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Ignore Blood Test, If Biopsy Negative?


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#1 Lunabell

 
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Posted 30 December 2010 - 08:21 AM

Laura had her endo/biopsy yesterday. Her dr's partner did it since we wanted to sneak it in before the end of year. We met our deductible ages ago.;)

We discussed what to do if the biopsy came back negative. He said that he tells his patients to ignore the blood work if the biopsy is negative. Does this sound like good advice?

Laura has not had anything containing gluten since December 10th. Her GI knew that I was going to that after her last horrendous reaction to eating gluten. I felt it was child abuse to knowingly cause her such pain. The dr was fine with that and felt she wouldn't completely heal in 19 days.

Since Laura went gluten-free, she has not had a single stomach ache, she is running around like mad with bounds of energy and even weathered a cold without needing to be nebbed. It seems to me that it would be stupid to ignore a positive blood test and observed improvement on a gluten-free diet if the biopsy comes back negative.

If we do have a negative biopsy, I will be talking this over with my daughter's actual GI. I am not sure I should trust this other dr's advice.
  • 0
Jo
Rai-10-epilepsy, cortical dysplasia, hemispherectomy, cognitive and physical delays, negative celiac bloodwork
Mira-6- no known health issues
Laura-5-celiac (12/10)

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#2 sa1937

 
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Posted 30 December 2010 - 08:35 AM

His advice does not sound good to me. If the blood tests were positive and the biopsy is negative, especially with her positive response to the gluten-free diet, I think you already have your answer.
  • 1
Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
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#3 Jestgar

 
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Posted 30 December 2010 - 08:36 AM

Sure. Ignore the blood test, but pay attention to your daughter. If she feels better not eating gluten, then go with that.
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#4 CeliaCupCake

 
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Posted 30 December 2010 - 12:34 PM

I totally agree with sa1937 and Jestgar.

My blood test came back positive (not significantly high, but positive nevertheless) and I've recently received the biopsy result which is negative. I've been gluten free for a couple of weeks now with some improvement. I won't be seeing my GI for quite some time, so he conveyed a messaged to me via his secretary to take it that I have celiacs considering the positive blood test and response to a gluten-free diet, and to continue with the gluten-free diet until I see him again.
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#5 ravenwoodglass

 
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Posted 30 December 2010 - 01:24 PM

No you shouldn't ignore the blood test. There are too many false negatives with both blood and biopsy. If she is gluten free that almost insures a false negative. If she has been doing better on the gluten free diet keep her on it.
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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)

#6 Lunabell

 
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Posted 30 December 2010 - 01:46 PM

I am not going to ignore the positive changes that I have seen in Laura. It just seemed like very cavalier advice about something that is very serious. Thanks for all of the input. I guess I hoped a GI would take this more seriously. I am glad he is not our regular doctor.
  • 0
Jo
Rai-10-epilepsy, cortical dysplasia, hemispherectomy, cognitive and physical delays, negative celiac bloodwork
Mira-6- no known health issues
Laura-5-celiac (12/10)

#7 mushroom

 
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Posted 30 December 2010 - 02:01 PM

I am not going to ignore the positive changes that I have seen in Laura. It just seemed like very cavalier advice about something that is very serious. Thanks for all of the input. I guess I hoped a GI would take this more seriously. I am glad he is not our regular doctor.


As I said in a previous post, these doctors do not have to suffer the consequences of their cavalier advice. We should be able to wave our magic wands and transfer the symptoms to them when they make such stupid recommendations. :P
  • 2
Neroli


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#8 T.H.

 
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Posted 30 December 2010 - 05:29 PM

And actually, there has been some recent research suggesting you do just the opposite of your doctor's advice!

Here's the abstract of a recent study:
http://pubs.acs.org/....1021/pr100896s
They were looking at people with negative biopsies (but other symptoms, positive blood test, etc...), and finding that they still showed metabolic differences from a healthy person's body. Their conclusion would seem to apply to your child's case, "Our results demonstrate that metabolic alterations may precede the development of small intestinal villous atrophy and provide a further rationale for early institution of GFD [gluten free diet] in patients with potential celiac disease, as recently suggested by prospective clinical studies."


This article explains a little more about their results:
http://www.medpageto...nterology/23955

What they said was this: "The data suggest that 'potential celiac disease subjects are, indeed, not potential at all. They ... appear metabolically similar to overt celiac disease ... without any histological evidence of intestinal damage.' "


So if the blood test was positive, and it's clear that going off gluten is helping, it sounds like you're doing the right thing to ignore the ignorant doc's advice.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

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Daughter: celiac and MCAD positive

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#9 rosetapper23

 
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Posted 01 January 2011 - 03:14 PM

That gastro gave you the WRONG advice, so I'm glad you're willing to overlook it. According to leading celiac expert Dr. Alessio Fasano, results of biopsies can be notoriously incorrect because the damage can be beyond the reach of the scope, the surgeon may not have biopsied a damaged section, and/or the pathologist is not experienced/skilled enough to determine if there has been villi damage. As long as your daughter's blood test is positive and her symptoms resolve on a gluten-free diet, you have your answer--she has celiac.
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#10 Judy3

 
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Posted 01 January 2011 - 04:38 PM

My original blood tests were negative so they did the genetic tests on me. My doctor (a GI) said he goes by symptoms and response to the gluten free diet and then when my genetic tests came back positive for DQ2 he said no question it's Celiac. He didn't do a biopsy as he did the endoscope and colonscopy prior to suspecting Celiac but he told me that nothing makes a digestive system look that raw and irritated but Celiac. So there are some doctors out there that are aware that the tests have false negatives and the biopsies are not particularly accurate either. I was sick for months before they did all those tests and wasn't keeping anything down and living on cottage cheese and jello so he expected my tests to be negative. I'm glad I have a doctor that goes by symptoms and what he sees with his own eyes and my response to the gluten free diet over a lab test!!!

:D
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#11 Lunabell

 
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Posted 07 January 2011 - 02:36 PM

Back after a computer crash! I guess it was good that I picked something else than a new laptop for Christmas because I ended with both!

This question is a moot point. Laura's biopsies came back positive also. The nurse who called thought she was dropping a bomb on me. She was so confused when she found out we were already up and running on a gluten-free diet. Things had been going very well for Laura until she traded pretzels the other day in school. If there had been any ambiguity about her testing, it was pretty obvious the least couple of days that gluten makes her life miserable. Poor kid. I bet she won't trade food again anytime soon.
  • 0
Jo
Rai-10-epilepsy, cortical dysplasia, hemispherectomy, cognitive and physical delays, negative celiac bloodwork
Mira-6- no known health issues
Laura-5-celiac (12/10)

#12 Sarah B

 
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Posted 08 January 2011 - 07:07 AM

That gastro gave you the WRONG advice, so I'm glad you're willing to overlook it. According to leading celiac expert Dr. Alessio Fasano, results of biopsies can be notoriously incorrect because the damage can be beyond the reach of the scope, the surgeon may not have biopsied a damaged section, and/or the pathologist is not experienced/skilled enough to determine if there has been villi damage. As long as your daughter's blood test is positive and her symptoms resolve on a gluten-free diet, you have your answer--she has celiac.


SOme of you might know, my biopsy came back negative but I have a positive blood test.
My GI doctor said that in celiac patients, the damage is always located closer to the stumach. When I asked him if there could have been farther down or that he didn't go far enough, he told me absoluty not. Has there been test to show that there is damage to the small intestine farther down then normal?
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#13 Jestgar

 
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Posted 08 January 2011 - 02:12 PM

SOme of you might know, my biopsy came back negative but I have a positive blood test.
My GI doctor said that in celiac patients, the damage is always located closer to the stumach. When I asked him if there could have been farther down or that he didn't go far enough, he told me absoluty not. Has there been test to show that there is damage to the small intestine farther down then normal?

I don't know that it's ever been studied. Ask your doctor for the reports/papers that show what he's saying to be true.
  • 0
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#14 ravenwoodglass

 
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Posted 08 January 2011 - 02:22 PM

SOme of you might know, my biopsy came back negative but I have a positive blood test.
My GI doctor said that in celiac patients, the damage is always located closer to the stumach. When I asked him if there could have been farther down or that he didn't go far enough, he told me absoluty not. Has there been test to show that there is damage to the small intestine farther down then normal?


False negatives on biopsies are not uncommon. You have a positive blood test for a reason. Damage can be patchy and be missed if they don't biopsy the right place. Since you had a postive blood test you do need to get on the diet strictly.
  • 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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