Formal Diagnosis: Is It Worth It?

[rdunbar]

Hi Donovan. I live nearby you in fairfax !

I'm glad that you got it figured out with the gluten free diet, and you are seeing results. That really seems like the real gold standard to me, getting better off of gluten , and then having it confirmed when the symptoms come back with an accidental glutening. It's really glaringly obvious once you learn how all the various symptoms are all connected by their trigger which is gluten ( / casien) and it is your body, only you know how you feel . A biopsy is like taking a small sample from a huge surface area ( the small intestine is the size of a tennis court) and saying now you know what's going on there!

your stories about the doc wanting to do a biopsy after a positive blood test and putting you back on gluten is startling; I am self diagnosed and completely gluten and cc free now almost 6 months. I'm doing much better, especially my mood, and my guts feel better, less aches and tingling.I've been thinking of finding a doc to get my thyroid tested as well as checked for lymphoma and to get my vitamin levels checked, but to tell you the truth, Im not sure how to proceed. I've had some bad experiences getting this far, so I'm a little sceptical and hesitant about finding a suitable doc. Let me know if you find one! I have zero doubts about my own sensitivity to gluten with no blood test, and you couldn't even get me to eat gluten for a gluten challenge if you held a gun to my head! I have dermititas herpetiformis, and it's slowly getting better, but it is so painful and just drives you crazy, so I am just desperate for it to finally go away,

[quincy]

Hi Donovan. I live nearby you in fairfax !

I'm glad that you got it figured out with the gluten free diet, and you are seeing results. That really seems like the real gold standard to me, getting better off of gluten , and then having it confirmed when the symptoms come back with an accidental glutening. It's really glaringly obvious once you learn how all the various symptoms are all connected by their trigger which is gluten ( / casien) and it is your body, only you know how you feel . A biopsy is like taking a small sample from a huge surface area ( the small intestine is the size of a tennis court) and saying now you know what's going on there!

your stories about the doc wanting to do a biopsy after a positive blood test and putting you back on gluten is startling; I am self diagnosed and completely gluten and cc free now almost 6 months. I'm doing much better, especially my mood, and my guts feel better, less aches and tingling.I've been thinking of finding a doc to get my thyroid tested as well as checked for lymphoma and to get my vitamin levels checked, but to tell you the truth, Im not sure how to proceed. I've had some bad experiences getting this far, so I'm a little sceptical and hesitant about finding a suitable doc. Let me know if you find one! I have zero doubts about my own sensitivity to gluten with no blood test, and you couldn't even get me to eat gluten for a gluten challenge if you held a gun to my head! I have dermititas herpetiformis, and it's slowly getting better, but it is so painful and just drives you crazy, so I am just desperate for it to finally go away,

I was recently diagnosed at age 48 and was shocked. I wound up having a biopsy before a blood test because I had not even heard of celiacs. I assumed an ulcer and gerd like the rest of my family.

I have not read all of the posts here so perhaps this was said already. My advice would be to get tests for all of the possible negative outcomes, especially get a bone density test. I was also shocked to find out my Vit D levels were very low and my bone density test confirmed Osteopenia. I have lifted weights all of my adult life too. So make sure all of your mineral and vitamin levels are good and that way the biopsy is not necessary if you know that your absorption has been bad. if so then you can assume damage to the villi has already occurred.

[SaraKat]

I felt the formal diagnosis was important to see how bad the damage was and to see if there was anything else wrong. I also didn't have the typical GI symptoms where I felt very sick- I had some joint pain, which was really bad, but not totally disabling or anything.

My blood test was mid Aug and the endoscopy was 2 weeks later. So, I figured I could go 2 more weeks with the pain since I had been dealing with it for almost 1 year.

I go for my final biopsy results this Friday, but he told me the day of the endo that he saw some flattening and told me to start the diet that day.