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Endoscopy/Colonoscopy needed?


lolabelle

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lolabelle Newbie

Hi, I posted a few weeks ago that my daughter who is 4 was just tested for Celiac. Her results were positive but the doctor would like to have an endoscopy and colonoscopy because she has blood in her stool and her SED RATE and Fecal Calprotectin  were elevated. Thinking she may have Crohns or IBD. The scopes make me nervous and hate to put her through anything unnecessary. Has anyone who has been through a similar situation offer any advice? Thanks so much!


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StephanieL Enthusiast

Being young, it would be best to get a baseline and 100% confirmations on the Celiac diagnosis for many reasons.  I would do the endoscope/colonoscopy. The prep will be difficult and not fun but the procedure itself will be harder for you than her!  I promise you that. It sucks for parents.  My kid was 3.5 for his and he remembers none of it. I remember every minute and he doesn't at all!  He also had a brain MRI last year (he was 7) and it was ugly to get him under, again he remembers none of it thank goodness!  

Hugs.  None of us want to have anything done to our babies needlessly!  Not all parenting is rainbows but no one tells you that before you have these little people!  

Jenny Apprentice

My daughter was five when she was diagnosed through a biopsy.  The week before the prep, I talked up the fact that on the prep day, she could only have lots of sugary things--soda,jello, popsicles.  She helped pick out all of her prep 'goodies' and we rented a couple movies for the big day.  On prep, the entire family fasted to support her (even her three-year-old little sister).  By the way, I couldn't believe how much more time I had when I didn't have to spend time cooking, eating, or cleaning dishes!  Prep and procedure was much easier than I anticipated.

Looking back, I am so thankful her celiac was biospy confirmed.  It is serious disease and requires extreme vigilance for gluten-free diet.  The positive biopsy took any fragment of doubt away.  Good luck!

southpaw13 Newbie

My daughter is 7, and got scoped earlier this year. She only did upper, so there wasn't the same prep. I was more nervous than she was, and she has no bad memories of the procedure. Her celiac bx was positive, and I am very glad that we went ahead and did the scope to give us 100% confidence. In hindsight, I definitely do not consider getting my daughter scoped unnecessary (which I may have wondered about a little bit beforehand).

  • 3 weeks later...
Indigosue Newbie

Hi! I, too, debated whether to scope by 6 year-old daughter when her blood work came back indicating Celiac Disease. I talked to the Dr. at length about it and decided to go forward with it for two main reasons: It is a life altering diagnosis and we wanted to be 100% sure that a gluten-free diet was what we had to commit to and we also did want to have a baseline since we were fairly confident she had Celiac. She only had an upper biopsy but it really was an easy procedure. She worried about it but afterwards got over it extremely quickly. Best of luck to you.

 

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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
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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