Why Do Some People Feel They *must* Have An Endoscopy?

[Roda]

In order to qualify for the medical expense itemization you have to have had an exceptionally unhealthy year, one that you would not wish to have in order to qualify

Isn't that the truth?! However, I do have decent insurance so that's good. Hopefully they don't jack my rates so high that I can't afford it any more. I'm happy with my private insurance and don't want the government plan if it comes to pass.

[Linus]

I found out with endoscopy first (did not expect it due to few symptoms) and a follow up blood test. My daughter has it too. I needed a diagnosis officially for any concerns regarding her school. An official diagnosis in my opinion should end at a blood test.

One advantage to a diagnosis is a tax write off for the cost differential in gluten free foods. If your medical costs are over the threshold, you can start deducting. It is a lot of work, and not worth it individually. As a family it makes since.

Sometimes other family members need proof of the desease (not in the head).

[Roda]

I wanted the biopsy because I thought that is what I should do after positive blood work(biopsy was positive). I also wanted to rule out any other issues too.

My youngest son had positive blood work, but we did not do a biopsy on him. I am considering gene testing to get his "official diagnosis."

My oldest son has had negative blood work for the past three years. I debated on trying him gluten free for about two years. I couldn't bring myself to commit him to it in light of the negative testing. In Aug. we did consult with a GI and had a scope/biopsy done to see what may be going on or if he was possibly a seronegative celiac. Nope it was negative. However, I don't regret exhausting all the testing on him. It actually helped me in the decision to trial him gluten free. I know I will not get a diagnosis on him, but that's alright. At least we went through the process. I'ts been three months now and he is doing great. Gluten definately bothers him, now matter what you call it. I suspect if he was to continue down the gluten road he probably would develop full blown celiac as an adult. Just my thought.

[Katrala]

But we know that it's not true that a neg biopsy doesn't mean you aren't celiac:)

That is true.

It's also true that just because you feel better when you don't eat gluten doesn't mean you *are* celiac.

There are a variety of reason for a lack of correct diagnosis. All are frustrating.

[ravenwoodglass]

It's also true that just because you feel better when you don't eat gluten doesn't mean you *are* celiac.

It is also true that just because your tests are negative doesn't mean you aren't celiac. It was doctors all out faith in the accuracy of blood work that lead me almost to deaths door before I was diagnosed. That thinking cost me many, many painfilled years.

As I have said before since folks with DH are diagnosed celiac without any gut damage at all there is no reason not to think that just because a biopsy is negative someone is not celiac. There are folks who have had a false negative on biopsy and then had a pill cam and the damage was past where the scope could reach.

Personally I don't care whether someone calls themselves celiac or Gluten Intolerant. Both are autoimmune mediated. The need for the diet is the same and the possibility of dire consequences is the same if they continue to eat gluten.

[kwylee]

Personally I don't care whether someone calls themselves celiac or Gluten Intolerant. Both are autoimmune mediated. The need for the diet is the same and the possibility of dire consequences is the same if they continue to eat gluten.

Here! Here!