negative blood result but all symptoms what next

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Hi all new to all this little help needed as I just feel like I'm getting turned away by gp.

I have been unwell since before Xmas. My symptoms have been getting worse since. Which includes mainly bloating gets worse on a evening (look like I'm 6 months pregnant) sore joints, headaches that get worse after eating, tiredness, being and feeling sick after meals, diarrhoea and constipation,dizziness, mood swings and blister type rash on hands and feet.

Been back and too to the doctors, last week I went to my doctors saying could I have celiac disease for my doctor to turn round and say she doesn't know much about it but my bloods weren't showing signs of it, for her then to turn round and say it is still more than likely ibs (been treated for ibs for months now) and to cut out gluten from my diet and see how I am!

I have now been gluten free for 4 days and feel so much better my stomach is the smallest it's been for ages headaches gone, joint pain easing and not as tired.

My worry is now that when I go back to the doctors they are going to ask me to go back on gluten. Is the any other way to get to the bottom on this? Has anyone else had same problems with gps?

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  • Posted

    Doctors have little knowledge in all areas and thus are not specialists. I have exactly the same problem as you Jane. Remember that the Coeliac antibodies test isn't 100 percent accurate and thus some people are negative in blood tests yet positive in biopsy. So if the problem seems to go when you remove gluten from your diet, by all means continue.

    My problem got to the point where I'd vomit, blurred vision, severe abdominal cramps, yet the doctor's I've seen all do not take me seriously as I'm a young adult. Crohn's is very similar to Coeliac disease. They are both autoimmune disorders, one requires gluten as the trigger other is genetic. So you could research that.

    I take turmeric, monolaurin, boswella and curcumin, ginger tablets twice a day. Krill oil 1000mg once every 2 days. 2 tablets of mastic gum before sleeping. I also take instant oats with protein shakes (contains l glutamine also) frequently. I also take probiotics occasionally. These have helped me greatly, all my symptoms except for tiredness and headaches have stopped.

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    • Posted

      Thanks for your reply. Do you think it's worth me asking for a biopsy as I've read that it can affect your small intestine. X
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    • Posted

      You could ask for it, but the experience is not pleasant as I've been told. The waiting list is also ridiculous, you'll end up waiting months. But better to be safe than sorry smile Wish you all the best x
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    • Posted

      One last thing, you must continue to eat gluten right up until the biopsy. At least 2 bread slices daily, or similar units of other foods including gluten.
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    • Posted

      The waiting lists depend on where you live in the country, plus, the NHS contract out to private health hospitals in certain areas, so you can get seen in a private clinic but it's paid for by the NHS (this was the case for me). The experience is not too unpleasant and if you ask for sedation, it helps tremendously and nothing to worry about. 
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  • Posted

    Ask your doctor to refer you for an endoscopy. Blood tests for coeliac disease are unreliable. I was originally diagnosed with IBS over 30 years ago, and my symptoms got so bad that I had severe malnutrition. My blood tests were negative but when I had a biopsy I was diagnosed with coeliac disease. Unfortunately a lot of doctors take  the blood tests as definite and don't pursue it any further.

    You  need to keep eating gluten and wheat until you have the biopsy though otherwise you will still get a negative result.

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    • Posted

      Once you get a diagnosis following a biopsy you get a yearly consultation with a specialist, who will monitor your general health (which includes blood tests to check for anaemia, and general vitamin and mineral levels etc). You also have access to a dietitian (who will recommend - among other things, that you stay off gluten free oats until your gut has healed, then introduce them again, to see if you are also allergic to those).  They will monitor your bones and you will get regular DXA scans, to check for osteoporosis - which you are more prone to, if you have coeliac disease.  You will also be able to get certain gluten free foods in prescription (I haven't taken advantage of this yet, but it is available).  

      Also, you get access to Coeliac UK free for a about 6 months, (if my memory serves me correctly) while you are adjusting to life without gluten. I now have a paid membership and have done since the free one ran out. There's a regular magazine and each year you get a new food and drink directory, which tells you of licensed gluten free products and much more help is available to you, including an App for your phone.

      As coeliac disease is an auto-immune disease, you will also be entitled to a yearly flu jab and of course, on-going help for your coeliac 'condition', so it is well worth getting a proper diagnosis.

      Hope this information helps you. Please see my comments above to Cemo regarding biopsy, it really isn't as bad as Cemo has suggested and if you are nervous ask to be sedated, you will be much more relaxed (although you will need someone with for 24 hours afterwards for safety reasons).

      Good luck and keep us posted as to how it goes. 

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  • Posted

    Hi Jane

    This is becoming such an increasing issue for people. I'd just re-iterate what everyone else says and I also I'd suggest you call someone at Coeliac UK as well. GP's are not specialists, and, reading what we do on here, it does seem like the blood tests are not 100% reliable. If I were you, I would insist on an endoscopy (make sure you get sedation otherwise it's not pleasant, with sedation, it's fine) and unfortunately, as soon as the endoscopy is agreed to, I'd force myself to eat a bit of gluten every day for at least 6 weeks. It's the only way to get a proper test of the villi in the gut. Not easy, I know, particularly if you're getting relief from the gluten at present, but I would want to get to the bottom of it. For example, if, in the future, you were hospitalised for another illness, if you are a diagnosed Coeliac, they must provide a gluten free diet, and they are given a budget for that. You can get gluten-free food on prescription, that sort of thing. It's worth getting diagnosed if Coeliac is the problem. Best of luck.  

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  • Posted

    You need to be eating at least 4 slices of wheat bread per day for 6 weeks before the endoscopy.   You can also have a skin biopsy of the rash to see if it is dermatitis herpetiformis which is also caused by gluten. (Usually done by a dermatologist but you probably need a referral from your gp) You will probably need to be eating gluten for that also.
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  • Posted

    Hi there

    I can't really add much to what others have said except regarding Fiona's reply about follow ups. I was diagnosed in 1998 and have never been offered follow up checks unless I havehad a problem. I suppose it depends where you live but my doctor was amazing because he suspected coeliac when I first moved here after I had been having problems for years and weighed only 7 stone. I had most of your symptoms but returned to normal fairly quickly once I was gf.

    Good luck with it

    Natalie

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    • Posted

      Hi natcann,

      I am really surprised that you have not been given any follow up help after diagnosis. This is disgraceful.  Your doctor might have been on the ball, suspecting you may have Coeliacs but he hasn't been much help since by the sound of it. You are entitled to it and if I were in your shoes I would ask my doctor why these things haven't been offered. Might I enquire what part of the country you are in?

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  • Posted

    Regarding follow-up. I get a full annual blood check and I have had 2 colonoscopies and 2 endoscopy since I was diagnosed. I was led to understand that I am entitled to that.
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