So I had a blood test not long ago and have tested for Coeliac disease and it came back as I have it, I do not want to have a endoscopy I am absolutely petrified do I have to have one or can I have another blood test.
I really don’t want one and just want to go gluten-free and get on with it.
I would do the endoscopy if I were you. I think it’s better if a complete diagnosis is on your medical record.
It's really not as bad as it sounds and the staff will really look after you and it'll soon be over. There's one of the Channel 4 Know Your Sh!t programs, maybe the last one, that shows a guy having one and how relaxed he is. You may even get the chance to see the images on the screen which really helps understand what is going on inside you but not in a horrible way.
Good luck
My bloodwork came back positive for Celiac. I also suffered from its accompanying skin disorder Dermatitis Herpetiformis or DH, and also Hashimotos. When I stopped eating all grains, anything with soy, anything containing yeasts or molds and anything high in iodine, the DH blisters disappeared and my health greatly improved. I never opted for an endoscopy and never will. I firmly believe that a change in diet, that improved my health, was all I needed to do without invasive and needless testing.
Since the only treatment is to remove gluten, and you don’t need physical confirmation to do that, I would personally skip the endoscopy as well. Especially if you stop all gluten and your symptoms improve, you will have confirmation of the diagnosis. Although I initially turned down the endoscopy, I eventually had one for some throat spasms I was having. They did biopsies at that time that came back clear, of course, since I had been gluten free for 4 months by then. It’s not bad. Sore throat for a day or two afterwards but one of the eaiser procedures I have had, so if you do decide to have one, you will be just fine!
Hi Rainbow9416.
Is there anyway you can discuss your concerns with your dr/Gastroenterologist?
You answered your own question when you said ‘I really don’t want one and just want to go gluten-free and get on with it.’ This is fine as long as you accept it, don’t go back on it. A gluten free diet is for life in Coeliac Disease.
At the end of the day it is entirely your choice whether to get a confirmation of diagnosis of Coeliac Disease. But just to be aware that positive blood tests are only suggestive of possible likelihood of Coeliac Disease. The gut biopsy is necessary to show Coeliac Disease. It’s possible for false positives and negatives on the blood test though usually false negative more likely. So two positive blood tests would be highly suggestive. Though rare there are other conditions that can cause a false positive - such as type 1 diabetes; rheumatoid arthritis, chronic liver decease for example but are usually transient.
Having said that the guidelines changed during the Covid Pandemic that if the blood test showed 10x the upper limit, in those under 55 years of age; then Coeliac Disease could be diagnosed without waiting for an endoscopy.
Useful info here: bsg.org.uk/covid-19-advice/...
Research shows that very high antibodies specific to CD do correlate with gut damage and the probability of a Coeliac Disease diagnosis.
Do you know your result numbers and the lab range?
The British Society of Gastroenterology have clear guidelines not yet updated on diagnosis of Coeliac Disease. This article may be useful:
bsg.org.uk/wp-content/uploa...
Hope this info helps you make an informed decision.
Also a confirmed diagnosis means you would be monitored by the NHS for associated conditions, nutrients status, bone health.
It’s understandable (as many on here can testify and offer first hand accounts and excellent guidance), that if you’re suffering symptoms and experience relief and remission from cutting out all gluten in the diet, that that knowledge is enough to make the switch to a gluten free diet and begin healing.
But it’s also not as straightforward for a lot. Gluten is only part of the story. The biggest part obviously in CD.
I would try to discuss your concerns with a dr/Gastro/Dietitian if you can.
Those are really good links and info. Thanks for sharing those.
I've read that some consultants are pushing to have a no-endoscopy diagnosis for those who have a positive blood test. If the blood test is positive, it's pretty much a given you have coeliac as the test needs good antibody level to work, and not everyone has enough for the blood test to register. I had negative blood test, never had endoscopy, too long gluten free to have one, but don't have coeliac on my medical records so don't get follow up appointments or the various annual tests/etc., that go with a definitive diagnosis (including dexa scans), and keep having to repeat 'coeliac' for every doctor everywhere as they look at me dubiously owing to lack of diagnosis. You have a sedation option for the endoscopy and most say they remember nothing. I'm really wary of all medical procedures, so totally understand where you are coming from. Might be useful to contact Ceoliac UK (if you are UK based), or similar if you are not UK based, to find out what the wriggle room is to have the diagnosis on blood test alone.
Wow thank you all so much for all your comments I really appreciate all of them I waiting for my number results to come back which hopefully should be Tuesday.
As consultant wise I am bypassing that for some reason and he is just referring me for the scan which is really bizarre as I know some people see a consultant first for some reason so I don’t know why I am not.
Once I get the results I will post on here the numbers as I am really interested myself in what they are.
I was also diagnosed for Celiac through blood work. I never had an endoscopy. I find those kinds of procedure invasive and if changing my diet improves my health that is all I need to know that I'm on the right path. But, everyone has to decide for themselves as to their personal health decisions.
Thank you everyone I spoke to the doctor and has he has requested I have some more blood work due to guidelines being changed and then hopefully I can be diagnosed without having an endoscopy so it’s a good job I asked as I don’t want to go through the whole procedure unless I have to.
blood test results
Blood test result
High Bilirubin on first blood test.
Ttgl blood test
Advice on blood test result
