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Endoscopy And Kids

fripp017

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fripp017 Apprentice
fripp017
Posted

As a Celiac myself, I would like to know if they have it. My daughter was tested, she will be 2 in May, and her blood panel came back a pretty high response to gluten. She didn't show definitive lab results for Celiac though. They want to do an endoscopy on her in the next couple months. Has anyone done this to their child? Is it worth it?

Against my better judgement as a mom, I also had my 4-year-old son tested. I am still waiting on results. As a Celiac I want to know to look for symptoms and new reactions to food. After being gluten free for a couple of months I had to cut out dairy. I want to know if it is just a gluten thing or if it is the disease. As a mother, I don't want to put my children through the tests that I have been through.

Any advice .... PLEASE!!

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Nicholasmommy Apprentice
Nicholasmommy
Posted

I just went through a similar situation.... My son is twenty months and twenty pounds. His blood work indicated at the very least a problem with gluten. I was going to do the endoscopy but decided against it. I decided against it because well...First, there are risks to putting a small child under like that. Plus, it may come up negative but he does in fact have celiac or a gluten sensitivity, intolerance, or allergy. I also think that the diet is the real "golden standard." If your child improves with the diet than you have your answer (mine did.) Also if you child wants it done when they are older than they can just go back on gluten.

But do what YOU think is right, your the mama and you know best. Don't let anyone including a doctor tell you that you are wrong b/c your not! Let us know what you decide

celiac-mommy Collaborator
celiac-mommy
Posted

You will hear a mixed bag of who's done what here. Both my kids had the biopsy and I don't regret the decision at all, it was the right choice for our family. You have to do what's right for yours.

inskababy Rookie
inskababy
Posted

We chose not to do the endoscopy...but then we have a 7 mo old. We chose to believe the genetic test and dietary response. If he was older and had an uncertain dietary response that was less obvious, I would definitely consider it.

If my older son's test comes back positive or questionable, we may indeed do an endoscopy.

Genna'smom Apprentice
Genna'smom
Posted

Hi

No advice as you really have to follow your heart - we had no idea what was wrong with our then almsot 2 year old she just stopped eating and drinking anything. AFter 2 hospitals they put in a ng feeding tube as she had lost so much weight - they then did an endoscopy to look at her acid reflux we wondered if that was the problem - while in there they did biopcies and it came back she had celiac. Without the biopcies we would have never know as she had no symptoms and all blood work came back negative along with 150 allergy tests by being pricked in the back.....

PS - she also had to have a second one when they had to put a feeding tube in her stomach and they did see improvement....

Good luck.....

The Kids Folks Apprentice
The Kids Folks
Posted

As others have said you have to do what you feel is right for your family. You will hear from those who felt/feel strongly that the endo is what needs to be done. You will also hear from those who will tell you that the diet is all that you need. For what its worth this is what our family did...

Our DS 7yo was having major digestive issue - chronic C, horrible gas and bloating and slow/no growth. After much trouble with our peds she did a partial celiac panel - he was negative, told me "not to do the diet (its too hard)- try treating the symptoms". Saw a peds GI "don't do the diet its too hard - here's more medication to treat the symptoms". Fast Forward - DS ends up in ER due to treating the symptoms and not getting to the issue. Have little faith in Peds and Peds GI. :angry:

As a Mom I decided with DS (and rest of the familiy) it was time to try it our way - Our family went Gluten Free in October 08 - all symptoms subside, no more gas, chronic C, restless sleep, bloating. Growth has returned he has gone from way below the 3rd % in height to the 5% and gained 4% in total weight.

A benefit that we didn't expect was that our DD 4yo was also on meds for 2.5 years for reflux/gerd -is now med free! Gluten Free has made her a much different child!

We have now switched peds! This one understands that it can't hurt to try the diet! If it works GREAT! If not, then its time to start looking into what else is the problem/issue/concern! :D

As a family - we know that if DS or DD was still having issues, then we would have definitely gone forward with the endo or any other tests that would be medically required!

Mom to mom - listen to your gut. Its hard, but you are with your child and know your child better than anyone. Listen to all advice and then make the decisions that are right for you and your family. Sending you hugs as you start this journey.

The Kids Folks

linsmad Rookie
linsmad
Posted

My husband and I just struggles with this exact decision ourselves. My dh has celiac and we decided to blood test both of our kids a year ago (though neither were showing any symptoms). One came back slightly elevated, the other negative. Our pediatric gi advised waiting and re-testing our slightly elevated child via blood 6 mos later. The results were slightly skewed. One of the tests came back markedly higher while the other one decreased. We were recommended to have our 7yo daughter undergo a biopsy. Our first reaction was to try dietary changes for a number of months and then re-blood test (which the doc agreed to as long as we were willing to commit to 6 mos.). In the end we decided to undergo biopsy so that we have an answer. For us we needed to be able to tell her (and ourselves) yrs from now that we have definite results. The process was not bad at all (both dh and I have done it ourselves but were dead set against it for our daughter). Honestly things couldn't have gone more smoothly. Our outcome was that she has celiac. I am glad that I have those definite test results for her and for me! Best of luck with your decision-it's never easy, but just do what you think is best for you and your child!

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fripp017 Apprentice
fripp017
Posted
  • Author

Thank you all for your opinions. It really means alot to me. I discussed it with my husband and he was not worried at all about getting our daughter tested. He didn't really see why I didn't want it, but told me we didn't have to do it. He can be such a man sometimes. I do feel that I agree with linsmad and the only reason I think I am probably going to go through with the endoscopy is because my doctor never gave me a definite diagnosis. I did what I thought was right. But, for a child you don't really have that option. If she has it, then it will be,"No you can't eat that because it will make you sick." It won't be because I asked her not to eat it, just in case. I can't see taking away some of the food they love when it isn't needed. So, I think I want to find out if it is really needed. Also, my daughter did much better with the blood test than my 4-year-old son. I thought that was kinda funny. Still waiting to see what his results are, but the more I pay attention, the more I think he shows alot of similar symptoms to my daughter. We will see.

celiac-mommy Collaborator
celiac-mommy
Posted

Just a side note you may have to consider, my dd's biopsy was glaringly positive but my son's was suspicious visually, but the biopsy came back negative. Because of his significant dietary response, our GI diagnosed him purely based on that. He went from below the 10% in height and weight to the 50th in weight and the 75th in height--in 1 year!! I guess the point is, even if you do the biopsy, you might be forced to make a decision anyway. (I still don't regret having the biopsy done though...)

fripp017 Apprentice
fripp017
Posted
  • Author

What is dd, dh, ds, etc. ? I am lost lol

celiac-mommy - I know. I had to kinda do that with myself. I have personally been through it and as long as you have results there is still hope through a second opinion as well. There are some awful doctors out there. You could always consider that for your family. You don't have to put them back on gluten, just take the medical records to another doctor. (Depending on your insurance too.)

celiac-mommy Collaborator
celiac-mommy
Posted
What is dd, dh, ds, etc. ? I am lost lol

celiac-mommy - I know. I had to kinda do that with myself. I have personally been through it and as long as you have results there is still hope through a second opinion as well. There are some awful doctors out there. You could always consider that for your family. You don't have to put them back on gluten, just take the medical records to another doctor. (Depending on your insurance too.)

my rendition of the abbreviations is:

dd-darling daughter

ds-darling son

dh-darling husband (this one threw me, was always thinking dh was dermatitis herpetiformis :P )

I'm just glad that we have a great pediatrician who noticed there was something abnormal and he sent us to a great ped's GI who felt 100% comfortable diagnosing just based on the dietary response. I was afraid when the biopsy came back negative that we wouldn't agree to keep him gluten-free-not that it would have mattered to me, I would have done it anyway-but was very pleased that we were on the same page! I know most people don't have the same luck the 1st time around...

taylor- Rookie
taylor-
Posted

Hey there,

I had an endoscopy at 1.5 and I turned out OK :)

Granted, 18 years ago they didn't have all the fancy blood test, stool test etc. So I'm not really sure what my parents would have done if I was 1.5 and being diagnosed right now. Like everyone else said, its really up to you and your husband as the parents, everyone's family has different needs.

I know from a child's prospective, I am glad my parents got a definite diagnosis while I was young. I hear all the time about how horrible it must be to have never tried pizza or cake or bread, but I feel like those who have experienced all those foods for a long time have a much harder time dealing with getting rid of them. If the endoscopy did give you a definite result of celiac, she would be learning from a young age what foods she can and cannot eat, and like you said, would know that those food would make her sick, not just that you did not want her to eat them. I knew by the time kindergarden rolled around that I needed to double check all foods with an adult that knew about my food problems and could rattle off "I have celiac disease, I can eat wheat, oats, barely or rye" to anyone that would listen to me.

I also know that if I didn't have that definite diagnosis, when middle school and high school rolled around, I probably would have started eating gluten on my own, knowing that I didn't "officially" have celiac. Since that's when kids start eating out with friends and being in more social settings, I struggled just because I don't remember being sick or all of the tests and hospital visits. The disease didn't seem like it was a real problem that I had, because I had never really experienced the effects of it. If that makes sense...

It was the reminder from my parents that this was a real, diagnosed condition as well as the consequences I felt the few times I did cheat that helped me stick to the diet. If I am honest with myself I know I would have rebelled and cheated way more often if I did not know for certain that I had it.

  • 2 weeks later...
fripp017 Apprentice
fripp017
Posted
  • Author

Thank you all for you input. It looks like it's going to be a long road for me. My son's test came back and his were very similar to mine. So, looks like my bad genetics were pretty dominant. My son just turned four. He loves pizza, toast, and crackers. I am so upset. I think he is going to have a hard time. He has no choice, but he chooses not to try new things. I was really hoping his test would come back negative. I will be getting him the endoscopy too. Well, wish me luck.

PS Thanks to Taylor, I'm glad to see a child happy with their parents' decision and I hope my kids appreciate it too.

celiac-mommy Collaborator
celiac-mommy
Posted
Thank you all for you input. It looks like it's going to be a long road for me. My son's test came back and his were very similar to mine. So, looks like my bad genetics were pretty dominant. My son just turned four. He loves pizza, toast, and crackers. I am so upset. I think he is going to have a hard time. He has no choice, but he chooses not to try new things. I was really hoping his test would come back negative. I will be getting him the endoscopy too. Well, wish me luck.

PS Thanks to Taylor, I'm glad to see a child happy with their parents' decision and I hope my kids appreciate it too.

If you like to bake, I can give you the recipes I use for pizza crust, bread, etc... I am a baker and I love to cook. I've made it a goal to create all the same foods the kids ate before to be gluten-free. We've had great success. My kids' lunches look the same as the other kids at school-if not better-and my dh says that my pizza crust tastes better than any other gluten crust he's had (and he's a bit of a pizza snob :rolleyes: ), and according to my dd, I make the best homemade mac and cheese "EVER" :P

With my kids, I don't make a big deal about what they can't eat, but focus on all that they can have. I wish you the best of luck!

fripp017 Apprentice
fripp017
Posted
  • Author
If you like to bake, I can give you the recipes I use for pizza crust, bread, etc...

With my kids, I don't make a big deal about what they can't eat, but focus on all that they can have. I wish you the best of luck!

I have been searching for some easy bread recipes. I have a bread maker too, it's just hard to find all the fancy ingredients. So, if they aren't too complicated, I would love to get some of your recipes!!

I think that is a great way of looking at it. I am not exactly a positive person, so it's hard for me to focus on the more positive ideas. But, I've made it this far and I know I can do ANYTHING for my kids.

Thanks for the encouragement. I needed it :)

Jessy

celiac-mommy Collaborator
celiac-mommy
Posted
I have been searching for some easy bread recipes. I have a bread maker too, it's just hard to find all the fancy ingredients. So, if they aren't too complicated, I would love to get some of your recipes!!

I think that is a great way of looking at it. I am not exactly a positive person, so it's hard for me to focus on the more positive ideas. But, I've made it this far and I know I can do ANYTHING for my kids.

Thanks for the encouragement. I needed it :)

Jessy

If I don't have the flour ingredients listed for any of the following recipes, I use whatever I have, I've never had a problem with it coming out wrong. I don't use bean flour AT ALL because I don't like the taste. I sub it for another flour or blend. Always use the recommended rise and bake times and I always rise my bread and crusts in an oven that has been turned on to 100 degrees and then turned off. When rise time is done, I turn the oven to the recommended bake temp and set the bake timer for 5 min longer than suggested (to make up for the pre-heat).

pizza crust:

Open Original Shared Link

bread:

Open Original Shared Link

Crusty kalamata olive and rosemary bread:

Open Original Shared Link

AMAZING quinoa hot cereal-thought I'd throw this in, it's really good!!

Open Original Shared Link

Let me know if you have any questions

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