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News: Celiac.com: PvP Biologics Creates First Therapeutic Enzyme for Celiac Disease


Scott Adams

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Scott Adams Grand Master

Around 1 percent of the American population is affected by celiac disease. For the ... Most are slow or don't target all of the gluten molecules. ... “The obvious [benefit is that] you don't have to worry about following a gluten-free diet.

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Ennis-TX Grand Master

Good in theory but I have a feeling they will flop like all of the other enzyme therapies.....like trying to prevent the sticky floor and mess of pouring a glass of juice on the floor by putting down a pile of paper towels...you going to get most of it but some is going to get through some is going to splatter and cause collateral issues......you can not just intercept and try to prevent a reaction to a bloody molecule smaller then a germ, a dang protein, buy trying to eliminate it after it has entered the body......like drinking bleach/antifreeze and trying to puke it all back up....it is in your body your going to get some ill effect maybe not as bad or quick.  

Key is eliminating the gluten before it enters the body, or turning off the bodies response to the protein. THOSE would be what we need, I see more potential in a kind of "gluten vaccine" that might turn off our immune response to gluten. Even is just a temporary measure like say a crispr RNA treatment or a targeted immune suppressant.

I think these doctors might have to experience how even the tiniest CC effects many of us and how before they try coming up with a half baked treatment of dealing with it in the body.

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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? 
    • Wheatwacked
      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.
    • RMJ
      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.  
    • Samanthaeileen1
      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. 
    • JoJo0611
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