New and waiting gastroenterologist appointment

[AM63]

Hi all I am so happy to have found this site,I am waiting for a full diagnosis ,I have had problems for a lot of years but never once did I think I could be gluten intolerant or ceoliac.    I was told many years ago by a GP that I had IBS ( no testing done) and would just have to deal with the symptoms.So I went away and did just that, not always very well. In Jan this year I had 2 weeks of very bad stomach symptoms,I ended up at gp and was told it was a virus. After I went back to work I still had unpleasant symptoms of  diarrhoea,Vomiting,,awfle fatigue so bad I had to drag myself around,I got migraine headaches, bloating joins pains I could go on. It got so serve that I want back to gp I had  lots of blood tests, all normal and was signed off of work, I was given some medication, which did nothing but was told to keep taking,I then had a problem with the anti diarrhoea med as I get an allergic reaction to it.and was then given codeine which helped the diarrhoea but knocked me out. I then had a colonoscopy with neg results, so told again IBS , to have to deal with it the best I could all this time I was off work. I went away defeated. I gave up the IBS meds as they did nothing to help. I went one last time to my gp and saw the advanced nurse practitioner,she straight away said you need a gastroenterologist appointment ,stop gluten and come back in two weeks ,what amazing results I had I started to feel better very soon,within 4 weeks I am back on a phased return to work and awaiting my hospital appointment. Sorry for the long explanation,but I wanted to say do not give up when you know the diagnosis is not fitting your symptoms,it has taken a very long while for me but I now feel more positive,even though I have a long way to go ,and still have fatigue and headaches. I will also need to start eating gluten again I know,but that is necessary for the diagnosis , ,and I will deal with the symptoms when they start .

 

[frieze]

if you have gone gluten free, it is too late for testing.  you need to be eating gluten right up to the testing, all testing.

[AM63]

Hi thank you for this , but as there are no appointments available for the clinic to see the gastroenterologist my gp has decided that it is best if I stay off of gluten until I have a date for the clinic, which could be quite a wait once I have the date I will start gluten again as my gp has advised I did question this as I have read up about intelorence and Coeliac,but gp said due to circumstances to do as she advised. Thanks again for the reply

[Jmg]

Welcome! You've found a great community, there's a lot of useful info and support here from people who have been through very similar experiences to your own.  I hope you find it as useful as I have.

Congratulations for sticking up for yourself and finally making some progress with the medical establishment. It's not easy. 

4 minutes ago, AM63 said:

Hi thank you for this , but as there are no appointments available for the clinic to see the gastroenterologist my gp has decided that it is best if I stay off of gluten until I have a date for the clinic, which could be quite a wait once I have the date I will start gluten again as my gp has advised I did question this as I have read up about intelorence and Coeliac,but gp said due to circumstances to do as she advised. Thanks again for the reply

I know others here will share my frustration as I read your story, because it's happened again and again. On the positive side, you may well have found the cause, on the negative, like me and many others you did it by removing gluten prior to diagnosis which makes it more difficult. As you know you will have to resume consuming gluten for probably 6-8 weeks for diagnosis. It's good that you have such a positive attitude as this challenge can be tough, once off gluten you can react differently to reintroducing it. 

One suggestion is to keep a food diary, noting what you eat, when and how you feel. If you do this prior to the test period you'll be able to see what was clearing up beforehand and what happened once you reintroduced it. This can be really useful, particularly if you test negative, because your own experience can help motivate you to stick to the diet.

All that's to come however and if you post here you'll get lots of support when you need it. For now, enjoy feeling better and have a look at some of the threads on healing the gut and countering malabsorbtion - even on the challenge you can make sure you're eating as well as possible and giving your body the best chance of healing. 

Best of luck! 

[AM63]

3 hours ago, Jmg said:

Welcome! You've found a great community, there's a lot of useful info and support here from people who have been through very similar experiences to your own.  I hope you find it as useful as I have.

Congratulations for sticking up for yourself and finally making some progress with the medical establishment. It's not easy. 

I know others here will share my frustration as I read your story, because it's happened again and again. On the positive side, you may well have found the cause, on the negative, like me and many others you did it by removing gluten prior to diagnosis which makes it more difficult. As you know you will have to resume consuming gluten for probably 6-8 weeks for diagnosis. It's good that you have such a positive attitude as this challenge can be tough, once off gluten you can react differently to reintroducing it. 

One suggestion is to keep a food diary, noting what you eat, when and how you feel. If you do this prior to the test period you'll be able to see what was clearing up beforehand and what happened once you reintroduced it. This can be really useful, particularly if you test negative, because your own experience can help motivate you to stick to the diet.

All that's to come however and if you post here you'll get lots of support when you need it. For now, enjoy feeling better and have a look at some of the threads on healing the gut and countering malabsorbtion - even on the challenge you can make sure you're eating as well as possible and giving your body the best chance of healing. 

Best of luck! 

 

[AM63]

Hi thank you so much for your support,it is good to find somewhere you can be totally honest about symptoms and feelings where it's not an unwanted subject. I wish I could speed up appointment ,but I do understand why not so doing the best I can with how I am at the moment,and will deal with gluten diet when it happens and just hope if I am very bad again work will be considerate.Once the gastroscopy is over with I will be able to move forward.That may be a while yet so will keep as positive as I can.

[Jmg]

If you're anything like me you may find that a lot of other things clear up or improve that you would never have associated with gluten. My main symptoms were, I thought, neurological, but as my diet changed I found the backache I'd 'managed' for 20 years disappeared, eyesight issues went, chest pains etc etc. 

There's things you can do in advance of seeing the consultant also. It may be that the dr's have already checked vitamin levels, but you may want to get a good multivitamin and B supplement and see whether taking those helps? I also tried to include probiotics and bone stock/broth to heal my stomach. If you can get as healthy as you can now it may help you if or when you do a gluten challenge.

 

[AM63]

Hi thanks for the advice I will definitely get some vitamins and probiotics. Not sure about the broth yet.thanks again for your advice,I just checked again this week and no appointments available as yet so going to be a lo g process.