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Living Gluten Free Without Diagnosis Uk

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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


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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


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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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    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
    • Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
    • Your test results, to me, seem to indicate that you do not have celiac disease. (Everything is within normal levels.) And, your total IgA is high. Many people with celiac disease have low total IgA levels (10-15 times more frequently than people in the general population). The total IgA is conducted because about 3% of people are IgA deficient. If you have a very low total IgA, that can invalidate the three blood tests that rely on your IgA levels.   Plumbago
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