How Can Doctors Not Know

[Tammy Dudley]

This past fall I was tested for celiac disease and the doctor said I don't have it. All of my symptoms say I do. I went off of gluten for 2 weeks and my symptoms all but mostly disapeared. How is it that they can tell you no you don't have a problem when clearly a person can almost diagnose themselves?

[Wolicki]

TAmmy

testing for Celiac is not precise. There are many false negatives. You could also have non Celiac gluten intolerance. Same thing though, the cure is a life long gluten free diet. If it works for you, go with it. Doctors will catch up some day.

janie

[bluebonnet]

from my own reading and learning about celiac through various books, websites etc. the concensus seems to be that many doctors don't know because there is not as much research being done due to no money/interest in pharmecuetical companies? there are doctors out there willing to help though. best wishes!

[ksangie]

I tested negative for celiac back in '06, through both blood and biopsy. Well, it turns out the just tested EMA and I'm IGA deficient, so throw that out! They also biopsied the large intestine (as we all know it should have been the small intestine!!) Fast forward four years and I have a doctor that knew what to order (the FULL celiac panel) and a GI who is willing to (after seeing IGG of >100) do the biopsy right! Doctors are not gods, even if some think they are. If the diet is working for you, stick with it. I wish I hadn't thought the doctor was right so many years ago!

[Johnstan]

I agree. If the diet is working, don't question it, stick with it. You are the only one that truly has to live with the symptoms. Trust your instinct.

[reeetz]

Tammy, I am having the same problem right now! I was also told that I would be tested for Celiac (through a colonoscopy) which came back negative. Although I should have been having my small intestine tested! Of course it came back negative! The doctor didn't even run the blood panel to test, he just said that he thinks my symptoms are too severe and that there is no treatment for Celiac so it's not that. Going on a gluten free diet is the ONLY thing that has helped me. I feel about 90% better now and have been on the diet for 4 weeks. Still have some bad days though. I am going to see another doctor next week to see what she says though. But if the diet works, the diet works. Don't make yourself sick because doctors don't always know everything.

[sandsurfgirl]

Tammy, I am having the same problem right now! I was also told that I would be tested for Celiac (through a colonoscopy) which came back negative. Although I should have been having my small intestine tested! Of course it came back negative! The doctor didn't even run the blood panel to test, he just said that he thinks my symptoms are too severe and that there is no treatment for Celiac so it's not that. Going on a gluten free diet is the ONLY thing that has helped me. I feel about 90% better now and have been on the diet for 4 weeks. Still have some bad days though. I am going to see another doctor next week to see what she says though. But if the diet works, the diet works. Don't make yourself sick because doctors don't always know everything.

Every doctor who says there is no treatment for celiac should lose their license. That is appalling and every time I read on here that a doc said that I want to scream. There is a treatment. Gluten free diet. Just like the treatment for peanut allergy is no peanuts, or dairy allergy is no dairy. He should not be practicing medicine.

[CarolMil]

This past fall I was tested for celiac disease and the doctor said I don't have it. All of my symptoms say I do. I went off of gluten for 2 weeks and my symptoms all but mostly disapeared. How is it that they can tell you no you don't have a problem when clearly a person can almost diagnose themselves?

I am going thru this as well. My Dr. has celiac. She tested me in 2003, and I was negitive. So I lived my life sick all the time and figured I had no choice... I started reading about having a gluten intolarance and gave up gluten. I was like I waived a magic wand and was cured. I went back to mr Dr. and told her, and she agreed that o have an "intolarance".

With that said if you feel better give it up!!!! Yes it's a HUGE life change, but it sure is amazing to feel cured!!!

[nixie-nox]

from my own reading and learning about celiac through various books, websites etc. the concensus seems to be that many doctors don't know because there is not as much research being done due to no money/interest in pharmecuetical companies? there are doctors out there willing to help though. best wishes!

That actually doesn't surprise me as the cure is easy, diet change. There is no money to be made for pharma.

UNLESS, they wanted to come up with a gluten blocker pill that would let celiacs eat gluten. *smiles*

[nixie-nox]

I am not bashing doctors but lately I wonder what they would of done if they didn't have blood tests. How did they ever diagnose anyone before blood tests? I h ave had wacky symptoms and tests lately on different levels but one little test comes up and I am declared as nothing wrong. My mother prompts me to ask: if there was no such thing as blood tests, what would you think?

The doctor I have come to trust the most? Pediatrician. They always seem to nail it and barely look at my kid. I went to my doc and the er when I was vomitting for days and felt like death warmed over. I got a stomache virus. I brought my kid in, told her the symptoms. She goes: lyme disease. Went back to my doc for tests, we both had lyme disease. She got my full respect.

Sorry, little tyrade.