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Frustrating Results!


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7 replies to this topic

#1 svs

 
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Posted 30 June 2011 - 07:12 AM

My doctor has done two blood test to test for Celiac, HOWEVER, I wasn't eating gluten when these tests where taken and he doesn't want to do anymore tests as he thinks I have it for sure. My aunt (and possibly one uncle, waiting to hear back on that) have it. I am just frustrated that he won't do the tests again. I for sure feel 100% better compared to what I did off of gluten but would've liked to know for sure.

Any opinions?
  • 0
SVS
Stomach issues for over 15 years; doctors initially thought it was IBS. After years of meds for that not working, I gave up!
Have had 2 negative blood tests for Celiac due to already eating gluten-free. Doctor won't do biopsy due to Aunt having Celiac; he says he's 90% sure I have Celiac too.
Trying hard to make this my lifestyle! :D

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#2 sa1937

 
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Posted 30 June 2011 - 07:20 AM

My doctor has done two blood test to test for Celiac, HOWEVER, I wasn't eating gluten when these tests where taken and he doesn't want to do anymore tests as he thinks I have it for sure. My aunt (and possibly one uncle, waiting to hear back on that) have it. I am just frustrated that he won't do the tests again. I for sure feel 100% better compared to what I did off of gluten but would've liked to know for sure.

Any opinions?

I think your body has given you the answer that the blood tests did not! If you weren't eating gluten at the time of the tests, they wouldn't be accurate. Actually there's a possibiity of false negatives anyway. And if he did the tests again, you'd get the same negative results so it wouldn't prove anything.

Welcome to the forum!!!
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Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010

#3 ravenwoodglass

 
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Posted 30 June 2011 - 07:23 AM

For your doctor to do any testing you would need to go back to a full gluten diet for at least 3 months. You have a family history of celiac, you feel better on the gluten-free diet and your doctor has told you that he has diagnosed you as celiac. While you could choose to do a challenge and be retested you do still run the risk of a false negative. If being gluten free has taken care of the issues that prompted you to go gluten free in the first place then you do have your diagnosis.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 Mummyto3

 
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Posted 30 June 2011 - 11:34 AM

If you're well on the 'diet' then, like others have said, stick to it. I also agree your results will be neg when you're not eating gluten. Did the dr not check if you were eating it?
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Work like you don't need the money, love like you've never been hurt and dance like no one is watching.

#5 RL2011

 
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Posted 30 June 2011 - 12:09 PM

After reading about many other peoples stories here on this forum, I think you have to determine what kind of proof will satisfy you. About 7 years ago I had blood tests done after many years of dealing with gut issues. Those results were negative but the Dr said he is pretty sure I am gluten intolerant and should follow a gluten-free diet. He based this on me having relatives diagnosed with celiac disease. I partially followed his advice and cut down my gluten intake but still ate some foods with gluten and drank a lot of beer.

Over the past 2 years I had been miserable. Bad gut problems and constant diarrhea. Back in March after going through gut hell, I went to Dr (GI) and had new blood tests done the beginning of May that came back positive. The Dr suggested a biopsy and I thought about it for a while. I determined that if I had listened to the Dr 7 yrs ago I would have spared myself a lot of misery. I canceled the endoscope biopsy and made the decision to go gluten-free for life.

I know how I feel now compared to before and I am satisfied with my decision to go gluten-free without that final biopsy determination. If you want to take the guess work out of it and don't want to go back on a gluten diet to get proper future test results then get the genetic test done to see if you are genetically predisposed for celiac disease.

Good luck with your decision and that is a pretty picture as your avatar!

:)
  • 1
Richard

#6 Mari

 
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Posted 01 July 2011 - 01:20 PM

I had confusing lab tests but felt better off gluten foods so had the DNA genetic marker tests done. I carry a main celiac marker/gene
. Since these markers are inherited it may help your relatives decide if they need to be gluten free.
  • 0
DQ6/DQ8
HLA-DQ B allele 1 *0602: HLA-DQ B allele 2 *0302
Gluten free and Cow Dairy free since 2006

#7 Skylark

 
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Posted 01 July 2011 - 02:10 PM

Your doctor is exercising an unusual amount of common sense. I talked to my doctor about gluten challenge and he said "It's too hard to get the celiac tests to come out positive and you would just make yourself sick for no reason."

I know it's a little frustrating to be undiagnosed. I never had testing except as a very young child and I was already off wheat because it gave me stomach aches. You have to trust how much better you feel off gluten and work from there.
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#8 ravenwoodglass

 
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Posted 02 July 2011 - 03:14 AM



If you want to take the guess work out of it and don't want to go back on a gluten diet to get proper future test results then get the genetic test done to see if you are genetically predisposed for celiac disease.



The only problem with that is that usually they only test for two out of as many as 27 celiac associated genes. My daughter who had been both blood and biopsy positive later had her genes tested by a different doctor. They only tested for DQ2 or DQ8. She was negative for those so the doctors told her that her previous diagnosis was wrong. That prompted me to get my genes tested and I found I was a double DQ9 which is an unusual gene here and usually considered in the US to be an RA associated gene...in other countries it is a celiac associated gene though. After what the doctors told her she went back on gluten and now considers all her symptoms to be 'nerves'. I worry about her but there is nothing I can do but hope that some day she will realize that her bodies reaction to gluten is what is most important. Hopefully that will happen before permanent damage will be done.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)




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