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jkittels

My 2 Yr Old's Endoscopy Is Tomorrow!

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Hi all...I've been lurking a bit here, lately.

My daughter has been showing symptoms of celiac disease for about one year, but most prominently for the last 6 months. I finally brought her in to see her peds doc who did allergy testing and a celiac panel. Allergy tests were neg., celiac panel was positive. We've had our consult with the ped GI specialist, and are now scheduled for upper endoscopy tomorrow.

I'm scared! Here I am, a nurse practitioner! I know that this is a simple proceedure, but I'm also a mother...and I just am having a hard time seeing my daughter go through this. I'm also nervous about the consequence of the diagnosis and all that comes with it. It seems like such a high burden to place on such a little kid!

When we went to the GI specialist, he told my DH and myself that we needed to be tested too. I had my labs done on Monday and am waiting for the results. I've never really had any GI problems, so I don't really think that it is me. However, I do have another autoimmune disorder (Latent Autoimmune Diabetes of Adulthood, which is a form of Type I diabetes). I understand that celiac disease sometimes goes right along wtih Type I diabetes. DH has yet to have labs done....

ARRGG...I'm nervous for tomorrow. Any words of wisdom for someone just going through the diagnosis, and watching her 2 year old suffer with this?

THANKS!!!

Julie

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The endoscopy is relatively easy - it goes by quick, your home soon after, and at least for us, there was no lingering after effects by the time we got home. He was eating normally and playing. My son was 2 years/2 months when he had the endoscopy.

And I'm sure you are doing this already, but if she might have Celiac (and it sounds like there's a good chance she does), you should start her on the gluten free diet immediately. If you're unsure with what to give her, remember rice is always good, plain fruits, vegetables, Annie's dressings (for dipping the vegetables), Rosarita refried beans (all types), almost all corn tortillas, Fritos, a lot of sandwich meat, Dove chocolate.

And yes, one of the genes for type 1 diabetes is one of the main genes for Celiac Disease (HLA-DQ2).

And good luck!

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I think it's harder on the parents than the kids. Both the procedure and the diagnosis.

My daughter is six. Her endoscopy was first thing in the morning. I hope your daughter's is too. It makes it easier for them to go without the food and water. We were actually able to be in the procedure with her. We told her she would see us when she woke up from her nap. The only thing my daughter says now about it was that she remembers that her throat was dry when she woke up. We let her sleep as long as she wanted to in recovery. The nurse said that the longer she slept (within reason, I guess), the better she would feel when she woke up - because she would be getting the anesthesia out of her system. She woke up, whined a bit and went back to sleep. The second time she woke up, she was ready to eat and drink. The people next to us woke their child up (as soon as the nurse left them) and then there was a lot of moaning, whining and crying.

As the person in charge of her diet, you'll probably find it more difficult than she does. My daughter was really only upset about not getting chicken nuggets at McDonald's or Wendy's and not being able to eat Panera Bread Cinnamon Crunch Bagels. She's happy enough with the fact that she can still get the (gluten free) breaded chicken at home but we still haven't found a good substitute for the cinnamon crunch bagels.

In general, there are pretty good substitutes for just about everything - and the (young) kids are very accepting of what ever you put in front of them to eat. They grow up not knowing any different and I wonder if 20 years down the road if they had a piece of wheat bread if they would find the texture odd and pasty?

Good Luck tomorrow.

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Julie,

I was just in your position just 5 months ago. I was very anxious for my kids. I had both of my kids scoped on the same day. We had no idea of the celiac when we went in for my daughter, she was 20 months and my son was 5 1/2. The only symptom my daughter had was chronic diarrhea and large belly. I didn't sleep much the night before due to my anxiety. My kids had no clue. They still don't know what happened. They were both fussy afterwards due to the gas they gave them. Two hours later they were eating up a storm. More than they had in a while.

An encouraging note, five months from now you will be so glad you have changed your childs diet and it will come as second nature. My daughters diarrhea was gone in 48 hrs of changing her diet, and now five months into it, I am still trying new things but I pretty much know what she likes of the special foods(bread, cracker etc.) Another positive note your child is still young. My daughter has no idea her food is any different from anyone else. I try to make a replacement for our favorites here.

It will be over very quickly and your baby will be feeling better so soon. Also remember you are the mommy and follow you instincts. My daughters biopsy was negative, but blood work was positive, they wanted to repeat the biopsy, I refused and I am glad I did.

Everyone here helped me soooo much in those very early days. Their food recommendations are awesome and everyone is very helpful!!!

Good luck and let us know how it goes!!!

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Thank you all for your encouragement. I'll let you know how it turns out later today.

Right now, I'm sitting here with a huge amount of anxiety. I know my husband is feeling it too. They are both sleeping yet. We have to be at the hospital at 8:30 and the proceedure isn't until 10:30. They were going to try to switch us with another family to make the appointment earilier, but either the nurse forgot about it or the other family didn't want to change their scheduled time.

I was really angry last night at a friend who had called and talked to my husband. She gave him a horror story abouth a friend of her's kid whose diagnosis was cancer instead of celiac! ARRGGG..why do people do that?!!! It scared the crap out of my husband.(and made me start worrying again!).....

Well...again. Thanks for the encouragement. Will keep you all posted.

Julie

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Well...all went very well today. We got to the hospital and went through all the admitting process without problems, and then went with my daughter to pre-op, where everyone met with us regarding the proceedure. They wheeled her out on the cart for a "ride" and then put her out. Meanwhile, we went to the waiting room and got notices when they started the proceedure, finished the process and when she went to recovery. The doc came out and talked to us and showed us some of the pictures. Her stomach was great...looked fantastic, but her small intestine was spotted with pinpoint red spots and you could tell there was a difference in texture. He took about 4 biopsies and said that he was pretty sure they'd come back positive, but that his guess could ony be about 50% accurate. (which isn't really saying much). We'll have the biopsy results by Tuesday next week. He had us meet with the dietician, which means he would make the diagnosis of celiac disease.

So, here we go! I'm going to spend some time tomorrow getting myself organized. I need to clean out my freezers anyway...so, this will be a good excuse! I already sorted and cleaned out my flour/baking supplies a few weeks ago. Added bins of Tapioca, potato, rice and Teff flour and moved the wheat flour.

I've got some good cook books, so here I go!

Thanks for all the support. I'm sure I'll need more in the future...I'll be a frequent visitor here!!!!

Julie

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Julie,

I'm glad everything went smoothly even though it looks like big changes are ahead. I'm sure you and your husband will sleep better tonight now that that endoscopy is behind you.

It really hasn't been too difficult of a change for my daughter. I hope it won't be for yours, either.

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Jkittels, glad your daughter is doing well after the procedure. You need to throw the wheat flour in the trash, if you use it in the house, it poofs up & your daughter can breathe it in & it settles on everything. Just keep reading & get yourself some books like Gluten Free for Dummies, Dangerous Grains, Kids with celiac Disease by Donna Korn...

welcome to our gluten free world B)

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