Searching For Refractory Friends

[Meg123 2]

Hello Again

I've been spending a lot of time in here over the past couple of months, I've become a bit fixated trying to work out whether or not to expect to see a positive biopsy or not. Too much googling, read too many study's etc on the chance of false positive ttg in the bloods vs the negative gene test. I'm reading a lot of varying results. Sending myself crazy.

I phoned the lab to see if I could get any info on which genes I actually did have, (since the report only said that I didn't have DQ2 or DQ8) ie after reading in here I see lots of members have DQ1. But they wouldn't give me any info , telling me I had to go through a Dr.

Anyway, I have stayed on the gluten even though I crumbled after three weeks, but just not hammered myself as much. I have my first initial appointment tomorrow with the specialist GI Dr. I'm in the process of writing down my symptoms so I don't forget. I was just wondering if anyone has any advice for me. I seem to have an awful tendancy to rub Doctors up the wrong way somehow this is all costing more than we can afford and I just don't want to stuff it up, and have him refuse to biopsy me. We're not in a position to go and get 2nd or 3rd opinions.

[ravenwoodglass 1,348]

I hope the doctor is helpful for you. If he does agree to biopsy do keep in mind that can be a false negative so do a gluten free trial after the test. You don't need to wait on the results.

If you were gluten free for a bit and it helped make sure to stress that. If you are doing a challenge and you have kept a symptom journal do bring that with you.

One thing that I should have stressed more with my GI was that I was being woken out of a sound sleep every night with D. I mentioned it but apparently he wasn't listening as after I was finally diagnosed and I mentioned how I was now able to sleep through the night he said 'I wish I had know that as waking up at night with D is not an IBS symptom' I told him I had mentioned it more than once and though he did apologize it certainly didn't make me feel less angry with him.

[Meg123 2]

......

One thing that I should have stressed more with my GI was that I was being woken out of a sound sleep every night with D. I mentioned it but apparently he wasn't listening as after I was finally diagnosed and I mentioned how I was now able to sleep through the night he said 'I wish I had know that as waking up at night with D is not an IBS symptom' I told him I had mentioned it more than once and though he did apologize it certainly didn't make me feel less angry with him.

thats so frusterating. It's annoying enough when DH does that , but when you are paying someone a LOT of money to care and listen to what you say regarding your health, which was why you were there,