Disappointing gastroenterologist appointment

[Ansteynomad]

I have multiple problems with allergies, but can't seem to get my GP to engage, so I'm having to jump through hoops to rule everything else out first.

His latest offering, after blood test for bowel cancer and ovarian cancer, and a negative coeliac screen that I had to push for, was to sent me to a gastro.

In the four months I was waiting for the appointment, I figured out myself that removing wheat, rye and barley from my diet fixed my gastro symptoms. I expected that the consultant would be pleased to hear this and unthought we'd have a conversation about food allergy/intolerance. I was thinking in terms of non coeliac gluten sensitivity perhaps?

I had the appointment on Friday afternoon, I was with him less than ten minutes, he took no history, didn't listen to anything I said when I could get a word in edge ways and referred me for colonoscopy, although he said he expected it not to show anything and it's probably IBS. He didn't get it at all. In fact he kept asking me why I had excluded wheat from my diet when I had been told I am not coeliac!

There is no suggestion from symptoms or test results that there is anything systemic going on in my bowel, so I'm seriously considering not putting myself through an invasive procedure at this stage.

Very disappointed overall.

[cocoa]

Sorry to hear this .... they don't like us thinking for ourselves.

After going through much the same for years I decided to see privately a nutritionist, a qualified nurse who retrained when she encountered health problems and went through the same.

She has helped me no end and I hope you can soon get some help.

[Ansteynomad in reply to cocoa]

I'm thinking of exactly this.

[Ansteynomad]

Honestly I don't think he would be interested. He handed out the prep pack for colonoscopy like someone handing out goodie bags at an event. He didn't even tell me what it was.

[PinkBodicea]

Hello there

Well done for figuring our your triggers.

I had 17 different allergens at one time which made me a terrible dinner guest. Actually, the issue was gluten and I can eat all of those other 17 things.

During my multi year journey, I met a very stuffy old Gastrologist specialist pompous man who told me that he thought I was highly strung. (I might be, but that wasn't the problem with my stomach)

I like a good colonoscopy just because then you know where you are. If you don't fancy it, don't go. Just rule our gluten and carry on with life and see if it makes you better.

Sounds like you need a buddy for your new gluten free world - perhaps a visit to a nutritionist? It can be helpful - I found I ate too much fat and not enough carbs when I first went gluten free.

Wishing you luck

[virgolizzy]

Does sound like ncgs & you will be very fortunate to get your GP or a consulant on board. One thing you may have not had done, have you got,your GP to domthe standard blood Ige test, that will at least tell you if you do have allergies going on, as oppossed to intolerances?

In any event, if you have tracked down the culprits, I would keep excluding them & work on healing, then maybe at a much later stage you may be able to reintroduce them. Also if it was me, I also wouldn't go for the colonoscopy either, but that can only be a personal choice.

A very useful site for info on ncgs is purehealth.co.uk run by Micki Rose & her related site truly gluten free.

Good luck

[Jacks]

I've been on the receiving end of two of those bags of sachets being stuffed at me. They were to rule out Crohn's and ulcerative colitis. As a coeliac I've felt angst at the foods on the low residue list but am glad I had the test done as I had some developing polyps were swiftly removed before they could turn into cancer. I'm glad they weren't allowed to develop into tumours. The worst thing is probably drinking the prep rather than the test itself, but it's a means to an end and definitely worth ruling out.

In the end it's up to you.

[urbangirl]

I find myself completely changed in a doctors consulting room. I am no shrinking violet whatsoever but respond dreadfully in situations like you described. Have you got someone to go with you to your GP to discuss these problems? Maybe you could see a different consultant and also take someone with you. These appointments are so important. BTW I also had a colonoscopy and agree drinking the sachets is not pleasant - neither is the after effect! But I agree it is important to have one to exclude any other disease.

[Hidden]

Hi there

I feel for you, it really is luck as to whether we get a good doctor or not! The new ones are better but you can always get the odd few that are arrogant. My son has been under 3 gastros and the first was awful. He has coeliac and soya intol and used to be allergic to eggs and dairy. The last 4 years have been a battle to find out what was wrong.

Sounds like you have non celiac gluten intol. Or a Fodmap intolerance. I have this.

chriskresser.com/fodmaps-co...

Are you ok with sweet potato, coconut, onions garlic?

We hired a functional med practitioner/ nutritionist for my son who found him to be severely deficient in B6 and Zinc, he's doing much better. The NHS in 5 years never tested him for either of those.

You can find one here:

functionalmedicine.org

At the top right hand corner it says "find a practitioner"

It doesn't matter if none are in your area as you can do appointments by Skype.?

The lady we see charged £100 for first appointment and £50 for second. She is so thorough!

Good luck

Kikidee

[Ansteynomad in reply to Hidden]

Thanks for your reply. I am fine with onions and garlic, it’s just wheat, rye and barley that are the problem.

I am now seeing a nutritionist. It’s early days – and it’s expensive – but we’ll see how we go.

I’ve decided not to have the colonoscopy. I’ve seen the clinic letter now and his rationale for doing it is to rule out microscopic colitis, which he never discussed with me in the appointment.