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Opinions On Doing Biopsy

lovemykids

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lovemykids Newbie
lovemykids
Posted

I am new the forum, we a little one that is 14 months old, when he started on all table foods, he progressively started getting sick...that was around 10 months. It started with a rash, then ear infection and congestion that would not go away. It took 3 weeks and 4 antibiotics for the rash do go away. We went to an allergist, he said our son is allergic to wheat, we took him off of it.... and he slowly was getting better but because of some issues we had in trusting him we went for a second opinion...that one told us he is not allergic and give him wheat... so we did. That night he couldn't sleep, had stomach pain etc. So we decided to take him off it again. Since we were unable to get him off of his reflux medication and since we had bad luck with the allergist, our pedi ran a celiac blood panel, the nurse told us he DID NOT have to be on gluten and I didn't know any better at the time, but he came back with IGA deficiency anyway (he was a 1) so the pedi said it would have been negative anyway....so on to the GI we go.. he had been gluten free already for a couple of months...she really wants to do a scope/biopsy, but of course he has to be on wheat to do it.

Well, we started the wheat yesterday, I am giving him one slice of whole wheat bread a day. I was told he has to eat it for a month.....I am really hoping to make it to the test day on the 26th becasue we really just want to know for sure.

We also have another dynamic....he was and adopted embryo, we have an open relationship with the donors, they just had twins and there are 6 more embryos going to be adopted out.They say there is no family history, but we all know they may not know someone has it....so it would be good to find out for them and the future siblings...

so my questions is...who all has done the scope and how did you make it to test day if your LO was hurting...or did some of you chose not to do it and why? Do you just plan on your child being gluten free forever or try gluten again a few years down the road?

This is so hard...He did good yesterday, but today he is hurting...but...he is now cutting a tooth so we don't know which it is!ARG.....why can't they come up with a test that doesn't require you eating this stuff!

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divamomma Enthusiast
divamomma
Posted

It is hard waiting that is for sure. We are currently waiting for a biopsy. It was originally scheduled for two months away ut we just got bumped up to Jan 10. I was really considering skipping the biopsy and just going gluten free based on the positive blood. In your situation though it may be helpful to have the biopsy since nothing showed in the blood test. I am new here as well so can't offer much advice but I know exactly how you feel!

beebs Enthusiast
beebs
Posted

I am new the forum, we a little one that is 14 months old, when he started on all table foods, he progressively started getting sick...that was around 10 months. It started with a rash, then ear infection and congestion that would not go away. It took 3 weeks and 4 antibiotics for the rash do go away. We went to an allergist, he said our son is allergic to wheat, we took him off of it.... and he slowly was getting better but because of some issues we had in trusting him we went for a second opinion...that one told us he is not allergic and give him wheat... so we did. That night he couldn't sleep, had stomach pain etc. So we decided to take him off it again. Since we were unable to get him off of his reflux medication and since we had bad luck with the allergist, our pedi ran a celiac blood panel, the nurse told us he DID NOT have to be on gluten and I didn't know any better at the time, but he came back with IGA deficiency anyway (he was a 1) so the pedi said it would have been negative anyway....so on to the GI we go.. he had been gluten free already for a couple of months...she really wants to do a scope/biopsy, but of course he has to be on wheat to do it.

Well, we started the wheat yesterday, I am giving him one slice of whole wheat bread a day. I was told he has to eat it for a month.....I am really hoping to make it to the test day on the 26th becasue we really just want to know for sure.

We also have another dynamic....he was and adopted embryo, we have an open relationship with the donors, they just had twins and there are 6 more embryos going to be adopted out.They say there is no family history, but we all know they may not know someone has it....so it would be good to find out for them and the future siblings...

so my questions is...who all has done the scope and how did you make it to test day if your LO was hurting...or did some of you chose not to do it and why? Do you just plan on your child being gluten free forever or try gluten again a few years down the road?

This is so hard...He did good yesterday, but today he is hurting...but...he is now cutting a tooth so we don't know which it is!ARG.....why can't they come up with a test that doesn't require you eating this stuff!

We are waiting for our 17 month old's biopsy on the 20th of Jan.

My 4 year old just had one two days before christmas. And to be honest it was a real non event. Seriously- every kids that went it woke up fine and wanted to play. I was so scared- I was crying when they put him under. Afterwards I was just in awe of how amazingly resiliant kids are and how they bounce back. It was like my 4 year old and all the other kids had not had anything done! They were running around and singing and eating sandwhiches!

Of course I am still worried about my 17 month old - but I feel heeeaaappps better about his endo. I just know that it isn't as scary as I thought it was going to be.

The one thing that makes me want to get this done is I need a diagnosis. What if it isn't celiac - what if its something more. Dana Korn has in one of her books a true story about a young boy who was sick and the mother was convinced it was celiac. she decided against the Endo saying it was too invasive and just went gluten free. 2 years later he was still sick and wasting away. They did the endo and he had Crohn's not celiac! I'd be devasted if I got it wrong. Plus one autoimmune dieases can mean more, so even if it is celiac threre could be other things going on as well as well as things like GORD etc.

I just want to cross the t's and dot the i's. Its been a really long time coming. And I hate watching my little one sick every day. Its awful to see his twin growing massive and him just staying little and fragile, and spewy and sick all the time. But it will be over soon and we can move on with our lives!

Plus once its done its done and we will never have to do it again (hopefully!)

Good luck!

Ps - my two kids are negative on all their bloods - they show for low iron and low vitamin D and that is enough for me to know that there is something not right!

Mizzo Enthusiast
Mizzo
Posted

YES it the hardest thing a parent can do. We all had to wait for the test, and it is very hard, BUT you have to ask yourself, everyday, can we do this for 30 days to get an answer so we never have to do it again for the rest of our lives!!!!!

The only reason so many people get the test when going gluten free has already proved there is a problem is ;

1. Peace of mind in knowing for sure

2 You will need test results and Dr. notes for school food services to provide safe lunches

I am not so sure 1 piece of bread a day for 30 days is even enough for accurate results, sorry to tell you that. Also ( others chime in here) but I believe the age of your child may in question as to the accuracy of the results as well.

good luck

lovemykids Newbie
lovemykids
Posted
  • Author

Thank you everyone. I too need to know. I would hate to keep trying to give him wheat/gluten products every 6 months or so when he may not be able to eat it at all. I'm sure it won't be the easiest 30 days but I know myself and if I back out, then after the thirty days gets here I will be kicking my self for backing out.

As far as how much he needs to eat....I asked the GI several times and she said that one slice of whole bread a day is 2 servings for a 14 month old....but if anyone else knows something different please chime in....if we are going to go through this I want to make sure he is as glutened up as possible with out it being too much.

mushroom Proficient
mushroom
Posted

One slice of bread a day for a toddler may well be enough; however, I am not sure that a month is long enough - normally two months is recommended which I know sounds like an eternity... Doctors all have varying recommendations and varying knowledge about celiac disease. I am just quoting what those who seem to know about these things have stated on the board. Some medical professionals, like your doctor's nurse, don't even know you have to be eating gluten at all. It is all very confusing for the patient and I know this is not what you want to hear. But if you go to all this trouble you do want the test to have the best chance of being accurate. :)

lovemykids Newbie
lovemykids
Posted
  • Author

It is hard waiting that is for sure. We are currently waiting for a biopsy. It was originally scheduled for two months away ut we just got bumped up to Jan 10. I was really considering skipping the biopsy and just going gluten free based on the positive blood. In your situation though it may be helpful to have the biopsy since nothing showed in the blood test. I am new here as well so can't offer much advice but I know exactly how you feel!

That's great the test date got moved up! Has your little one been on gluten this whole time or did you have them off and had to re start it?

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salexander421 Enthusiast
salexander421
Posted

As far as how much he needs to eat....I asked the GI several times and she said that one slice of whole bread a day is 2 servings for a 14 month old....but if anyone else knows something different please chime in....if we are going to go through this I want to make sure he is as glutened up as possible with out it being too much.

We are undergoing a gluten challenge with our almost 3 year old. The GI said 3 servings a day for 3 months. I try to make sure she has some form of gluten at every meal and at every snack, I have the mindset that if we're going to do this we need to make it count!

lovemykids Newbie
lovemykids
Posted
  • Author

We are undergoing a gluten challenge with our almost 3 year old. The GI said 3 servings a day for 3 months. I try to make sure she has some form of gluten at every meal and at every snack, I have the mindset that if we're going to do this we need to make it count!

Does your child get stomach pains etc with the Gluten? How do you get past that? It's a little frustrating since our son can't talk yet too, he can't tell us what is going on. He isn't feeling so well today, decreased appetite...he wouldn't eat his toast this morning, but he is also starting to cut some teeth so I hope that's all it is!

salexander421 Enthusiast
salexander421
Posted

Does your child get stomach pains etc with the Gluten? How do you get past that? It's a little frustrating since our son can't talk yet too, he can't tell us what is going on. He isn't feeling so well today, decreased appetite...he wouldn't eat his toast this morning, but he is also starting to cut some teeth so I hope that's all it is!

I guess we are pretty fortunate, we don't really deal with stomach pains as a result of gluten. Both my girls respond with constipation which we are managing with miralax, and they both get whiny and irritable and clingy more but they never complain of pain or anything. Oh yeah, they get really tired all the time yet they have a hard time going to sleep at night. My almost 3 year old definitely has a decrease in appetite and I'm pretty sure she's lost some weight but we haven't had her weighed yet. I wish I could help you a little more. I do know the stomach pains are pretty common so maybe someone else on here will chime in with some advice on how to manage it. I do definitely find it harder with my 17 month old since she can't really communicate when she's fussy, my almost 3 year old on the other hand is pretty good at communicating her feelings so it's been a little easier with her.

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