Biopsy Results Back, Vili Inflammation, No Celiac Evidence

[Coconutmilk]

Hello,

So i have been for my biopsy results today, Dr said biopsies only showed up some inflammation of vili. Im quite shocked and in a way upset, i really thought i had it and was prepared to start feeling better!. So he suggests irritable bowel and is going to contact my GP to put me on some medication. The thing is my blood results were positive, im not sure what they are testing for here in the uk but the average is below 5 and my result was 17, which to me sounds high.

So i was wondering is anyone familiar with the UK blood test they do? if so, why might it have been positive if not celiac? could it mean anything else?

I didnt want to be put under heading of IBS as i felt some people i know may have thought i had been complaining abut nothing but iv read up on it and have decided on paying to get a full food intolerance check to see if i can make my self feel better. Im sick of stomach pain, bloating, wind and constipation making me feel worn out and down.

So on a whole i am pleased there is nothing sinister going on inside my bowel, just wish i could get some answers and feel better. Thanks for your support in my other posts.

Any advice would be appreciated and info on UK blood test.

[Gemini]

Hello,

So i have been for my biopsy results today, Dr said biopsies only showed up some inflammation of vili. Im quite shocked and in a way upset, i really thought i had it and was prepared to start feeling better!. So he suggests irritable bowel and is going to contact my GP to put me on some medication. The thing is my blood results were positive, im not sure what they are testing for here in the uk but the average is below 5 and my result was 17, which to me sounds high.

So i was wondering is anyone familiar with the UK blood test they do? if so, why might it have been positive if not celiac? could it mean anything else?

I didnt want to be put under heading of IBS as i felt some people i know may have thought i had been complaining abut nothing but iv read up on it and have decided on paying to get a full food intolerance check to see if i can make my self feel better. Im sick of stomach pain, bloating, wind and constipation making me feel worn out and down.

So on a whole i am pleased there is nothing sinister going on inside my bowel, just wish i could get some answers and feel better. Thanks for your support in my other posts.

Any advice would be appreciated and info on UK blood test.

If your villi and small intestine are inflamed and you have a positive blood test for Celiac, you still may have it so don't totally believe what this doctor is telling you. You have to understand that if they don't find atrophy, they will tell you you do not have Celiac.....that is the only protocol they use, period. You may be in the early stages of Celiac and your villi may not be really bad as of yet, which would be a good thing. Also, they could have missed area's of atrophy, which is a common occurrence. Do you know how many samples they took during the endoscopy? That is very important....the more, the better.

I don't think the testing in the UK is that different than here in the States. Do you know which tests were run as that information would be helpful.

You have a choice here....do a gluten-free dietary trial and see how you feel. If your problems clear up, then I would say you have your answer. I would not take any medication they want to give you until you do a dietary trial because that could just mask your symptoms, which will come back down the road. IBS is not a diagnosis.....it's a general term used to describe a problem with the bowel. They never seem to want to find out what that problem is and just medicate people!

Good luck!

[ravenwoodglass]

Please do the diet. If you had postive bloodwork and inflammation in the biopsy you really need to give the diet a good try. Geminii put it very well, there a lots of false negatives on biopsy, and on blood tests also. You have a postive blood test and you intestine definately doesn't like something your giving it. My bet would be that you are one of the family. There is also the chance that with your blood tests and the iffy results on the biopsy that if you go on the diet and it does away with your health issues that your GP may diagnose you officially.

[Coconutmilk]

Hello,

thank you for your replies.

The test was to check for antibodies that are usually present if you have celiac disease, im sorry i dont know which ones for. I think its a standard blood test the GP does in the UK.

Im going to have a full food intolerance test, it costs quite alot but i think that if it comes back with gluten i may go private for another biopsy. The DR took four samples when i had the biopsy and by the way he spoke yesterday i dont think he has any intention of checking again.

My mum and Nan have had bowel problems and chronic pain for years and im worried of suffering complications through it being undiagnosed.

The thing is i started a gluten free diet last week. I have been extremely careful and not had any gluten, yet everynight i was suffering really bad with bloating, wind and pain, should this have been the case?

Thanks again

[ravenwoodglass]

The thing is i started a gluten free diet last week. I have been extremely careful and not had any gluten, yet everynight i was suffering really bad with bloating, wind and pain, should this have been the case?

Thanks again

Are you eating fresh unprocessed foods or have you added in gluten free goodies? If you have been eating a lot of gluten free baked goods back off for a while. If any of those products have codex wheat starch in them stay away from that completely as most of us will react. Also do you live with other folks who eat gluten? If you do there are precautions you need to take. You need you own butter, nut butters and other condiments that folks will dive a knife into. You need a new dedicated gluten-free toaster, wooden or porous item that you used before should be replaced, like cutting boards and wooden spoons. Also have you dropped dairy for now? You should until you heal and then you may be able to add it back in. It does take some time to heal. Feed your body fresh unprocessed foods and be sure to check all meds, script and OTC, supplements and be wary of it in stuff like lipsticks etc.

[wildwood]

My daughter had positive blood work and two negative endoscopies. She had gene test and has dq2. She went gluten free based on blood work and has been diagnosed due to her overwhelmingly positive response to the diet. If I were you, I would follow the advice of the others and go gluten free for a month or so and see how you feel on the gluten free diet. That may give you your answer. I still find it troubling that endoscopy is still considered the gold standard for diagnosis.