Unsure On Diagnosis

[lovelovetara]

Hey guys,

I'm new to this forum. Im from Sydney Australia. 2 years ago i was diagnosed with Coeliac. Up until about 6 months ago i hadnt actually seen my test results but we found them in a file. On my endoscopy results the dr has written "Likely coeliac?" with question marks. He stated the stomach etc. was normal, villi appeared a little bit flat. My blood results showed a slight raise. I haven't had the genetic testing done i went back to my GP yesterday (a new GP as i have moved since diagnosis) and told her about the results as a naturopath im seeing suggested getting the genetic testing as the endoscopy results seemed inconclusive. The GP i saw didnt think it was necisary to get the genetic testing as no one we know of in my family is coeliac. So im a little confused... also prior to diagnosis, growing up and even before diagnosis i never had any stomach issues or diarroeah or trouble with food of any kind. I grew up eating loads of pasta, breads, garlic bread, mcdonalds - you name it! Never had a sick day. Now i know there are things stating you can be asymptomatic but the GP i saw said there would have been some signs or indications, the reason they did the tested me in the first place was because my iron was a little low. The GP i saw yesterday has pretty much said looking at the endoscopy results it looks like im probably not coeliac as it should be a definite diagnosis.

Has anyone had this sort of confusing diagnosis? I have been eating gluten free since be diagnosed i feel no different as i wasnt feeling sick before and i have experienced a lot of acne break outs since going gluten free. Let me know if you guys have any opinions lol 

 

Thanks
Tara

[nvsmom]

Welcome to the board.  

 

Was it just an endoscopy that you had done or did you have blood tests as well?  If you have a bunch of tests done, including endoscopy, it can sometimes make the results a little bit more clear.  That being said, I would say the majority of the people on this forum joined because of testing confusion - it is very very common.  Quite a few celiacs have only mildly positive tests, or have some tests positive while others are negative.  We even have members who have celiac disease even though their genetic tests were negative (only 97% of celiacs hav ethe DQ2 and or the DQ8 genes).

 

If you have your endoscopy report, many people around here are quite knowledgeable in the medical jargon and can probably help you interpret them or even show you how celiac damage is classified. Same thing with your blood tests.  Generally with the blood tests, a positive means celiac disease at least 95% of the time. I liken the tests to pregnancy tests - a positive is a positive although false negatives aren't uncommon.  Most celiac disease blood tests are quite specific for celiac disease.  Take a look at this report, pages 10-12, for more info on the tests and how good each test is: Open Original Shared Link

 

Your GP is wrong on the asymptomatic thing. Asymptomatic means asymptomatic. Period.  And you do have a symptom: low iron.  I bet you have other common celiac issues like anemia, low B12, low D, fatigue, etc.  Remember that deficiencies can take years to improve on the gluten-free diet, and when it is over such a long time frame, we can miss improvements... I did.

 

If you do decide to retest make sure you are eating 1-2 slices of bread per day in the 2-3 months prior to testing, and get as many tests done as possible (ttG, DGP, EMA).

 

Best wishes.