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

Miss-Marie

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Miss-Marie Rookie
Miss-Marie
Posted

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 

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kareng Grand Master
kareng
Posted

Get a copy of all your blood work, the Procedure report and the pathology report. Read them. See if he even took any samples ( biopsies). He should take at least 4-6 of the small intestine. Get all those things and we can help you understand them. Do the test he wants and get that results in writing, too.

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Hi karen, thanks for the reply. I have copies of my blood testing and the endoscopy report etc, and the endomysial antibody test was weakly positive, and the ttg iga test was a 3. which he says was 'borderline', but im not sure what that word means, the person who did the endoscopy took 5 biopsys in total, and while I was having the procedure, I was pulling the tube out alot so the lady said she couldnt get a clear view in there :( x

kareng Grand Master
kareng
Posted

Hi karen, thanks for the reply. I have copies of my blood testing and the endoscopy report etc, and the endomysial antibody test was weakly positive, and the ttg iga test was a 3. which he says was 'borderline', but im not sure what that word means, the person who did the endoscopy took 5 biopsys in total, and while I was having the procedure, I was pulling the tube out alot so the lady said she couldnt get a clear view in there :( x

So what exactly are the blood tests, results and ranges? What does the pathology report say? Does it say 5 biopsies? Are they all of the intestine? None of the stomach? What are the pathologists findings?

I just want you to understand and be able to make informed decisions and ask good questions of the doc

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

I didnt get the ranges of the blood tests, just got a copy that said I had a ttg blood test which was 3 (borderline), and endomysial is weakly positive, sorry I'm not very helpful :( I was told there was 5 biopsies that were taken but have no idea which parts they were taken from. I will post here what the endoscopy form said: thank you

 

HISTOLOGY-V5

HISTOLOGY REPORT

HISTOPATHOLOGY REPORT

CLINICAL DETAILS

?coeliac disease.

SPECIMEN

Small bowel biopsy, D2

MACROSCOPY

Multiple biopsies measuring 0.5mm to 2mm. 

MICROSCOPY

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. 

CONCLUSION

Duodenal biopsy: within normal histological limits.

End of report.

kareng Grand Master
kareng
Posted

Love the exact number " multiple". You could be non celiac gluten intolerant. If the gluten-free diet makes you feel better, you can continue it but also continue looking for other issues.

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Thanks karen, I guess I could be gluten intolerant but the main thing that makes me think its celiac is the endomysial test, is there any way that I can still get a diagnoses now? ive heard of people getting a second opinion but i dont know how to go about that, and this appointment took over 4 months of waiting for it :( i dont know why its so difficult to get a diagnoses, its really bothering me, do you think there would be any doctors who specialise in celiac disease in england? because I really feel like my case needs to be looked into, and also I need to be diagnosed because gluten free food is so expensive, so if I could get a prescription for that it would help so much. I feel like I need a miracle lol. x

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kareng Grand Master
kareng
Posted

I am at the Intl Celiac Symposium. All the docs are using tTG. A doc just asked about why they aren't talking about EMA. They said that it isn't as specific and that you can get a slight positive one day and it is negative the next. I have no references but that gels with what your doc said.

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Is that a conference or something I'm not too sure what that means, thats interesting about the slight positive then negative the next day, I thought the endomysial antibody blood test was the best one out there, and that it was more specific than the others, i guess they are doing more research and seeing that its not that good? hmm 

SkyBlue4 Apprentice
SkyBlue4
Posted

You said you were gluten free for 3.5 months....were you on gluten when you had the endoscopy?

 

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Hi Skyblue, thanks for the post, yes I was eating gluten when I had the endoscopy and didnt start my gluten free diet till I'd had all my testing done. 

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

grrr i'm so sorry he made you feel this way  :(  Some doctors don't have people skills, and don't realize that the brief time they spend with a patient can have such a negative or positive impact.  I would get the additional test, but if he continues to treat you that way, pack your bags and find a new doc.  

 

the Maya Angelou quote always comes to mind in situations like this. "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

 

I hope you're feeling better!

 

 

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 

 

kareng, how about the one test I am continually hung up on...DGP?  Anything said specifically about that?  

 

 

I am at the Intl Celiac Symposium. All the docs are using tTG. A doc just asked about why they aren't talking about EMA. They said that it isn't as specific and that you can get a slight positive one day and it is negative the next. I have no references but that gels with what your doc said.

Kassia Newbie
Kassia
Posted

Hi Skyblue, thanks for the post, yes I was eating gluten when I had the endoscopy and didnt start my gluten free diet till I'd had all my testing done. 

 

From your doctor's perspective, not having celiac *is* good news. From your perspective, it's bad news. But based on your initial post, you are much improved on a gluten-free diet. If you take a step back, you'll realize your doctor -- who may not have the best bedside manner -- is telling you that while you may not have celiac disease, you may have non-celiac gluten intolerance. Also, while endoscopy biopsies are useful, they can only reach so far into the small intestine.

 

I think focusing on your health is far more important than getting a diagnosis of celiac. IBS, his next suggestion, is indicative of a problem; you still have to get to the root cause (I have a friend who was "diagnosed" with IBS, turns out she actually had Addison's disease). If eliminating gluten helps, that is fantastic. If you are still working through issues, focus on those. But please don't focus on getting the diagnosis you want because the bigger issue is getting well!

Miss-Marie Rookie
Miss-Marie
Posted
  • Author

Powerofpositivethinking - thank you, that's very true some doctors just don't know how to speak to people, I was waiting over 4 months for that appointment and got my hopes up about having a diagnoses I guess that's why I was so upset, I just wish I could have a confirmed and like proper diagnoses because its hard also when people ask me why I'm eating different food from them, like at family parties, and I have to explain that I 'think' I have celiac disease and not been confirmed lol, but I know that I definitely have a gluten problem so that alone will make me continue to eat gluten free, also the gluten free food is so expensive so its hard :( I'm going to do the test he wants me to do just so I will know if I have that inflammatory bowel condition but I know I don't anyway. x

 

Kassia - Yes I can see know when I think about it, but yesterday I just had got my hopes up about it, Ohh I have a question, does non celiac gluten intolerance cause the blood tests to be positive sometimes? and I was actually told I had IBS before the doctor thought of testing me for celiac disease lol, and then with the positive result, my doctor told me that I did have celiac disease and thats why I was so sure of it, but gluten intolerance seems to be the best I can get for a diagnoses. Thank you x 

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