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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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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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