Doctors, pffff: Hey guys. I've been... - Gluten Free Guerr...

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Doctors, pffff

Orida profile image
9 Replies

Hey guys. I've been diagnosed with Marsh 3b celiac almost a year ago. I don't really have any outer symptoms or visible.problems after eating gluten tho. Also my doctor seems oblivious to what she wrote and now (with no other checks) writes me as marsh 3a.

Anyways. Because of abdominal pain of unknown causes, I was told to ask for colonoscopy. I tried, but my gastro doc said it is going to be extremely painful and that I wont stanf it and other bullshit. Gotta say it didnt really make me trust her any more than before.

I guess my sorta question is, is it really that bad and painful for some people? I know you can just sleep thru it, but thats complicated with her.

And one more, could randomly appearing sharp pain near bellybutton and at right abdomen be caused by this?

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Orida profile image
Orida
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9 Replies

I was diagnosed with low vitamin B12 and anemia. Before treating these symptoms another doctor suggested I have a endoscopy as he suspected coeliacs disease but said this couldn't be confirm until this test was done, it was the only way to positively identify coeliacs. The endoscopy is done down the throat to go towards the stomach,( which for me was a problem). As coeliacs is an intolerance and not an allergy your doctor may at this time feel its an unnecessary expense. I was lucky mine was diagnosed when the NHS had more funding. If it is coeliacs, then different symptoms affect different people, also the severity of the symptoms are different. My problems/symptoms are nothing like my sisters but we both have same diagnosis. You'll have to try the gf diet and see if it helps. If not go back to the doctors.

Orida profile image
Orida in reply to

Well, I was diagnosed by endoscopy. And been on the gf diet 3/4 year. I javem't observed any changes besides some possibly anxiety based random symptoms and pains that magically.started at that time.

Jacks profile image
Jacks in reply to

Coeliac disease definitely is not an intolerance, it is an autoimmune disease which means the body attacks itself.

1stgls profile image
1stgls

I get pain where my appendix used to live (removed in the 70s) it is worse if my sweetest little granddaughter (10months old) decides I HAVE to try her toast, and no matter how hard I try I end up with a little on my lips, and down it goes.

What is marsh 3b? You are lucky to get such a precise diagnosis, it has taken me 7 years to find out that I have osteoarthritis ...I have had xrays and the gp gives anti inflammatory with no explanation (finally a locum told me, along with the fact I have a slow growing tumour in my long bone)

It took a locum to tell me I have Reynauds!

Jacks profile image
Jacks in reply to 1stgls

The Marsh scale is THE criteria by which Coeliac Disease is diagnosed - it is the extent to which (the biopsied parts of) the small intestine are damaged (basically scrubbed bare).

Anyone on here with a definitive diagnosis of Coeliac Disease should have a Marsh score. See the link for a diagram:

en.wikipedia.org/wiki/Coeli...

1stgls profile image
1stgls in reply to Jacks

Wow! , my gp just told me that the hospital said I had Coeliac disease (DH) and I needed to find out what i wanted/needed prescription wise, no dietary advice. As I pointed out before, he's not keen on sharing a diagnosis with me just passing out medication(I have asked about other GPs in my area and they all seem just as bad)

Jacks profile image
Jacks

Colonoscopy isn't a usual request with CD but after you've had an upper endoscopy it might be worth having it and getting it out of the way if you are still in pain and the medics think it needed. Worst thing would be that it is for nothing.

The procedure itself is straightforward. The prep is a bit ghastly but that's necessary to clean the bowel. If you are awake you can see inside your bowel on the monitor. It's not usual to knock you out. They give you sips of gas if you need extra help. You have to eat a low residue diet for a couple of days, which is hard going for a coeliac but manageable.

Have it if you are still losing weight, still anaemic, or have blood in stools or persistent pain anywhere along your colon/large bowel. It'll detect crohns, the colitis's, polyps or tumours. Good luck.

Orida profile image
Orida in reply to Jacks

I am having pains of unknown origin, so might as well check that procedure on the list. It just seemed really awful to hear that and now I am looking for a different doctor to do it. I heard some thin people might really take it badly.

Snappy_1 profile image
Snappy_1

Hi there

Not sure where you are in the world, but I am in UK and have had several colonoscopy, which are done under a light sedation. They can be a little uncomfortable, but not really painful. Years ago they were done under full sedation, but not anymore. So I have had both experiences. They are certainly not as painful as child birth!! When I had have mine done I try to see myself somewhere else, ideally playing 18 holes of golf, watching the ball on the tee peg etc. A bit like self hypnosis, I use this method when I go to the dentist, I am a bit of a scary cat.

Anyway good luck with the colonoscopy, some times it is better to get these things done.

Best regards for 2017

Snappy

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