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Positive Biopsy But Doc Says I Do Not Have Celiac?

no7ang

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no7ang Rookie
no7ang
Posted

hi, i had an endoscopy a couple of weeks ago where 4 biopsies were taken  (re weight loss, pain, constant tiredness and feeling generally unwell) and when i saw consultant for results   i was  told that i had a hiatus hernia and area of gastritis in stomach (incidental findings apparently and not an explanation for my symptoms) the biopsies however  were abnormal and although consultant mentioned celiac he didn't go into any details  as to abnormal for what, he was more concerned about an abnormality of small bowel seen on CT so sent me for an urgent MRI--- anyway since had MRI and colonoscopy and went back to see consultant today--expecting the worst as i had looked up celiac and associated complications!!! outcome was no cancers so thats a relief ---but do have matted small bowel loops which may be due to hernia (??? consultant said he will have to re look at scans!!) anyway  i asked about the original abnormal biopsies and celiac and he said that although biopsies' were abnormal for celiac all my blood tests were 'normal' so wasn't malnourished meaning i didn't in fact have celiac.  However bloods that my GP had previously done showed B12 'slightly low'. so my question is can you only have celiac if blood tests for deficiencies are also abnormal? i am more confused than ever as i thought that biopsy on its own was a definite way to diagnose and i cant find anything that says your bloods also have to show deficiencies?? i am still losing weight ( have dropped 3 dress sizes), am so tired i could sleep on the pavement and just don't know what to think-----any help or advise would be very much appreciated, thank you

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Mom-of-Two Contributor
Mom-of-Two
Posted

You need a new dr! :)

no7ang Rookie
no7ang
Posted
  • Author

yes, think your right--will see own GP in the morning 

so .............in fear of sounding totally ignorant (which i am in regards to celiac) bloods don't have to show deficiencies even if biospy has shown i have celiac? 

notme Experienced
notme
Posted

is your doctor telling you you're not sick enough to be sick?  if you have tested positive from biopsy, i (am not a doctor) would think that is positive for celiac.  is that what he tested the biopsy for?  false negatives in blood tests are common - depends on what specific test(s) they did.  do yourself a favor and get a copy of all your test results.  some of these doctors are clueless when it comes to the elusive celiac diagnosis.  i, too, was glad to not have cancer <which is what i thought i was dying of  :( welcome and good luck

no7ang Rookie
no7ang
Posted
  • Author

Thank you---- Consultant said that biopsy tested positive and i  do have villi damage he spoke about this in relation to celiac which is why im confused-- one of my main symptoms (amongst many) is weight loss but as my blood tests do not indicate that i am malnourished i.e. not vitamin deficient he said i dont have celiac---although has advised that i remain on prescribed nutritional drinks (that i now need to check for gluten)  will question own GP tomorrow re  bloods that he did which showed B12 to be a bit low as im sure i read that this can be a sign and not sure if there are varying ranges of 'normal'-  have not had blood tests to specifically look for celiac though, am more concerned that i will not have access to follow up health checks/dieticians etc or do i not need to? i think that today has been a lot to take in and i have loads to learn---am going to start with plain diet initially--meat, veg fruit fish and see how i go---hopefully will get braver as i learn but its all a bit unknown right now

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

I would suggest showing your doctor this link:

 

Open Original Shared Link

no7ang Rookie
no7ang
Posted
  • Author

thank you--after doing a bit of internet research this evening it would appear that many medical proffessionls are not aware of the many sides to celiac--which is why i am thankful that i have found this site (as daunting as it all seems to initially be) am sure i will eventually get there and this initial feeling of panic will pass. So a big thank you

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nvsmom Community Regular
nvsmom
Posted

Hmph. I am a celiac who had a positive blood test (no biopsy) but I have no nutritional deficiencies - I even exceeded the limit in vitamin B12. Don't listen to the doctor, keep doing your own research on this. And good luck with the gluten-free diet. :)

Mom-of-Two Contributor
Mom-of-Two
Posted

Many people do NOT have ANY nutritional deficiencies at time of diagnosis--- this is a GOOD thing. Changing your diet now, you should have an easier time keeping your nutrient levels adequate, and getting that villi damage healed. I was told I was likely celiac my whole life, and had no malabsorption of nutrients, never been thin, and didn't have "classic" symptoms,

Good luck!

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