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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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    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
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      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
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      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.
    • trents
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      My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful, especially when the test results are marginal. But a result of 87.4 is probably out of the normal range and into the positive range for any lab's scale. But back to the question of why your endoscopy/biopsy didn't show damage despite significantly positive TTG. Because they took the trouble to take seven samples, it is not likely they missed damage because of it being patchy. The other possibility is that there hasn't been time for the damage to show up. How long have you been experiencing the symptoms you describe in your first post? Having said all that, there are other medical conditions that can cause elevated TTG-IGA values and sometimes they are transient issues. I think it would be wise to ask for another TTG-IGA before the repeat endoscopy to see if it is still high.  Knitty kitty's suggestion of getting genetic testing done is also something to think about. About 35% of the general population will have one or both genes that are markers for the potential to develop active celiac disease but only about 1% of the population actually develop celiac disease. So, having a celiac potential gene cannot be used to definitively diagnose celiac disease but it can be realistically used to rule it out if you don't have either of the genes. If your symptoms persist, and all testing is complete and the follow-up endoscopy/biopsy still shows no damage, you should consider trialing a gluten free diet for a few months to see if symptoms improve. If not celiac disease, you could have NCGS (Non Celiac Gluten Sensitivity). 
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