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Genesure


solitaire-master

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solitaire-master Rookie

Has anyone used the product called "Genesure"? It's supposedly 99% accurate and tests your DNA via cheek swab for celiacs disease.

 

Open Original Shared Link


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The most important page on the website is this one here:  Open Original Shared Link (talking about Biocard here)

 

Not trying to be a Debbie Downer, but it is just now being explored by the medical profession as a possible useful screening tool.  Not to say that it has no worth, but just so you realize that the results do have to be confirmed by a doctor since there have heretofore apparently been no peer-reviewed studies as to its accuracy.  Many of our posters swear by it and the results have often been confirmed by serological testing (this is the Biocard fingerprick test).  So keep eating your gluten until you have confirmation if you get a positive. 

 

As  for the genetics, I have no knowledge.  Enterolab in the US provides genetic testing which is accurate so I have no reason to believe that this company could not produce a pretty accurate genetic result.  But the genetic test only tells you if you have a likelihood of developing the disease; it says nothing about whether you have it or will get it.  Remember that over 30% of the population carry these genes.

 

So while it is all useful information and can point you in the right direction perhaps, it is not definitive. 

 

Good luck with your appointment and in getting the diagnosis you need. :)   I wish you good health.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
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      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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