Worried my blood will be negative & doc wont refer me to gastro

Hi there I'm a new member and looking for some help I am nearing the end of my 6 week Gluten Challenge to get tested for celiac its been a painful 6 weeks and I've had so many symptoms diarrhea, constipation, headaches, pin and needles in my hands and feet, numbness in my hands, brain fog, fatigue, sore limbs, looking like pregnant, nausea, sore teeth etc. All my issues have been going on for years but gradually getting worse but for years its always been put down to not having a gall bladder ( it was removed after an infection). I have tested positive for the gene but my doctor said that unless I test positive with the blood test she wont refer me to a gastro even though she has listened to all my symptoms. Is this normal? Im worried that Ill test negative and my doc wont do anything with me after? Any advice is helpful.

11 Replies

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  • Hi oreillynic,

    Sorry to hear that the last few weeks have been so difficult for you - I can only imagine it's been like. I was one of the 'luckier' people who only had to give up gluten once I had a diagnosis. However the waiting to know really played around with my head in the interim period.

    Try to take it one step at a time and focus on getting your hands on those results. You could potentially be worrying for nothing. If you're concerned when you have your appointment, ask for the exact number and the ranges used for the test to be written down for you before you leave. That way you will be more informed if you decide that you need a second opinion.

    Don't worry about testing negative. It doesn't always have to mean that you have no issues with gluten, just that gluten doesn't affect your immune system in a way that can be medically tested (you may still be intolerant). It sounds like you might have already been gluten free in the past, so could easily choose to go back to being gluten free again. You seem to have proved to yourself beyond all doubt that gluten makes you ill and in many ways the treatment is the same - a gluten free diet.

    For many people, taking a multivitamin in the first few months after going GF can be very beneficial. It can help to replace lost vitamins and minerals. However in my own experience, the exception to this would be B12. If this is low, push your doctor for injections straight away, especially if you get a Coeliac diagnosis.

    Hang in there!

  • Thank you so much for the reply I will get a print out from her and see if I need to get a second opinion. I went gluten free after I got my gallbladder out as I was having so many issues (looking back I should have pursued this more but I was just dismissed by the doc). I cant wait to go back to eat a salad :)

  • Attitudes towards Coeliac Disease (and the knowledge of it) have significantly improved in the last few years; but even amongst the medical profession, people are still sometimes falling between the cracks when it comes to getting a diagnosis.

    I consider myself fortunate that I had a switched on doctor who asked the right questions at the right moment.

    However that said, much of the subsequent aftercare I've had, has been something I've had to put up a fight over - and for almost every step of the way; so I understand how you could have been made to feel like you were worrying unduly. Btw, more often than not, I was later proved right...!

    What I had to learn was to politely question what I was being told until I understood the rationale. Unfortunately I can also say that on a couple of occasions I've had to cut my losses with a particular doctor and re-book with a different doctor in the same surgery to get a more sympathetic and relevant/useful result. A waste of time time and energy for sure, but sadly something I found necessary. GP's work so very hard and like anyone, they can have their off moments.

  • Are you in the uk? If so where did you get the gene testing done a I'm interested in having this done.

  • Hi Blondie2505 Im in New Zealand but my doctor did it so many you could ask your doc if you could have it?

  • Hi, I recently had a negative result after doing a hellish 6 week gluten challenge.

    my doctor suggests I have an issue with wheat. And I know from experience that I react to wheat and so I now avoid it and anything that could be contaminated with it by avoiding gluten.

    And when I'm all healed and feeling better I'll try to unpick whether it is wheat or gluten as it's possible I have non gluten coeliac sensitivity.

    I too was disappointed to be negative as i wanted answers.

    Six months of being gluten free before the challenge and I felt like a new woman. No brain fog, no painful joints, no D, no pain.

    how could it possibly be negative!!

    but it was, which was a shock.

    however the positive was I didnt need to wait for a gastro appt and i could stop eating gluten and take back control of my diet and health.

    two months clean and I'm feeling much better. Clearer head, better joints, upper abdominal pain reducing.

    Feeling better week by week and more positive. I still don't know exactly what my diagnosis is, but I know what I need to do to keep well.

    Best wishes

  • Hi Kaspa

    Thanks so much for sharing. I understand how you feel I think I will be a bit shocked if it comes back negative after all the symptoms! But if it does i know gluten doesnt have a good effect on me. Sounds like you are doing very well without it :)

  • Hi oreillynic, I'm much better now I'm off the 'nasty' stuff again :)

    Good luck and best wishes with your journey and let us all know how you get on.

    Kaspa

  • Hi Kaspa my results came back negative and my doc said nothing else she could do just stop eating gluten and then dismissed my symptoms to a possible tummy bug im so disappointed :( She printed out my results for me and the positive gene result said refer for endoscopy if clinically indicated so I feel like she could have referred me on my symptoms but chose to just wash her hands of me!

  • Many doctors fall short & only look at one thing & not the whole picture which is a shame. HOWEVER you know what causes the issues so you are half way there already. You are probably ncgs or maybe allergic to wheat. You could ask your dr to do an allergy test for wheat just to rule that out, I can't see why she wouldn't, see if you could sneak in a b12 & d3 test too, but your dr may just be that obstinate she'll say no. You could get those tests done privately for your own peace of mind & to track your own healing progress.

    Have a look at a website trulyglutenfree.co.uk & purehealth both run by a Micki Rose, lots of info on there which you may find useful, some free some not & you can access the tests. The website has changed & in my mind is a little difficult to find things but stick with it, as the info is hugely helpful.

    Just remember, listen to what your body tells you & hold onto the fact that you know what causes the issues, cut out the gluten, repair your body & you will have control back over your health. Good luck.

  • I know how gutted you feel that it came back negative. And it must be frustrating and infuuriating to have your symptoms dismissed as a tummy bug!

    some of the medical profession need to actively listen to our symptoms, think about the bigger picture and not be so dismissive. It isn't in their model. They just don't get it!

    there's a significant number of us who have strong symptoms and are negative.

    It's possible that the tests just don't work for some of us. Or we are in early stages and haven't got to full blown CD yet. Or ad my doctor thinks it could be wheat intolerance.

    You and me both know what makes us ill. It isn't in our head, nor a tummy bug. We have physical symptoms and can document and explain what causes it. But as in many diseases the medical testing and knowledge lags years behind.

    I've got over the disbelief and shock, I take this positive, it is really good news because we've caught it early. We don't need an endoscopy or repeated biopsy's.

    So I don't have some words on a piece of paper but

    I've recognised that I'm in charge and I'm the boss of my own gluten free healthy future.

    so Just give it time and keep talking and eating gf.

    It will get easier x

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