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Got Me And My Husband's Test Results Back

salexander421

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salexander421 Enthusiast
salexander421
Posted

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.

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ravenwoodglass Mentor
ravenwoodglass
Posted

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.

salexander421 Enthusiast
salexander421
Posted
  • Author

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

sb2178 Enthusiast
sb2178
Posted

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.

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
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      By trents · Posted

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      Thank you for responding.  I didn't intentionally reduce gluten prior to the endoscopy though I dont generally eat a lot of it due to the unpleasant symptoms. I was under the impression my TTG of 87.4 was very high, at least that's what my doctor said.  
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