Don't know what this referral to gastroenterology means?

I'll try and write this really briefly. I have had chronic IBS since 2 years old (constipation) and I've had additional symptoms for the last 10 years too (I'm 21). I ended up going to endocrinology and they found I had a bad b12 deficiency and now I'm on injections for the rest of my life, we still don't know why I have this. I also keep getting borderline vitD deficiencies. My gran has coeliac disease and I have been tested several times, the endo sent me to a gastroenterologist, had an endoscopy to test for this and it was negative but most symptoms did point to CD. They signed me off a while ago.

During my last appointment with my endo (3 and a half months ago) he mentioned an expert is rare bowel diseases at gastroenterology at another hospital that I could ask my GP to see if I wanted but he didn't seem too bothered. That day I also got tested for Vitamin D def again and I asked to have my B6 tested. 6 weeks after this I got a letter saying I was borderline in VitD again and gave some vitd pills, they never mentioned the B6. That was it.

Now today, 3 and a half months after the endo appointment, I get a letter from my GP saying the endo has referred me to the rare bowel disease guy, basically another referral to gastroenterology. I know he mentioned this in the appointment but I don't understand why he would suddenly decide to refer me so long after our appointment? Why wouldn't he mention it along with the vitD letter? Also he's sent me to a gastro before and they signed me off saying there nothing really they can do and that my symptoms seem managable (which to be fair they are, I'm in a good laxative routine). Does this imply that perhaps my b6 result was bad? I'm just finding it a bit unsettling that I've seen referred to a department and its not entirely clear why?

Thanks for reading, I did try and keep this short!

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  • I'm not expert, but maybe they are looking more closely to why a 21 year old has absorption issues. I'm usually on the B12 deficiency/PA site as I'm waiting for an app. with gastrologist to look into coeliac.

    A lot of people with PA are usually vitamin B12 and B6 deficient along with vitamin D and sometimes iron deficient too.

    As for the sudden interest from GP it could be anything from only just getting a letter back from the gastrologist (it can take time as it goes through secretaries) or he may have had a rethink to your treatment. GPs aren't particular good at nutrition, they only skim over it at medical school, they leave it to others, dietitians etc. Don't get worked up about it, I know it can drive you mad the not knowing! If you are concerned ring the surgery and ask for a telephone appt. tell the receptionist how bothered you are and want to speak to the doctor, at least to put your mind at rest. Try not to worry, and maybe have a look at the vitamin B12 site. X

  • Hi CarlyS123.

    I'm new to this site - so bear with me! And I'm no expert. Had lots of investigations by gastroenterology departments (Colorectal AND Gastrointestinal). I don't have Celiac's either, but they thought I did till they blood tested for it.

    Could it be, do you think, that your Endocrinologist (3 & half months ago) wasn't convinced that you'd been fully investigated by the first gastro? And - didn't know, when he sent you your VitD letter, that your GP had not referred you to the expert in the other hospital that he'd mentioned? It seems that your endo and GP have been communicating and now endo has realised you haven't been referred yet he's decided to refer you himself and asked the GP to let you know?

    It sure is unsettling, there you were, thinking your hospital appointments were all over & done with - getting on with your life. Then suddenly you get this letter from the GP!

    As greenbexy said, these letters between hospitals and GPs take time. And didn't your endo mention this other specialist before you were tested for B6 anyway?

    Best wishes

    Mary

  • Hello - I found I had Coeliac disease by cutting gluten from my diet and I felt so much better. It was later confirmed by endoscopy.

    I was wondering whether adjusting your diet whilst keeping a food diary might help you if you have not already tried it. Good luck and let us know how you get on. 😃

  • I've cut out gluten too after eating more of it thinking I was going to get an endoscopy soon, but apparently it's going to take 6 months, so I was thinking now if I definitely have coeliac disease, the damage will be healed by then. How long had you been gluten free when you had your endoscopy? The gastroenterologist said I would need to eat gluten again for 6 weeks before the procedure, but I could only manage 10 days straight before I was too sick to go to work, then after a 6 day break, I managed another 14 days because I was on annual leave anyway. He said I could go gluten free for now but I don't think I could face eating that stuff again. I just want to get well again now- I have anaemia, vitamin D deficiency and osteopenia already (I'm 30). Maybe there will still be some visible damage even in 6 months time??

  • My blood test showed strong antibodies for gluten even though no one told me I should be eating gluten when I took the test and i hadnt eaten any for a couple of months so it must hang around in the body for a while. I have no idea how long though.

    Then I read the Coeliac org website and started eating gluten again before the endoscopy. However it was only 3 weeks before the test and I was worried as they recommend you eat gluten for 6 weeks. Luckily for me it was enough to diagnose me as coeliac. Hope this helps ☺

  • I'd be pleased that I was being taken seriously. At your age you can save a lot of later problems by getting sorted out now and not having decades of ill health. So don't focus on one thing (like the B6), let the experts have a fresh look. Good luck.

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