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Should I Pursue Diagnosis?

BarryVV

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BarryVV Newbie
BarryVV
Posted

I have an appointment for an endoscopy in four weeks and am seeking input as to whether I go through with it.

I am convinced that I have gluten issues (long story), and have been gluten free for several months to the point that my symptoms resolved. The diet works for me - I hadn't felt this good in years.

My gastroenterologist told me I needed to resume gluten for 3 weeks prior to the endoscopy. He is also doing a blood test after I've been back on gluten. I intentionally ate some wheat yesterday to test my reaction (because I'm going to be on a business trip at the start of the 3 week time frame) and it has not been pleasant. I seem to feel much worse in the last 24 hours than I remember before I went gluten free.

So I'm not sure it is worth three weeks of feeling nasty to get an official diagnosis. The gastroenterologist claims it is important to know whether celiac disease is present or not - to rule out other possible issues. I trust him, but realize that he has a hammer so I look like a nail..... So I'm looking for some independent yet informed viewpoints: are there significant benefits to obtaining a definitive diagnosis?

Thanks..... I just discovered this forum, and it looks very helpful.

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Guest cassidy
Guest cassidy
Posted

This is a very personal decision. First of all, not all celiac is caught through biopsies and blood tests so you may have negative results even if you have the disease. It is frustrating that the diagnostic tools are not that accurate.

Celiac isn't like diabetes or high blood pressure where your condition changes and your medications need to be monitored. If the tests determine that you have celiac then you go gluten free and stay that way - that is that.

If you are feeling good on the diet and feel crappy when you eat gluten, that would be enough proof for me. I wouldn't want to put myself through 3 weeks of eating gluten plus the trauma and expense of tests to tell me something that I already know. My blood test was negative, however, I know I have a problem with gluten and I don't really care if I have celiac or gluten intolerance or something else - the diet is solving my problems and that is all that matters to me.

I also don't think this is a decision you need to make now if you are having a tough time with it. If you want to go ahead with the tests then start eating gluten again. You may get to that "I just can't take it anymore" point and your decision will be made for you.

I'm sure your doctor is trying to do his job, but what happens if the tests come back negative and he tells you that you don't have celiac, would you start eating gluten again? Probably not.

Glad you found the board, there is lots of good information here and very helpful people. Hope you get over this last glutening soon.

CarlaB Enthusiast
CarlaB
Posted

Actually, from what I've heard three weeks is NOT long enough! Dr. Greene, the celiac expert, I believe says four months/equivalent of 4 slices of bread per day. It could be three months ... I've heard both quoted around here. Anyway, three weeks is definately less than that.

If all my symptoms were resolved gluten-free, I'd just take the dietary response. It IS a valid diagnostic tool. No, you will not know whether you have celiac and the damage that goes with it. But does that matter?

It's a personal decision, but you will need more than three weeks to get the diagnosis.

aikiducky Apprentice
aikiducky
Posted

I agree with what the others said, three weeks is not long enough, you risk getting a false negative result that way.

Besides, being gluten free doesn't affect testing for ANYTHING ELSE. If your doc really just wants to check for other conditions, you can happily stay gluten free. But if the diet has resolved your problems, I don't quite see the point. Sounds more like he just can't quite believe that a simple diet change could be the solution.

But in the end, it's your decision. :)

Pauliina

Looking for answers Contributor
Looking for answers
Posted

Hi,

I recently had to make the same decision. I chose to go forward and have the procedure done. The worst part of it was recovering from the Anesthesia--the acutal process itself was not bad at all, although I had A LOT of anxiety prior to the procedure (now I know it wasn't worth stressing out about--the whole hindsight is 20/20 thing). I have been mostly gluten free for three years now and so I knew the biopsy would likely come back negative, and it did. However, I did learn that I have a hernia and that I also had gastritis. So if you have been gluten free and are still having issues, you might have some other things going on and the test may help detect them. I'm so glad to know that I have a hernia, for instance, because I've since made some modifications to my diet and feel a lot better.

Hope that helps!

Leslie

allison Rookie
allison
Posted

I am trying to make the same decision (as you'll see in another post i just put up).

I think reading this post just convinced me though that I should challenge myself for a few days (I have been gluten-free for a while too) and just see what happens. If I have a reaction, then SCREW THAT--you don't need some doctor to confirm with a test that might give you a false negative anyway.

Don't know about anyone else out there, but I'm sick enough that it is simply NOT WORTH IT to mess around with this.

LESLIE: What does the hernia feel like? I'm having an endoscopy on Monday for other issues too.

Hi,

I recently had to make the same decision. I chose to go forward and have the procedure done. The worst part of it was recovering from the Anesthesia--the acutal process itself was not bad at all, although I had A LOT of anxiety prior to the procedure (now I know it wasn't worth stressing out about--the whole hindsight is 20/20 thing). I have been mostly gluten free for three years now and so I knew the biopsy would likely come back negative, and it did. However, I did learn that I have a hernia and that I also had gastritis. So if you have been gluten free and are still having issues, you might have some other things going on and the test may help detect them. I'm so glad to know that I have a hernia, for instance, because I've since made some modifications to my diet and feel a lot better.

Hope that helps!

Leslie

Willow5 Rookie
Willow5
Posted

Ive been calculating the same thoughts! take a look at enterolab's web site, they claim to be able to detect higher levels of blood antibodies through stool samples than serum, they do genetic testing and also a malabsorbsion test which is a result of villi damage. Their price is fairly reasonable but am not sure that insurance would cover it. I am wondering if the combinaton of antibodies with genetic tests with the malabsorbsion issue may be sufficient to at least give you guidance in your diatary changes needed. I see that a fair number of folks on this site have gone that route. It seems that it may be possible that celiac may very well become diagnosed without the "gold standard" of a biopsy in the future. Nan

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