I Got My Endoscopy Results Today, Help Please?

[Miss-Marie]

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

 

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.

 

 

Marie ~

[Cara in Boston]

Think of it this way, celiac damage was "not found" . . . it does not mean you don't have celiac.  The damage could have been missed.  Perhaps you are in the early stages and the damage is not yet measurable.  There are lots of reasons for a "negative" biopsy.  Unfortunately, some doctors won't give you a diagnosis without a positive biopsy. 

 

I had all the classic symptoms, a positive blood test, a child diagnosed with celiac disease, and a positive reaction to the gluten free diet.  My GI said I didn't have celiac disease because my biopsy was negative.  When I asked how he would explain the positive blood test, he said, "I don't know, lab error?"  Really?

 

I've been gluten free for over two years now and feel great.  I get very, very ill with even the smallest amount of gluten (accidental) is eaten.  Much more sever then my pre-gluten-free symptoms ever were.

 

Don't let your doctor convince you that you can safely eat gluten based on your biopsy alone.  Why would believe the results of one test, and disregard the result of another?  Do you have symptoms?  Do they go away when you stop eating gluten?  Think of the trial diet as the "final" test.

 

Cara

[notme]

false negative blood tests are common.  false positives are not.  frankly, if my blood test had been positive (and i knew then what i knew now) i wouldn't have even bothered with the endoscopy.  get yourself off gluten and thank your lucky stars you don't have damage to your intestines yet!  

[Miss-Marie]

Thank you cara and notme for your replies, I have another question about the report - you know where they said there is no 'significant' increase in acute inflammatory cells, does that mean there was inflammation in my bowel? but not much? that bits confusing, also when they said small bowel mucosa, is there supposed to be mucosa in the small bowel? 

 

I tested positive for the endomysial antibody blood test which is very accurate i hear, So I think I still have celiac too, I'm considering going back to my doctor and asking for a full celiac blood panel and that genetic test just so I can have all the tests done and know for sure. my next plan is to start the diet and see if it helps. Yes I do have many symptoms, they are bloating everyday, constipation, diarrhoea, gassy, really bad belly pains everyday especially after eating dinner, i feel extremely sick every day also, im always pale and ill looking, ive had thrush for the last 2 years which wont go away (not sure if related but I heard it might be), urgency to go to the loo and many other symptoms, ive just been diagnosed with acne rosacea also (not sure if related). Im worried that when I go back to the Gastro doctor he might just say I haven't got celiac now im glad to hear youre feeling better cara. x

 

Notme, thankyou I will try out the gluten free diet next and see how it goes x

[Cara in Boston]

The genetic test may help or it could add to the confusion.  My son (diagnosed with positive blood test and positive biopsy) had the genetic test done by his first GI . . . it showed he wasn't likely to have it and this made the doctor convinced he didn't have it (no GI symptoms either) so in our case, it made matters worse.

 

The other blood tests could come back negative as well.  That is why they give a panel of tests, some people react one way, others a different way.

 

All my IgA tests were positive, IgG negative.  For my son, it was the opposite.

 

Maybe you have an enlightened doctor who will diagnose you based on your blood test alone.  The good news is, you don't need a doctor's permission to eat gluten free, so it really doesn't matter what the doctor says.  If you can, make sure you are seeing a doctor who is up-to-date on celiac disease.  

[Miss-Marie]

Hi Cara, I think I'll try and get all of the celiac blood tests that I haven't had yet and then if any of them are positive it may make the doctor more likely to diagnose me? Well hopefully. My doctor seems to know about celiac disease but I don't know if he will give me the diagnoses, I'm really hoping he will so I would receive nhs prescriptions for the diet which would help bring the cost down because its so expensive x

[1desperateladysaved]

A person I know recently had a Quest Celiac Panel.  This included a check for Vitamin D, total iron, and calcium.  I guess they must think that nutrient levels can help to determine celiac.

[Celiac Mindwarp]

I struggled to anything other than the basic panel in the UK, and they didn't tell me which tests I had.

 

If you manage to get the full panel here, I'd love know!

[Miss-Marie]

The only nutrient blood test I've had done was an iron test and my iron levels turned out to be low. I'd like to have all my vitamins tested but I don't want to ask my gp for too much or they might get tired of me lol. I have an appointment to see a nurse tomorrow and I'll ask her if she can give me blood tests for the celiac blood panel and the genetic test. I hope she will give me them because im planning on getting a copy and bringing them to my next gasto appointment so thats like proof then, also I'll be a few weeks into the diet by the time I see him so I hope I have some good signs of getting better and that will be kinda like my evidence, I really hope I will get a diagnoses.

 

They didn't tell me what tests they gave me either Mindwarp, I just saw two positive test results on a gastro letter randomly, but I'll be asking about the blood tests tomorrow, I'll let you know what happens on here!

[Celiac Mindwarp]

There is a pretty standard set of tests that are normally done for nutrients alonside the one for celiac I think. Mine were done at the same time as the celiac ones. It should be a broad spectrum and include B12. My genetic one took about 6 weeks to come back.

 

Even if you don't end up with a diagnosis, it is worth hanging around here  if you have a gluten problem. Plenty of us are NCGI or self diagnosed, and benefit from a gluten-free diet.

 

Good luck with tomorrow, let us know how it all goes

[Miss-Marie]

Hi Celiac Mindwarp, I had my appointment and she looked through all the celiac tests that I've had and said I've already had the whole celiac panel already. I didn't know because I wasn't told lol, she said everything was normal except the endomysial one was positive and the ttg one. I'm glad I've had them done so I don't need to now, but she said something that confused me, she said that the genetic test is the whole panel, that all the celiac tests are genetic ones, I'm not too sure what she meant but I guess I'll start that diet next and see what happens