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Do I Need A Second Opinion?


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5 replies to this topic

#1 maxwell1200

 
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Posted 04 November 2004 - 10:02 AM

I was diagnosed on Tuesday being positive for celiac disease. They based this on a blood test alone. I have read many of the post and replies and can relate with so many of the stories and have the same symptoms. 10 years ago I was diagnosed with IB and been trying to deal with it and keep it under control. Now they say I have celiac disease, do I need a second opinion?

Angela
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#2 gf4life

 
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Posted 04 November 2004 - 11:44 AM

Hi Angela,

Your question about if you need a second opinion or not really depends. Are you questioning the validity of the bloodtests? Are you thinking that it might be wrong? It is a slim possiblity, but if you have symptoms and have previously been diagnosed IBS then the likelyhood of it being celiac disease is pretty high.

You might want to get a few more follow-up tests to check for nutritional deficiencies, and the only reason you would need a biopsy is to either have it as a pre-gluten free reference to compare with a future biopsy to check for improvement, or to convince a doctor that you do have celiac disease. If you doctor is willing to diagnose you based on the blood alone, then that would be okay in my mind. Of course the next doctor might tell you that you HAVE to have the biopsy to get a diagnosis. It is up to you to decide what is best for you.

There are problems with both the blood test and biopsy, but usually positive blood tests mean Celiac. It is the negatives that can often be false. It is like this: a positive test means positive for the disease, but a negative does not always mean negative for the disease, it can mean that you are not advanced enough with it to produce antibodies in the blood. The biopsy is not fail proof either. The damage can be spotty and it takes a skilled (and lucky) doctor, taking many tissue samples in the right places, to get an accurate diagnosis. If the doctor doesn't take enough samples and fromt he right places then you end up with a negative biopsy and are back to the IBS diagnosis.

If you feel the diagnosis is accurate, and you feel better off gluten, then I would go with that. But if you feel like you need a second opinion and a biopsy, then you had better stay on gluten while you seek those things, since going off of gluten will alter future test results.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#3 maxwell1200

 
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Posted 04 November 2004 - 01:13 PM

Thanks Mariann,
The test are probably right. I have only been gluten-free for 2 days. Ill give it time.
Angela
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#4 ys2kera

 
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Posted 05 November 2004 - 02:21 PM

i need some help,,,,,, i have had 2 blood test and both came back pos for celiac disease one biopsy came back pos and the second after one month off the gluten free diet came back neg. What do i do?
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#5 darlindeb25

 
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Posted 06 November 2004 - 02:39 AM

:unsure: i would go with the blood test--you may be gluten intolerant, maybe not full blown celiac yet and that is good--staying gluten-free will keep you from getting full blown celiacs--many times the blood work comes back celiac and the biospy comes back negative--i have read that so many times--gluten-free cant hurt you, but gluten may do damage you cant fix--i say, go gluten-free---deb :D
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#6 FreyaUSA

 
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Posted 06 November 2004 - 06:15 AM

ys2kera, I'm not really certain what you're asking for help about. With 2 positive blood tests and one positive biopsy, you definitely have celiacs. My guess is that the follow up biopsy either was taken from an undamaged area or your time on the gluten-free diet has helped to heal you significantly enough that even with a single month off it, you are still far better off than you were. There's been much discussion on how long is needed off the diet to show damage. Obviously for you, one month isn't long enough (which isn't to say that it isn't hurting you in other ways.) Keep going gluten-free! It's working for you!
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