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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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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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