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Possible Celiac


gypsyrosenfmommy

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gypsyrosenfmommy Newbie

My 2 year old just had blood drawn for a comprehensive test. We should hear back tomorow. He gets very bloted, gassy, has diareaoften, wakes up with gas pains crying and very foul poops. I know they say 25% of people with our geneti disorder (nerofibromatosis) has it. I also have bowl issues. Such as i often have mucus in my bm. Often that is all i poop is mucus. What are the chances of a false negitive for a comprehensive celiac test? Does it sound like celiac?


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kareng Grand Master

This assumes a "normal" diet with gluten in it.

For adults:

Open Original Shared Link

"Is it possible to have a negative blood test, but a positive biopsy?

While rare, it is possible to have a negative blood test and still have celiac disease. tTG sensitivity is approximately 98%, which means that 2% of all celiacs may have a normal tTG level. Sometimes tTG antibodies are not produced enough to show up in the blood stream and can only be detected in the intestinal mucosa by special means.

IgA deficiency is a reason why you might have a negative blood test, but a positive biopsy.

Further medical evaluation is important for anyone still experiencing symptoms in order to establish the diagnosis or to rule out celiac disease as a part of establishing another diagnosis. In some cases, celiac disease is the wrong diagnosis as such conditions as Crohn’s Disease and food protein allergy Open Original Shared Link"

For little ones:

Open Original Shared Link

"At what age should children get tested for celiac disease?

Generally, children are screened for celiac disease at age 2 or 3 unless symptoms are seen beforehand. In children younger than 3, with symptoms, antibody testing may not always be accurate. Children must be eating wheat or barley-based cereals for some time, up to one year, before they can generate an autoimmune response to gluten that shows up in testing. A pediatric gastroenterologist should evaluate young children experiencing a failure to thrive or persistent diarrhea for celiac disease."

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • 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. 
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