Biopsy results

Omg!!! So I've been off gluten for 3 years. People that have seen my posts will know I've never had the celiac diagnosis due to being passed to everyone but gastro 7 years ago and by the time I got referred to gastro I'd cut out a lot of things. Then they didn't do the biopsies as the very kindly forgot on my first endoscopy and colonoscopy 4 years ago. The consultant kept asking me to eat gluten then finally agreed 2 years for me not to eat it ever again. BUT. He decided to do another endoscopy in Jan. Been back tonight for the results. All good but biopsy results are not negative OR positive. What and how can this be. Help please ???? Xx

6 Replies

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  • I suppose what it means is that possibly you are still having something which prevents a definitive coeliac result. But not enough to rule it out. Lots of gluten stuff is still hidden in foods, maltodextin is one. I cant seem to tolerate barley malt yet it is considered a 'safe' item. So i assume i am ultra sensetive to barley.

    Did the consultant not explain it to you. Try ringing or writing to them to see if you can get answers. Just say you were shell shocked at the result and didnt take it in what was explained at the time- it might work.

  • The consultant is hard work. When I reminded him that I haven't eaten gluten for 3 years he said ok yes that's explains the result then. He sees me yearly. I have bloods checked every 6 months. B12 injections every 12 weeks and dexa scans every 2/3 years he has ordered me to have. Lots of foods I avoid including malt. Barley. Soya. Stomach is feeling fine just still got horrid rib pain. Gallbladder scanned umpteen times no stones yes. Pain rises upwards into my shoulder. Higher back. Can't find the cause. Just never heard of a result as can't rule in and can't rule out. Thank you x

  • Have just nosed through some of your old posts, maybe your b12 needs a boost. Hop into the pernicious anemia forum and see if anyone can give you some insight. It might only be a vitamin but it has so much impact on our body, especially as you have said that you dont absorb.

  • I have b 12 injections every 12 weeks and my levels checked before my jab every 6 months. Before my jab they are around the 350 mark. I was checked for pernicious anemia as soon as my b12 plummeted. It's was my dr who realised how much I had lost of my storage in s short space of time. My folate kept crashing too and my vit D. I seem to have got the levels back up on them tho. But not my B12. Things are going the right way. But honestly don't get the biopsy. I'm currently trying to get my food intact up to little and often as I'm only managing 1/2 meals a day but putting weight on. I eat healthy don't snack and am active. Could also be harmones so monitoring lots at the min haha x

  • Hi - might have been suggested in the past, but have you had your thyroid checked recently? That is also associated with gluten intolerance, malabsorption of vits and minerals and aches and pains. thyroiduk.org is very good for learning the basics and is parent to a very good group here healthunlocked.com/thyroiduk .Lots of expert people in group who can advise on symptoms, testing, interpretation, etc.

    Gillian

  • I have my bloods checked every 6 months and tft is one of them too. Thank you Gillian xx

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