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adamjames

Endoscopy For 19 Month Old

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Hi

I have Celiac disease (diagnosed 4 months ago) and we now suspect our 19 month old daughter has it too. She is not gaining weight and is very small for her age (under 3rd percentile in weight, 10th for height)

We saw a pediatric GI doctor a few days ago and she wants to perform an upper endoscopy on our daughter. I've had about 4 or 5 of them myself, so I know how traumatic they can be (even sedated).

Her blood test came back inconclusive, but suspicious.

Have any parents out there had their child go through an upper endoscopy?

We're just afraid of putting her through this kind of traumatic experience if we can avoid it by just trying the gluten-free diet first. She's extremely sensitive and aware of her surroundings for her age.

Thanks

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False negatives for both blood work and endoscopy are common for kids your daughter's age. The best test for young children is trying the gluten-free diet.

So, it is obviously your choice, but if it was my child/grandchild I would just put her on the gluten-free diet and see if she improves.

Plus, it will be so much easier for you not to have to worry about being glutened by a messy toddler, if she is gluten-free as well.

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That's about how old I was when I had my 1st endoscopy. It came back "inconclusive" - so they put me on the diet, and I improved dramatically within days. The doctors said, "well, there's your answer - keep her on the diet!" I would try the diet first before doing anything invasive.

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I am not sure that I can give you any advice as I am going through the same thing myself. I was DX in August and both my children were showing signs s owe took them to a ped. allergen and he wanted to get them tested, so we have since done that (last week) and now waiting for the results. My daughter is 3 1/2 years (she is the one I am most worried about) and my son is 12 months. I dont know if I would want to put them through that this young unless I absolutely had to, I think that I would just try going gluten-free and see how that helps.

Good luck with it all. I know haw hard it is.

Jess

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I did the endoscopy on my 3 year old, because i didnt think i would be able to stick to the gluten free diet 100% without solid proof. In your case you are already committing to the gluten free diet, so it wouldnt be so big of a lifestyle change for you. I would probably just try the gluten free diet. I don't think that's what your question was though. In answer to your question, I have had my little one have an endoscopy, and it was the easiest procedure she has ever had. They let you stay with the kiddo until they are asleep. They use gas and put them out before they start any drugs through IV. My little one didn't even remember them putting the gas mask on her. All she says is that she loves her doctor because he gave her a stuffed animal. She also remembers getting a popsicle afterwards. Honestly I would do it again tomorrow in a second. Some of us just need a solid answer, black and white, on paper. I'm one of those. Also if you plan on sending her to public school, you'll have an easier time getting accomodations for her if you have a diagnosis. Don't worry about her being scared or traumatized by the endoscopy, she wont be. Do what you think is right for your family. good luck!

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The endoscopy doesn't just look for Celiac, but other conditions as well. She may have something other than Celiac, or something on top of Celiac, that the endoscopy could find. You may also want to have her gene tested.

What defines "suspicious" for bloodwork? Was the tTG or EMA positive?

This is a site with good info http://www.guideline.gov/summary/summary.a...19&nbr=4186

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The pediatric GI told us that in my daughter's case, the endoscopy would only confirm her diagnosis so we opted not to have it done. Her very high blood work results and the amazing response to the diet were enough for us. The few accidental glutenings we've experienced have further cemented the diagnosis. I'm glad she didn't have to go through that procedure when she's so small and already was so sick.

I think the decision is deeply personal. Are you convinced that your child has celiac? Are the doctors convinced? If the answer is yes, I don't see what could be gained by further testing.

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Hey there! I had my endoscopy at 18 months. I'm almost 19 now (in January) and I'm glad that they did it back then, now I have that conformation for anyone that doubts me.

oh and PS. I look happier in my hospital pictures than any other pre-diagnosis pictures i have. i think it's from all the candy and free stuff they gave me, haha. But I really don't remember any of the pain or anything from the surgery or even being sick at all. I think if you do it now it will save her the trouble of possibly having to challenge herself and get an actual diagnosis later.

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My son had one last year when he was just 3 yrs. old, he did great! He did not remember anything, he just really loved the two or three popsickles he got to have afterwards! they knowck them out with gas where they can piock in most cases what they want it to smell like- Banana, Strawberry, Melon or something for example, after that they are done pretty quickly! Our GI wnats to do an endoskopy on my almost 1 yr. old, I"m less worried aobut the Edoskopy then the fact that I have to put her back on Gluten for two month- I'm still debating wheter or n ot I'm n gonna do it! :(

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My son was 21 months old when he had his endoscopy. It was more traumatic for me than him. Of course, his was just for confirmation. His blood test came back sky high. BTW, he is now 7 years old and doing great on the diet. It is amazing how the little guys adapt.

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My dd had her scope when she was 3 yrs 1 month. We had the same experience, I stayed with her until she was asleep. Next thing she knew she was getting popsicles and a lot of TLC from mom and a special stuffed animal named Murphy who is a puppy in a purse with flowers on it. One year later she still loves to play with Murphy. She got 3 pages of blues clues stickers which now adorn the middle window in our van. The hardest part for her was eatting nothing but jello for 24 hours since they were doing a rectal scope as well. She had tremendous amounts of blood in her stool and they wanted to make sure that everything was ok on that end as well. Turns out the blood was from the celiacs and is now gone.

I spoke to my friend of 17 years who is now a doctor/surgeon. This is what she said...

"I tell all my patients, you could try diagnosis through diet however there are many conditions that will respond to a gluten free diet. If you have a positive response to the diet you may only be treating a symptom of something that is much bigger. It is always safer to find out exactly what is going on inside especially in a child"

Now she is a doctor so she is obviously going to say something along those lines. However what she said made sense to me. Katharine had high blood tests but with the blood in her stool I wanted to make sure that there wasn't something bigger going on as well/instead.

I agree with some of the earlier posts. It is a very personal decision on what is right for you and your family. I am the kind of person that won't rest easy until I have a tangible positive diagnosis. But I can tell you that Katharine came out of it fine and still recalls how happy she was with the stickers and popsicles and me by her side when she awoke fully. I wish you luck in your decision and I hope your little one feels better soon. Good luck to you as well on your gluten free journey! :)

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