Diagnosis

[nothing but nicole]

I have already had an upper endoscopy, a flexible sigmoidoscopy and multiple blood tests ran. Now my Dr. wants to do a full colonoscopy to make sure I dont have Crohns disease. I have been reading some very contradictory information on the internet and am confused. I have constant nausea (I was also told I have an ulcer), skin problems but just on my arms and legs around my elbows and knees, and am constantly gassy along with a few other symptoms. Everything points to Celiac and my Dr. told me that he thinks that is what I have, however when my sister called her Dr. to be tested for the gene her Dr. literally laughed at her and said that the disease is often misdiagnosed. The Dr that I have been going to is very thorough and has already sent me to get my vitamin levels tested, to a dermatologist, to have a bone scan, and to a dietitian. The information the dietitian gave me says not to start a gluten free diet until you have been fully diagnosed and that information comes from the american dietary association (or what ever it is called), I have also found like information on the internet. I don't know what I should do for the next week until I have to colonoscopy but I think that with the tests already ran the Dr. should have a diagnosis. Or am I being too critical? I was thinking about easing myself into the gluten free diet over the next week, that way by the time I have the colonoscopy I will be ready to give it up. Any comments or ideas regarding my situation would be greatly appreciated!

[Ursa Major]

Did your doctor take multiple biopsies while doing the endoscopy? Unless he did that, you won't really know if it's celiac disease.

Your sister's doctor is as ignorant as most doctors when it comes to celiac disease. Celiac is seriously underdiagnosed thanks to doctors like that. He is very wrong when he says that celiac disease is often misdiagnosed.

What happens most of the time is that we get misdiagnosed with everything under the sun, when in reality we have celiac disease.

Tell your sister she may have to find herself another doctor, who takes his patients seriously, instead of laughing arrogantly at their concerns. She has every right to ask for a celiac disease blood panel if she thinks she may have celiac disease. Doctors need to finally realize that they are supposed to be SERVING the patients, because they are the ones who pay them. And that if they fail to respect their patients, they may soon have to find themselves another job, as their patients will find themselves better doctors.

[nothing but nicole]

Did your doctor take multiple biopsies while doing the endoscopy? Unless he did that, you won't really know if it's celiac disease.

Your sister's doctor is as ignorant as most doctors when it comes to celiac disease. Celiac is seriously underdiagnosed thanks to doctors like that. He is very wrong when he says that celiac disease is often misdiagnosed.

What happens most of the time is that we get misdiagnosed with everything under the sun, when in reality we have celiac disease.

Tell your sister she may have to find herself another doctor, who takes his patients seriously, instead of laughing arrogantly at their concerns. She has every right to ask for a celiac disease blood panel if she thinks she may have celiac disease. Doctors need to finally realize that they are supposed to be SERVING the patients, because they are the ones who pay them. And that if they fail to respect their patients, they may soon have to find themselves another job, as their patients will find themselves better doctors.

My Dr. did do a biopsy but didnt tell me anything regarding the biopsy, I know that he biopsied my stomach and my small intestine from the paper work he gave me but really dont know much else. He told me on my last visit that he suspects celiac because of the way my colon looks (it looks like bubble wrap) and that wasnt based on much else as far as I have understood. All the information I have read says not to start the gluten free diet until you have been fully diagnosed as it can be very taxing. I am just very confused by all the information coming my way and hope that with my next few Dr. visits they can truely figure it out!

I was also very frustrated with my sister's Dr. as we have a sister that has Celiac (she has down syndrome and apparently that is common) and her Dr. told her that and laughed at her when provided that information. I have other issues with that Dr. anyway, they wouldnt take me on as a patient when my problems started and I was left to find a gastroenterologist by myself. Thank God my other doctors have been awesome in helping me!