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Living Gluten Free Without Diagnosis Uk

heldraincloud

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heldraincloud Newbie
heldraincloud
Posted

Hi all

 

Ive struggled all my life with bloating, over the past few years symptom progressively got worse, I first removed Dairy but that didnt help so removed wheat and within 3 days I felt wonderful

 

I went to the gp's for a blood test but obviously as Id been living gluten-free for 6 months it was negative, I will continue to follow a gluten-free diet as theres no way I can reintroduce it now just for a diagnosis.

 

How do you all manage your symptoms? I still have bouts of bloating and other problems, so take charcoal capsules and buscapan for IBS

 

I wish it was easier to diagnose and manage

 

Louise xx

  • 2 weeks later...
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KCG91 Enthusiast
KCG91
Posted

Hey,

I got a positive blood test in September (almost by surprise) but got so freaked out by the idea of what gluten was doing to my insides that I cut it out immediately and will not be going on a challenge for the biopsy or anything. 

Have you been tested for other deficiences? In my head I'm almost 'bulking out' my blood test results with the fact that my GP also discovered that I have developed severe anaemia since I was last tested a few years ago.

I'm taking prescribed iron for the anaemia, as well as a calcium and vit D supplement from the chemist, just for luck ;) as I read that that's what coeliacs are often deficient in. Peppermint tea is brilliant for tummy things and I find that what I have for breakfast makes a big difference to how I feel that day, so I have eggs or gluten-free bran flakes with a tablespoon of linseeds (good if you get C)  and orange juice and herbal tea. Oh, and SO MUCH WATER. 

I find it tempting to think that I *should* be cutting out other things because many other people find that it helps. However I'm trying to remember that although my blood test was very positive, I don't have major GI symptoms and so long as they are improving I'm not going to worry about the rest of it.

Good luck! xx

cristiana Veteran
cristiana
Posted

Hi Louise

 

I was diagnosed by endoscopy and have been gluten-free for six months now.  Initially I continued to get bloating, stomach pain and D.  All that has pretty much gone now...  in my own case the following brought around an improvement.

 

I gave up dairy pretty soon after gluten as my stomach was still v. uncomfortable and continuing problems with D.  This really helped.

 

Then I discovered that even gluten free oats gave me stomach pain and D so gave them up.  I thought I might be having a reaction to the protein found in oats but my nutritionalist looked at it from another angle... maybe it was the type of fibre that was causing the sore stomach and D.  She might be right because I then noticed I had the same problem with lentils.  I used to eat oats and lentils all the time so I am going to try them again after a year gluten-free, in case the pain is caused by eating this type of fibre where there has been a lot of villi damage, which can take up to two years to repair (according to my NHS dietician).

 

The other thing that gave me problems was soya - it is so many gluten free products in the UK.  As I love cakes and biscuits I was eating  these and they contain soya flour - more stomach ache!  So gave it up too.

 

I think it is a lot of trial and error unfortunately but from what I have read the above foods can cause problems.

 

I'm told a food diary might be worth doing... I found one on an IBS website but haven't tried it yet.  Have you done this?  For me gastro symptoms are no longer the issue, just vertigo, but of course it might be nothing to do with coeliac disease.  

 

Also find ginger in hot water a v. soothing drink when I feel a bit stressed.    It calms the stomach and somehow makes me feel more relaxed.

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