Questions About Diagnosis And Tests

[NateJ]

I'm not looking for a forum diagnosis just some advice or opinions.

I've read a lot on the web and needless to say am a little overwelhmed and frustrated.

I just started seeing a new GI (one visit). I took all my recent test results with me for him to review.

Blood work, scopes, etc..

He stated that my last scope biopsy showed 'a marker' that indicates Celiac.

I've had two blood tests that were negative for Celiac but read a report that states the blood test can

be negative unless your 'end stage' or have no villi left at all.

so he wants to redo both scopes Upper and Lower in 1 month. told me to pig out on gluten.

But my symptoms are so bad i couldn't do it, consiously poison myself knowing what he told me.

So i'm going to try no gluten for about 2 weeks, then gorge myself on it before the test.

I guess my questions are. Will this effect my test results? Is 2 weeks enough time to see any differences

symptom wise, if I do have Celiac? and has anyone ever been negative on blood work and still been

positive on a scope biopsy?

thanks

Nate

[T.H.]

would it work? Maybe. There's no way to tell - it's pretty individual. Some folks here have eaten gluten for a few weeks and still showed negative, but did it longer and got a positive test. My brother cheated a few times on his diet a week before a re-test (he'd had one just weeks before, long story), and that was enough to show beginning damage. You just can't know.

However, I would really, really think long and hard about doing this. How bad are your symptoms? You feel crappy and blech, or you can't even get out of bed, are suicidal, get gluten ataxia, have severe pain or weight loss?

If they are simply utterly debilitating, did you mention to your GI that the symptoms are so debilitating that eating gluten again is not something that you can do? If you haven't, please do. Be very clear. He needs to know that he is asking you to do serious damage to yourself just for the sake of a test. And he needs to take responsibility if something really bad happens.

And if he already knows, and is still recommending this, it's something to consider: the test result is more important than severe damage to his patient...who he would then tell to do exactly what they've been doing, which is stay off gluten. If there are other issues aside from gluten that he needs to see, eating gluten won't affect 'em, yeah? The fact that your diet is changing your symptom level is test, too, and if he's not seeing it as such, that's not a good sign.

It is not unheard of to do serious damage to yourself on a 'gluten re-trial' because you're body simply can't handle it. There was even a recent study - I believe it was listed on the forum in the research section - that showed that people doing a gluten retrial were more likely to develop other auto-immune diseases within a few years. :-0 And if you have ANY neurological symptoms, you should be aware that most people do not heal up completely from neurological damage, so it is recommended that you stay away from gluten and do NOT cheat, if that's the case. I assume retrial is included.

If your doc insists that this is what you have to do, I would, again, think about it really carefully and do a lot of research on exactly what the fallout on your own body is going to be.

Wishing you good luck. I hope this goes better than expected.

[mushroom]

How important is the diagnosis to you? It seems like it must be pretty important since you keep having tests and scopes. If you really want that positive diagnosis and can't live with the grey area of "not really knowing" then you should do as much as you can to get the positive result. I presume, although you do not state, that you have been gluten free for some time??? The normal advice in that case is 6-8 weeks of gluten consumption before testing. So would 2 weeks work? It is doubtful in my book. Even four would be doubtful.

Many, many people test negative on both blood and scopes yet still have problems with gluten, and eat a gluten free diet. Heck, I had no tests of any kind and eat a gluten free diet (as well as a lot of other things free). So I guess I am of a different mindset when it comes to diagnosis

[NateJ]

i've only been doing gluten free for three days now. I already feel better. My symptoms were very severe to the point of I couldn't leave my house from abdominal pain and bouts of 'D'. I quit drinking coffee and soda and

have not eaten out in over 2 months but I seemed to be getting worse.

I do not think my Dr. understood the full extreme of my symptoms. He seemed preoccupied and overwhelmed by

everything i was trying to tell him. This was my first visit with him.

I'm not so much concerned with the Celiac Test results as I am about other damage or other causes of

issues. I still have reflux being off the gluten but today i actually had 2 normal bowel movements for the first time in over 2 months. I'm excited and skeptical. I have lots of other issues just having my gall bladder out

and I'm pretty much a kidney stone factory, but that i can live with.

I guess if this self test gluten trial goes well and i feel better I will just have the scopes to check for

other problems. I guess either way will lead to me hopefully feeling better.

thanks for the advice

[mushroom]

If you are not concerned about a positive diagnosis of celiac, just feeling better, then stay on the diet by all means and don't even do the pig out. The doctor can still check for other possible causes of your symptoms without your being on gluten. If he is willing to do the scopes it would be great to have them done and verify there was nothing else going on. Those who tell you to consume gluten do not have to suffer the symptoms and consequences of doing so, so it is all very well for them.

Gall bladder problems and kidney stones are frequent co-riders with celiac disease, by the way.

[NateJ]

  On 3/7/2011 at 11:25 PM, mushroom said:

If you are not concerned about a positive diagnosis of celiac, just feeling better, then stay on the diet by all means and don't even do the pig out. The doctor can still check for other possible causes of your symptoms without your being on gluten. If he is willing to do the scopes it would be great to have them done and verify there was nothing else going on. Those who tell you to consume gluten do not have to suffer the symptoms and consequences of doing so, so it is all very well for them.

Gall bladder problems and kidney stones are frequent co-riders with celiac disease, by the way.

I did not know that. They took my gall bladder in Dec. after having this test done called a Hydascan. Said my gall bladder was only functioning at 8%, then after the surgery the surgeon tells me that my bile duct was deformed, like a birth defect. So i was thinking, AWESOME! i'm cured. but no such luck. i actually got worse.

i've had kidney stone problems since i was 18. my urologist i saw today assured me that the stones were not related to anything else. but he wants me to do a metabolic panel at home.

I'm going to try the diet for a couple weeks and if it works awesome. but will still have the scopes done too.just to make sure. Even after one visit. i trust this guy way more than any other GI i've ever seen.

[RVLori]

Hi Nate. I was just diagnosed this month. I had my first upper GI and I've lost count of how many lowers I've had. The doctor showed me the pictures - not pretty - and my pathology reports came back positive for Celiac sprue. He still is sending me in for blood work which I have not done yet. He told me even if the blood tests comes back negative for Celiac sprue - his official diagnosis is going to be Celiac sprue. So yes, it sounds like you can have a negative blood test and still have the disease. Good luck to you. P.S - I gorged myself the day before I started my gluten free diet - big, big mistake - huge. I felt like death. Lori

[NateJ]

  On 3/20/2011 at 3:29 AM, RVLori said:

Hi Nate. I was just diagnosed this month. I had my first upper GI and I've lost count of how many lowers I've had. The doctor showed me the pictures - not pretty - and my pathology reports came back positive for Celiac sprue. He still is sending me in for blood work which I have not done yet. He told me even if the blood tests comes back negative for Celiac sprue - his official diagnosis is going to be Celiac sprue. So yes, it sounds like you can have a negative blood test and still have the disease. Good luck to you. P.S - I gorged myself the day before I started my gluten free diet - big, big mistake - huge. I felt like death. Lori

yeah. i'm still waiting on my biopsies to come back. I just had them done last Thurs. So hopefully I'll get some sort of answer even if its not Celiac.