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salexander421

Got Me And My Husband's Test Results Back

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Me and my husband decided to go ahead and get tested for celiac disease since we found out our daughter carries one of the genes. I've been on a gluten free diet for a while now but they went ahead with the blood test and it came back negative (I was expecting this due to my diet). My husband's also came back negative which was a little of a surprise to us since he seemed to have more symptoms. I asked the nurse what test they ran and all she kept saying was "celiac panel". They're faxing the results so I can look at them myself. Anyways, they want to go ahead and confirm the test results with an endoscopy. Is it standard practice to go straight to an endoscopy after a negative result? It would make more sense to me to do the gene test first to see if we even have the gene before jumping to an endoscopy.


Proud breastfeeding, toddlerwearing, part time cosleeping, stay at home mom. Positive for two copies of DQ8, negative celiac panel after 3 month gluten challenge; biopsy showed gastritis, inflammation in the esophagus, and hiatial hernia but no signs of celiac. Possible DH. Gluten free as of 3/11/2011

ODD 3 1/2, positive for DQ8 and DQ6, negative celiac panel after 3 month gluten challenge. Gluten free as of 3/10/2011

YDD 2, no testing. Positive for DQ8 and DQ6. Possible DH. Gluten free as of 3/10/2011

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Yes it would be standard to go to the endo after the blood test. It is good that your doctor knows that false negatives are not uncommon. They are not uncommon with the endo either so the diet should be tried after the endo is preformed. No need to wait for the results. The gene tests are not diagnostic and more celiac associated genes are being found than the two most commonly looked for. A gene test is interesting but not conclusive.


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)

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 in time with proper diagnosis of Celiac November 2002

 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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Yes it would be standard to go to the endo after the blood test. It is good that your doctor knows that false negatives are not uncommon. They are not uncommon with the endo either so the diet should be tried after the endo is preformed. No need to wait for the results. The gene tests are not diagnostic and more celiac associated genes are being found than the two most commonly looked for. A gene test is interesting but not conclusive.

Ok, good to know it's standard practice. I would just think a gene test would give you a better idea of whether or not it would even be necessary to do such an invasive procedure. We do know that our daughter has both symptoms and the DQ2 gene so it has to be coming from somewhere right? Knowing my husband, if both the blood test and endo are negative he will not try the diet. He's just to dang black and white on medical stuff. Drives me crazy. I do think though, if he has the same gene my daughter has he would be more likely to try the diet even if his blood test and endo are negative. I on the other hand am already gluten free and would need to undergo a gluten challenge before the endo. Gluten free makes such a huge difference with me I'm not really willing to do that I would just like to know if the risk is in my family, hence the gene test.

How common would it be to have both a negative celiac panel and a negative endo and still have celiac disease? I'm thinking not very likely but then again I'm fairly new to all this.


Proud breastfeeding, toddlerwearing, part time cosleeping, stay at home mom. Positive for two copies of DQ8, negative celiac panel after 3 month gluten challenge; biopsy showed gastritis, inflammation in the esophagus, and hiatial hernia but no signs of celiac. Possible DH. Gluten free as of 3/11/2011

ODD 3 1/2, positive for DQ8 and DQ6, negative celiac panel after 3 month gluten challenge. Gluten free as of 3/10/2011

YDD 2, no testing. Positive for DQ8 and DQ6. Possible DH. Gluten free as of 3/10/2011

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How common would it be to have both a negative celiac panel and a negative endo and still have celiac disease? I'm thinking not very likely but then again I'm fairly new to all this.

More common than we would like for a variety of reasons. If you think it would help get your DH to try the diet you certainly could get the gene tests done but try to go with someplace that will test for more than just the DQ2 or DQ8. Glad to hear the diet is also helping you. If your DH is symptomatic he really should try the diet. Have him try it starting the day the endo is done, before you get the test results. His response to the diet may be enough to convince him before the results are even back.


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)

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 in time with proper diagnosis of Celiac November 2002

 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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That's a question I've been puzzling over for a while. From the lit that I can find, false negative blood work depends very much on the lab (50% was one abhorrent lab's rating on biopsy proven, previously positive celiac patients on a gluten-based diet but it seems like 5-20% is more the norm). False negative biopsies are rarely discussed, which is frustrating.

The other question I've been considering is having progressive autoimmune disease and the standards of diagnosis requiring substantial tissue destruction. It's like rheumatoid arthritis-- better to catch and treat as early as possible-- but the celiac diagnosis requires really substantially non-functional intestines. Sub-clinical and latent celiac disease must exist, but how can it be reliably diagnosed when our markers are correlated to flat intestines???

The genetics are definitely interesting-- I had mine done to help reveal whether I might have the autoimmune aspect, or be on a course of developing it. But, as said above, NOT diagnostic. Just one more puzzle piece. I have been able to use it to influence getting relatives tested.


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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