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Living Gluten Free Without Diagnosis Uk
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3 posts in this topic

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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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

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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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    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
    • Couldn't have said it better!  
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