Road to Diagnosis
The road to diagnosis of Celiac Disease or not is being a rough one.
When I first met my current Primary Care Physician I asked him to do the blood tests for Celiac Disease. He also ordered a bunch of other standard tests to get to know my body. So, I assumed it was done on that day. All I ever heard back on them was that I was fine. But, I didn't feel fine. So, I eventually did an elimination diet. It was the gluten for sure that scored as the culprit on that test. So, I just stayed off of it. Unfortunately, I should have gone back on the bad food and gotten tested. But, I thought I had been. Well, as I've been reading these past six months, you need to be eating the gluten to come back positive (in most cases) on the blood tests and the endoscopy, or else your body will heal and show no symptoms.
Well, when I returned to my doctor, a year later, yesterday I told him about being gluten free and how much better I feel. My anxiety is way down, no more digestive troubles, and I don't even twitch when I'm falling asleep anymore.
I am losing some faith in my doctor. He was curious as to how I could eat out with being off of gluten, and how I'd know what contained it doesn't. He also kept equating it with having to eat as a vegetarian, but vegetarians eat pasta. I don't.
He knew the names of some tests that he said detect the enzyme put off by the gene that causes Celiac Disease. I asked him if I would need to be eating the gluten containing foods, as all the tests I've read about (other than the Genetic test) say to eat gluten for four to six weeks before them if you're currently not eating it. He said no.
He also said that he doesn't like to order these kinds of tests because it could mess with my ability to gain health insurance in the future, or it might cause me other difficulties related to insurance.
So, when I came home last night I posted to the LJ Celiac Community. There are people in the community who have had their diagnosis for many years, and have had no problems. Someone said their sister couldn't get life insurance because of the diagnosis.
I also looked at the Celiac.com boards and some people say they have had issues with insurance, and some people say they haven't.
But, everyone says I need to be eating the gluten to get the test to come back positive. Even the National Institute of Health website says that.
I don't know what to do.
***EDIT***: I'm going to go get the tests done anyway this morning. I wont have the results right away, but if the insurance is paying for it I might as well do it. Then I'll fight with my doctor about it.
When I first met my current Primary Care Physician I asked him to do the blood tests for Celiac Disease. He also ordered a bunch of other standard tests to get to know my body. So, I assumed it was done on that day. All I ever heard back on them was that I was fine. But, I didn't feel fine. So, I eventually did an elimination diet. It was the gluten for sure that scored as the culprit on that test. So, I just stayed off of it. Unfortunately, I should have gone back on the bad food and gotten tested. But, I thought I had been. Well, as I've been reading these past six months, you need to be eating the gluten to come back positive (in most cases) on the blood tests and the endoscopy, or else your body will heal and show no symptoms.
Well, when I returned to my doctor, a year later, yesterday I told him about being gluten free and how much better I feel. My anxiety is way down, no more digestive troubles, and I don't even twitch when I'm falling asleep anymore.
I am losing some faith in my doctor. He was curious as to how I could eat out with being off of gluten, and how I'd know what contained it doesn't. He also kept equating it with having to eat as a vegetarian, but vegetarians eat pasta. I don't.
He knew the names of some tests that he said detect the enzyme put off by the gene that causes Celiac Disease. I asked him if I would need to be eating the gluten containing foods, as all the tests I've read about (other than the Genetic test) say to eat gluten for four to six weeks before them if you're currently not eating it. He said no.
He also said that he doesn't like to order these kinds of tests because it could mess with my ability to gain health insurance in the future, or it might cause me other difficulties related to insurance.
So, when I came home last night I posted to the LJ Celiac Community. There are people in the community who have had their diagnosis for many years, and have had no problems. Someone said their sister couldn't get life insurance because of the diagnosis.
I also looked at the Celiac.com boards and some people say they have had issues with insurance, and some people say they haven't.
But, everyone says I need to be eating the gluten to get the test to come back positive. Even the National Institute of Health website says that.
I don't know what to do.
***EDIT***: I'm going to go get the tests done anyway this morning. I wont have the results right away, but if the insurance is paying for it I might as well do it. Then I'll fight with my doctor about it.