saying I was just fed up feeling like this.

My husband knows a private gp who will do initial tests and a referral on, if needed, for £120, and he thinks its worth doing this rather than banging my head off a brick wall with my own gp. Have since spoken to a neighbour, a nurse, who said that she would go down this route as well.

I would welcome any advice or comments. I feel so fed up :-(

trigger

Floralnomad Thu 29-Nov-12 17:02:21

Don't pay to go private ,either go back to your GP and insist on a referral or see a different GP at your practice and get a referral from them.

trigger2 Thu 29-Nov-12 17:29:29

Thanks floralnomad, I actually never thought of that ! I've now got an appt with another gp in 2 weeks,so I'll see what they say. I do hate arguing or demanding with them but I'm really not happy about, imo, just taking meds to mask the symptoms rather than treating them.
Thanks !

Another thing to bear in mind is intolerance to cows milk protein not allergy.
An intolerance is just that, unpleasant symptoms, not life threatening reaction.
About 60% I think of people who are cow milk protein (cmp) intolerant are also intolerant to soya. Which is in pretty much ALL bread products.

CMOTDibbler Thu 29-Nov-12 17:41:24

If cutting out the gluten made you feel much better, then is it really worth paying money out to get a diagnosis, when you know what makes you ill?

I know three people who really can't tolerate gluten at all, but don't have coeliac disease, and they stick to a gf diet as they know it keeps them well, and have done for some years now.

MrsJourns Thu 29-Nov-12 21:58:53

Remember you will need to be consuming gluten for 6 weeks prior to any blood tests for coeliac disease.

OwedToAutumn Thu 29-Nov-12 22:09:21

Get this book.

I have two DC who are egg, dairy and gluten intollerant, and the other can eat dairy and gluten but not eggs. The recipes are delicious, although she does use oats, but I have discovered gluten free oats as well!

Seriouslysleepdeprived Fri 30-Nov-12 08:00:30

Sorry you've had such a terrible experience with the GP. I would get in touch with coeliac UK who are pro's at getting people help with diagnosis.

I would definitely go back to your own GP. I went to mine every month for almost a year before I was referred. They were sick of the sight of me but I knew something was wrong.

trigger2 Fri 30-Nov-12 09:22:05

Thank you everyone for your advice. I phoned the surgery and explained that I wanted a second opinion so I'm seeing another doc, but not for another 2 weeks. I have already spoken with someone at Coeliac uk a couple of times and explained what had been going on, they said it sounds as if I need referred for a biopsy. But this is what my gp is refusing to do. I dont know if it definitely is coeliac but theres something going on in my stomach related to eating and its getting worse, I definitely know that !
Owedto autumn that cookbook looks good, but is it an american one ? I find some of their measurements, ingredients etc difficult to work out. Yes I have tried oats, even cereal labelled as gluten free oats seem to make my stomach very cross indeed !
However I am eating normally again as I am aware you have to be consuming gluten if you are getting the biopsy.
I am starting to feel that horrible way that I'm going off my head as I do have some days which arent so bad but invariably they involve me not eating much. I hate feeling that the doctors don't listen, I felt like saying what's the point ?!
Thanks again. Feel bit better each time I let off some steam !

nightcat Fri 07-Dec-12 21:04:43

Well, you could try what I did with my ds and convince your dr to treat you as celiac as I couldnt face putting him through eating more gluten after diet trial AND the biopsy.
We did get the prescriptions, but after a short while i realised that eating carb substitutes is not going to make him healthy and abandoned the idea of prescribed stuff - now we do mostly paleo type diet with occasional rice cakes.
It also helps to avoid baked goods to limit sugar, so overall win-win. I am now also eating in the same way and no prescriptions and I feel amazing.

To me health is more important than a piece of paper and with gluten you will find the more you eat the worse it gets, so if you really want to persevere and keep eating a lot of it, eventually you will probably damage your gut enough to be diagnosed as celiac.

I am always amazed why drs dont try prevention hmm

trigger2 Thu 27-Dec-12 09:37:59

Hi all
I hope you all had a happy Christmas :-)
Well I saw the other doc for a second opinion and straight away he said I need to be referred on for a biopsy. I haven't heard when this will be yet. So I am back to eating gluten as normal, trying to have bread every day which isn't going down too well.
Has anyone here had this done and what's it like ? Do they tell you the result afterwards or do you have to wait ?
Thanks
Trigger

trigger2 Sat 29-Dec-12 09:53:01

Anyone ??!

sittinginthesun Sat 29-Dec-12 10:08:24

Sorry, no experience of the biopsy, but I sympathise completely with what you're going through.

I have been gluten free for 5 years. I test negative for coeliac, and was offered further tests, but declined them. My brother and sister are exactly the same, and my late Dad, Great Uncle and Grandmother were also clearly undiagnosed Gluten intolerant. My brother and dad had every test going, but it wasn't coeliac disease.

Tbh, after years of pain, and years of watching my Dad in pain, I just wanted to feel well. I didn't actually want a diagnosis.

trigger2 Sat 29-Dec-12 19:49:58

Aw thank you. I'm just curious what to expect. But to be honest even if the biopsy comes back as negative I think I will still attempt to go gluten free as I felt so much better when I did this. I didn't realise how lousy I felt until I didn't feel like that any longer.
:-)

trigger2 Sat 29-Dec-12 19:51:24

Aw thank you. I'm just curious what to expect. But to be honest even if the biopsy comes back as negative I think I will still attempt to go gluten free as I felt so much better when I did this. I didn't realise how lousy I felt until I didn't feel like that any longer.
:-)

notapizzaeater Thu 03-Jan-13 15:09:37

Our doctor told me on the day ds biopsy/ bowel all looked ok but phoned me a month later and told me the results have all come back and it was positive for coeliac and a dietician would be in touch ...

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