What Benefit Is It To Me To Know?

[txnmaryann]

OK, newbie here.......I had a biopsy 2 weeks ago, the pictures of my duedoem (SP?) showed atrophy consistent with celiac disease. When I got home and saw the picture...it was so gross....I cut out all gluten immediately. I had been suffering w/D for a long time. It immediately cleared up. A week later, my biopsies came back normal. I continued the gluten free and continued to feel better. Went to dr. today, he wants to now have me do another test....swallow a camera....to verify if it's celiac....as well as do the blood test, which I haven't had done. I ask, what is the benefit to me, I know the diet is making me feel better. He says, well that other diseases can result from celiac, it's better for me to know one way or the other if I should be on the lookout for the other diseases. My husband and I are thinking, go gluten for another 2 weeks, spend half the day in the bathroom and in pain, spend more money at the doctor, to then go back on the diet??!! Is there really any benefit for me to know for sure one way or another?? I really have not had a hard time on the diet so far b/c it has made such a drastic difference in how I feel........Thanks in advance for any advice!

[eKatherine]

Going on the assumption you are either gluten intolerant or have celiac, you're already planning to treat it properly, and you can keep an eye out for any of those symptoms you should watch for. But if you're gluten-free, you should be minimizing your chances of complications anyway.

[Ursa Major]

Your husband is right. Save yourself the agony and the expense, and keep doing what you're doing. It's obviously working, you're feeling much better, no need for further testing. Tell your doctor you're happy just staying on the gluten-free diet, and you have no intention whatsoever of making yourself purposely ill again.

It's often the hardest thing to get your spouse to be supportive without a 'proper' diagnosis. Your husband is obviously backing you 100%, be glad and keep up the good work.

[Nancym]

The only reason I got tested was so I could have a piece of paper to wave at my family and tell them they probably have it too. It didn't work though. They don't want to go gluten-free.

[spunky]

I agree with the others. It sounds pretty barbaric to purposely make yourself sick for a confirming diagnosis. Sometimes I wish I would've gone to doctors over this, rather than having totally treated myself, just so I could say "I've been diagnosed..." when people don't believe the importance of my dietary paranoia. "I think I'm celiac" just doesn't sound as convincing.

But maybe it really woudn't make that much difference. As far as watching for other diseases, from what I understand, the more time you are gluten free, the more likely you are to avoid these complications, if they didn't already occur before stopping the gluten.

When I first went gluten free, it seemed I had a cerain amount of new, strange symptoms, such as getting very shaky and hyper, and I wonder if my thyroid could've been rebounding or something. I was worried for a while, but those symptoms stopped on their own after a few weeks. I think I've read that in 2-5 years gluten free, the autoimmune disorders and all of that are no more likely than they would be with non-celiacs, and I just hope that's true!

[eKatherine]

I agree with the others. It sounds pretty barbaric to purposely make yourself sick for a confirming diagnosis. Sometimes I wish I would've gone to doctors over this, rather than having totally treated myself, just so I could say "I've been diagnosed..." when people don't believe the importance of my dietary paranoia. "I think I'm celiac" just doesn't sound as convincing.

I just say, "I can't eat that, it makes me sick." How can anybody question that?

[txnmaryann]

I'd like to thank you all for replying. I have decided to not go further with testing. And, yes, since seeing the pictures of my endoscope, my DH is understanding......before that........

I'll be posting more as I continue to cope with this.........