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Member Since 03 May 2013
Offline Last Active Sep 15 2014 09:03 AM

Topics I've Started

Gastro Said I 'probably' Dont Have Celiac Desease? Please Read

08 November 2013 - 04:24 PM

Hi all, Just to recap from all thats been happening with me, I had positive blood tests for celiac desease and went for an endoscopy but that was normal. so my gastroenterology specialist said I do not have celiac desease and that I have gluten intolerance, I was really upset because I truly believed I had this and he was telling me I didn't have it, in that appointment he asked me to do a stool sample to check for inflammatory bowel desease, and I just received a letter saying the results were abnormal and the fecal calprotectin test showed that my bowels are probably inflamed :/ it had a result of 92 when the normal range for that test is between 0 to 50, does anyone know anything about this test and what this means if my result was 92, because it sounds scary, its a lot over 50 :( in the letter he wrote 'the evidence is that you still probably do not have celiac desease but you might have another condition causing your diarrhoea which might possibly be triggered by gluten-containing products. i would therefore like to organise a large bowel examination called a colonoscopy where we will take photos and biopsies afterwards if required. it might also be beneficial if you go back on a gluten containing diet for two to three weeks before the bowel examination.' 


I'm kind of in shock at this letter because in the last meeting we had, he was sooo sure that I 100% did not have celiac desease and that it was just gluten intolerance, but in this letter he seems not so sure.. hmm. So I 'probably' don't have celiac desease.. :( I'm confused, oh and I would like to ask what other conditions can cause my bowel to be inflamed that is caused by gluten? Because I've never heard of any other conditions, just gluten intolerance and celiac desease. also to anyone who has had a colonoscopy before, what is it like? does it hurt and should I ask for general anaesthetic because I had a really bad experience before when I was awake through my endoscopy :(


Also can someone please explain to me about inflammatory bowel desease, because I googled it and it said that its not just one desease, thank you very much for reading xx

Gastro Said I Dont Have Celiac Disease, I'm Crying, Please Help :'(

23 September 2013 - 11:47 AM

Hi everyone, I just had my gastroenteroligist appointment today and left the room crying, I felt like the doctor just didnt listen to me or take me seriously at all, he made me feel so small. he started off by saying that he has good news, that I dont have celiac disease because my biopsys came back normal, but when I asked him why my blood tests were positive, especially the endomysial antibody one, he said that there are always mistakes in science and that those results were wrong, and he even said that no-one uses the endomysial antibody test anymore because thats an old one, I've never heard that before :/ also he called celiac disease an 'allergy'. I told him I've been on the gluten free diet for 3 and a half months now and some of my symptoms are improving, and he said maybe I'm gluten intolerant. I felt like he was speaking to me rudely, because he kept saying we are going around in circles here, these are the results and thats that. and that he doesnt know what i want from him and I could tell he was getting annoyed, I even said to him that I'm sorry for asking so many questions but he just sighed. 

he now wants to test me for inflammatory bowel or something and has given me a fecal sample container to use.. I'm so unhappy all I wanted was a diagnoses but he just made me feel stupid for being there. he also said that Ive gained weight from the first appointment but that wasnt true at all because I have lost almost a stone since going gluten free, he couldnt even find my blood tests results on his papers so he had to look it up online, and he was trying to rush me out of the room. 

I've never felt so humiliated and depressed in my life, I feel the lowest I've felt in a long long time, please can someone give me any advice or just anything because I truly feel like giving up :( Thank you x 

I Got My Endoscopy Results Today, Help Please?

11 June 2013 - 08:46 AM

Hi everyone, I got my endoscopy report today and I think it's all normal, but I'll type it here what it exactly says, I'm not sure if this is the full report but this is the copy I was given by a nurse. Can anyone explain this to me please? Also I'm not sure what to do now because my blood test was positive and the endoscopy looks normal so does that mean I still have celiac? I don't know what to do :( I was hoping I would get a diagnoses from this, any advice would be great thanks all x






?coeliac disease.


Small bowel biopsy, D2


Multiple biopsies measuring 0.5mm to 2mm. 


Sections show small bowel mucosa with a normal villious/crypt architecture.

There is no significant increase of acute inflammatory cells in the lamina propria and increase in intraepithelial lymphocytes is not seen. Parasites have not been identified. 

There is no morphological evidence of coeliac disease in these biopsies. 


Duodenal biopsy: within normal histological limits.

End of report.



Marie ~

Bad Experience At My Endoscopy Today :(

29 May 2013 - 12:19 PM

Hey everyone, I had my endoscopy today and I actually feel traumatized now. I said I wanted to be sedated for my endoscopy and so they assured me I would not be aware of what was going on and that I wont remember anything, but I was fully awake and aware of everything that was happening and I remember every detail :'( they gave me the sedative called Midazolam and the throat spray called Lignocaine but for some reason the sedative didn't work on me and I was crying and trying to pull out the scope and the nurses were trying to stop me, I couldn't talk or say stop and I didn't know what to do :( and because I was trying to pull out the scope the nurses said they were trying to press the 'call button' because it was an emergency and before I knew it everyone was holding me down and then they took the camera out. it was such a terrifying experience.


After the procedure they said they only managed to take 4 biopsies but they didn't get a clear view and said that the bits they could see looked normal. On the letter it says all sites from the oesophagus to the distal duodenum were examined, and looked normal. I remember them telling me my blood pressure dropped and they were worried but then it went up again so I had to stay a few hours later to make sure I was okay. I was told I would get my next appointment for the results in about 6 weeks time so I will have to wait and see, but what are the chances of them diagnosing me with only 4 biopsies? 


I feel so sad, has anybody else had any similar experiences with endoscopies? and will I still have a chance at being diagnosed after what's happened? Thankyou


Marie ~

Celiac And Thrush?

07 May 2013 - 11:43 AM

Hi everyone, I was wondering if there is any connection between having celiac disease and thrush? I've had vaginal thrush for about 2 years now that I can't get rid of and I've tried many medicines etc but nothing has worked. :( Does anyone else have this problem with celiac and thrush? and any advice would be great :) Thanks, Marie ~

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