Doctor's Appt - Possibly Today, And Have A Question

[TracyB]

Hi everyone,

I've read a bit here that the blood panel is not very reliable. So what do I do should my Dr. agree to a blood panel but it comes back negative for celiac? I wonder, will she be aware that it can be a false negative? Is the biopsy pretty invasive? I've also read that when the biopsy is done it is preferable to take 5-6 samples due to the fact celiac can be "patchy".

My other question had been about the presence of constant pain. I rarely have pain anymore, although I certainly did have off and on for most of my life. I'd say I have little extreme cramping pain in the bowel now - almost none. What I do have is D and it is urgent and lately, without a lot of warning.

I'm trying to get it straight in my head before I see my Dr. as I want to be as knowledgeable as possible.

I do have good days, by comparison to my bad certainly. Is this normal in celiac? My neighbour friend was recently diagnosed with celiac after her mom was (about 3 years ago) and she had been diagnosed with IBS for many, many years - she was out of town this weekend or I would have grilled her with questions She is one of the people who told me I ought to get tested for celiac.

Once again, thanks for your help. I'm calling the Dr. office in an hour for a same day appt. so I'm hoping to have a bit more knowledge by then - thanks again for your help...

TracyB

[ShayFL]

Are you eating plenty of gluten right now and have been regularly for the past 3 months? This is the best you can do for an accurate blood test. It is true there can be FALSE NEGs, but go ahead and get the tests if you are/have been eating gluten.

The biopsy is invasive, but you are put under. You will not feel thing. They should take at a minimum 5-6 samples, more it a variety of areas is best.

If all comes back NEG, it does not hurt to try the diet. I am sure glad I did. I was NEG blood.

[happygirl]

Its worth it to have the Celiac panel done in order to get a correct diagnosis. You can always try the diet after testing, regardless of the results. The bloodwork may not be accurate for those who have a non-Celiac gluten sensitivity (i.e., those that do not have Celiac, but feel much better gluten free)

The endoscopy is not invasive - it is generally a very quick procedure. They don't use general anesthesia, unless there is a specific reason to.

Here are the blood tests you want run (there are five):

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[ShayFL]

When the biopsy was explained to me, I personally found it invasive. To me anything that enters a body cavity is invasive. I was at high risk for perforation due to adhesions so refused the biopsy. From what everyone on this board has reported most do get put under. One person mentioned having a numbing agent sprayed on the back of her throat before the scope was lowered through her esophagus. She said she kept retching and wished she had opted to be put under. She said it was very uncomfortable but not unbearable to do it conscious. So how you proceed is up to you. Or you might get a GI who will insist on the patient being out. It really is easier for them to do their job well if you arent retching.

[*lee-lee*]

yeah, i too say the biopsy is invasive. i've never had any surgical procedure before in my life so the sedation was a first for me. i was a bit freaked out at the thought of a huge tube being snaked down my throat and was very thankful when i woke up not having remembered anything after they inserted the bite plate in my mouth.

write down all your questions for when you see the doctor...that way you don't forget once you get in there. and keep eating gluten as you normally would until after the blood work and subsequent biopsy is complete. if you stop now, your body will begin to heal and the tests will be irrelevant.

as others have said, you can also try the diet even if the results come back negative. that's the good thing about celiac...you don't need a doctors permission to be gluten-free!

good luck!