Celiac And Appropriate Diagnostic Methods

[gardinersara]

Hello -

I estimate having had celiac disease for almost 9 years before an accurate diagnosis was made last spring. Life was very difficult up until starting a gluten-free diet. My question has to do with the diagnostic methods commonly employed among gastroenterologists. I came up negative on 2 celiac antibody panels and was told I have IBS. After extensive research on my own and through contacting physician "thought leaders" on celiac disease, I learned that a true diagnosis can only be made if one experiences complete remission of symptoms after beginning a gluten-free diet. Are most GI-specialists aware that this is truly the "gold standard" of diagnosis - as opposed to the antibody panel or the intestinal biospy? A biopsy can be negative if the one fails to sample the correct area. Either test can be negative if the celiac has already altered his/her diet. Have others with celiac disease come up negative on either the antibody test or the biopsy?

SARA

[MySuicidalTurtle]

My Mother came up Negative. However, since my brother and I both tested positive the doctor said that she most likely had Celiacs, as well. She went on the diet and has been much better.

I do think that people should be tested before trying the diet. Once tested, then should try to see if the diet helps.

[tom]

False negatives on the bloodtest happen ALL the time.

For celiacs w/ only "partial atrophy" of the villi, one study showed 2/3 of them tested negative. Even celiacs w/ TOTAL villous atrophy had a false negative bloodtest in 23% of cases.

https://www.celiac.com/st_prod.html?p_prodid=1023

[tarnalberry]

One reason why doctors don't want to rely on a result from a diet is because it's completely subjective - not only can you lie about the results, but psychosomatic effects can play a role more easily than they can with laboratory tests. I'm NOT arguing that this is a GOOD reason, just noting that it is one. ;-)

[Twister2]

Hi there! Im my experience with the medical community (GI specialists included), little seems to be known for certain about Celiacs. I tested negative serologically the first time I asked to be screened for Celiacs. Then in October I had positive antibodies and a negative biopsy despite every symptom in the book. Not to mention a mother and two sisters with it. I have often had to share information with doctors about Celiacs and even suggest treatment options (screening for vitamin diffencies and supplementation ect) It's quite discouraging at times to see the lack of knowledge in the medical community, despite the high incidence rate of this disease. I am certain I am not alone when I say that I have left doctors offices on several occasions thinking I was psychologically manifesting my symptoms.

I feel that too much emphasis is placed on intestinal damage. Malnutrition affects your entire system, albeit intestinal damage is most common though not easily diagnosed in every case. Several of my symptoms are neurological, and not once has anyone suggested am MRI to rule out MS or serology to test for Lupus to be sure this is Celiacs in my case. Humm..if only there were more "Celiac" doctors.

Until then, I guess we just keep educating ourselves and eat what we know makes us feel better and hope someone famous gets Celiac's so we can get some more funding for research! (kidding) I wouldn't wish this on ANYONE!!!