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Hi all,

I need some advice. I was diagnosed in November of this year, and because my toddler is very little I decided to do the blood tests for him. His numbers came back pretty high, and the next step is the endoscopy.

we are scheduled for tomorrow and my husband and I are a wreck over it. I don't want to do it. I have this. I have 2 aunts and an uncle with it. I don't know what this biopsy is going to tell us that we don't already know. Our kid has celiac? I think we know that.

Im honestly debating cancelling this. I don't know what to do. I talked to 3 pediatricians and got mixed messages. One said she thinks the endo is pointless since I have celiac and his numbers were high. One said I could do what I want, and that his numbers strongly indicate that he has it -- and all the endo will do is confirm that. But that his blood work wouldn't look like that if he didn't. The third told me that she recommends doing the biopsy because they can check him for other "issues" during it. 

He has no symptoms, other than the fact that he's tiny. He is 3 and weighs 25 lbs. 

i don't know what to do and I know you guys can't tell me what to do. But do you have opinions? Is it absolutely necessary to put my son under anesthesia to confirm this when his blood work is high and when I (and 3 out of my mom's 5 siblings) have celiac?

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The official diagnosis will help in the long run. There are some government programs and school programs that can help out, and these require the full diagnosis. Getting it down now might be worth it in the future to prevent having to introduce gluten again later and do it. It is your child and your choice, perhaps someone here can give you more details and stuff to read over to help you. Will keep you guys in my prayers.

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My then two year old was having stomach issues. Our pediatrition ran all possible tests and his antibodies came back very high (300). We were referred to a pediatric gi dr with suspicions of celiac. He gave us two options. 1) Continue eating gluten and get biopsy. 2) Because of the high antibody level, get genetic testing. In Europe it's very common with extremely high antibody levels and other "classic" symptoms for people to forgo the biopsy and get genetic testing for celiac. We chose the genetic testing route to avoid the strain of a biopsy on our little guy and so that we could immediately go gluten free. He still got the formal celiac diagnosis when his genetic test came back positive for celiac and will have all the benefits of that diagnosis (for school, etc). There are other options besides a biopsy. The downside of genetic testing is the cost, but it was worth it to us. Since then my husband and another of our children have both tested positive for the celiac gene, but neither have triggered the gene to develop celiac. It's a tough choice to make but you can get the formal celiac diagnosis without the biopsy if you find the right dr. Good luck!

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Our almost 6 yr old had a scope this year. Her results came back negative so part of me regrets having it done, but I wonder if I would have regretted not doing it and not knowing the answers. So I won't advise one way or another but only say that the scope was quick, she had no pain, and was back bouncing around in a few hrs. Be thinking of you tomorrow. 

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I am really on the fence on this one. The BIG question is........

ARE ANY OF THE DOCS WILLING TO DX HIM NOW WITHOUT A BIOPSY? If the answer is yes then I say forget the endoscopy. 

If not, then there are questions as to getting that dyed in the wool dx so he can have a 401 plan in school & be protected; that includes college too.

The endo is really no big deal having it done. Plenty have come on worried as heck & then their kid has it & it was a piece of cake. Read some in the Kids section

http://www.celiac.com/gluten-free/forum/10-celiac-disease-parents-of-kids-or-babies-with-celiac-disease/

 

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16 minutes ago, Karag said:

Our almost 6 yr old had a scope this year. Her results came back negative so part of me regrets having it done, but I wonder if I would have regretted not doing it and not knowing the answers. So I won't advise one way or another but only say that the scope was quick, she had no pain, and was back bouncing around in a few hrs. Be thinking of you tomorrow. 

I had decided about 2 weeks ago that we weren't going to do it. So I took him off gluten for a week. Then the doctor convinced us to do this. I put him back on gluten last week but I'm worried that his biopsy won't show damage since he was off for a week. My nurse friend said that he wouldn't have healed in a week and that he should be fine to have it done tomorrow because the intestinal damage takes longer to go down than blood serum levels. Do you agree?

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1 minute ago, squirmingitch said:

I am really on the fence on this one. The BIG question is........

ARE ANY OF THE DOCS WILLING TO DX HIM NOW WITHOUT A BIOPSY? If the answer is yes then I say forget the endoscopy. 

If not, then there are questions as to getting that dyed in the wool dx so he can have a 401 plan in school & be protected; that includes college too.

The endo is really no big deal having it done. Plenty have come on worried as heck & then their kid has it & it was a piece of cake. Read some in the Kids section

http://www.celiac.com/gluten-free/forum/10-celiac-disease-parents-of-kids-or-babies-with-celiac-disease/

 

I didn't specifically ask them if they'd diagnose him without it. They told me that it was my choice and that they believe he has it, because his blood results were high. His doctor said that she is 98% sure he has it, even without the endo. One of our NP's said she thinks this is pointless because it isn't going to tell us anything. My endo didn't tell me anything except "yep, I have celiac".... because treatment is the same regardless of the damage. Since they never said that they wouldn't diagnose him without it I assume they'd be willing to diagnose him. I didn't even think to ask that until I read that tonight.

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Just now, Fbmb said:

I didn't specifically ask them if they'd diagnose him without it. They told me that it was my choice and that they believe he has it, because his blood results were high. His doctor said that she is 98% sure he has it, even without the endo. One of our NP's said she thinks this is pointless because it isn't going to tell us anything. My endo didn't tell me anything except "yep, I have celiac".... because treatment is the same regardless of the damage. Since they never said that they wouldn't diagnose him without it I assume they'd be willing to diagnose him. I didn't even think to ask that until I read that tonight.

 

5 minutes ago, squirmingitch said:

I am really on the fence on this one. The BIG question is........

ARE ANY OF THE DOCS WILLING TO DX HIM NOW WITHOUT A BIOPSY? If the answer is yes then I say forget the endoscopy. 

If not, then there are questions as to getting that dyed in the wool dx so he can have a 401 plan in school & be protected; that includes college too.

The endo is really no big deal having it done. Plenty have come on worried as heck & then their kid has it & it was a piece of cake. Read some in the Kids section

http://www.celiac.com/gluten-free/forum/10-celiac-disease-parents-of-kids-or-babies-with-celiac-disease/

 

And before I decided to go ahead and do it I was set on not doing it. So he was gluten free for a week. I put him back on gluten a week ago. Is that week without gluten going to screw this up? Or is a week really no big deal? He's been eating tons of gluten for a week now. But the week before I had him on my diet.

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And there are doctors who will diagnose celiac without a biopsy. Our son has the formal diagnosis with just the antibody test and genetic test. He will be able to have a 504 once he enters school that will protect him and afford him the assistance he needs to remain gluten free at school.

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Sometimes they want to do endos and even colonoscopies to see if there are any other issues.   In the case of a small child, they may be concerned with developement of stomach, valves, etc.  probably depends on what his problems are.

Edited by kareng

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On 12/8/2016 at 8:55 PM, squirmingitch said:

I am really on the fence on this one. The BIG question is........

ARE ANY OF THE DOCS WILLING TO DX HIM NOW WITHOUT A BIOPSY? If the answer is yes then I say forget the endoscopy. 

If not, then there are questions as to getting that dyed in the wool dx so he can have a 401 plan in school & be protected; that includes college too.

The endo is really no big deal having it done. Plenty have come on worried as heck & then their kid has it & it was a piece of cake. Read some in the Kids section

http://www.celiac.com/gluten-free/forum/10-celiac-disease-parents-of-kids-or-babies-with-celiac-disease/

 

Well we went ahead with the endo. I didn't want to do it but I know that the doctors at children's are great and I also didn't even think about the fact that he would probably need the endo for school exceptions. It was ok. It was a fast procedure and we were out of there 2 hours after the endo. It will take a week to hear  from them. I'm glad we did it, but it was a crummy day. Thank you for thinking of us! 

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I'm glad it's over & done with and I KNOW you are!

He gets extra special hugs this weekend to make you BOTH feel better.

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