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Struggling with symptoms and need some advice


will4318

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Fenrir Community Regular

So they retested you and it came back positive?


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will4318 Apprentice
18 minutes ago, Fenrir said:

So they retested you and it came back positive?

Yes, I eventually had a pill cam test looking for crohn's disease, but instead they thought they saw some villous atrophy so I had another biopsy which was positive this time. 

Fenrir Community Regular

Nice! You're lucky. Many people's Dr. give up after the first one and refused to go any further. At least you have your answer. 

It takes time to heal. It took about a month for most of my symptoms to go down quite a bit and about 6 months for a full recovery.

cyclinglady Grand Master

Thank you for reporting back.  I am sorry that you had to wait two years before getting a correct diagnosed (missed small intestinal damage during the first endoscopy).  Glad the pill camera caught damage allowing for the second endoscopy.

I am going to bookmark your post to show persistence in obtaining a diagnosis and the supporting fact that small intestinal damage can be spotty.  

I hope you recover fast!  

will4318 Apprentice
2 hours ago, Fenrir said:

So they retested you and it came back positive?

Yes, I eventually had a pill cam test looking for crohn's disease, but instead they thought they saw some villous atrophy so I had another biopsy which was positive this time

 

41 minutes ago, cyclinglady said:

Thank you for reporting back.  I am sorry that you had to wait two years before getting a correct diagnosed (missed small intestinal damage during the first endoscopy).  Glad the pill camera caught damage allowing for the second endoscopy.

I am going to bookmark your post to show persistence in obtaining a diagnosis and the supporting fact that small intestinal damage can be spotty.  

I hope you recover fast!  

Thanks both, I was seeing a private consultant thanks to insurance and he was very persistent thankfully 

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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. 
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