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Brooklyn528

5yo Daughter Getting Egd In The Am.

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Hello Everyone!

Well, after two months of having bloodwork showing positive IgG antibodies, my daughter is getting a scope tomorrow to do biopsy to check for damage. She has both DQ2 and 8 with the possible silent Celiac mutation. The GI we saw for her was not very intune with Celiac. He suggested that we are doing the scope to to rule out Celiac because he thinks it's IBS. I just agreed because either way we will know what is going on. IBS does not cause antibody production. I was just wondering if anybody has any advice on how it will go or what to expect when we get home. I know that she is gonna be sleepy and not want to do much. I am going to rent some new releases, and I got her a new Christmas coloring book. Have any kids had nausea with certain food or anything like that? Thats about all I can come up with, but any advice would be much appreciated.

Thanks in advance,

Brooklyn

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No experience with kids, but I'm bumping this up for you.

I'm sure things will go smoothly. Kids bounce back much quicker that adults. You're doing a great job for your daughter!

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My son just had his biopsy done in August. He was only 18 months so he could not articulate how he was feeling like your daughter will be able to. But, he was so thirsty afterwards and we had a long drive from the hospital to home. If this is the case for you I suggest some juice and crackers (gluten-free of course). He wanted to eat about 30 minutes after. I had to stop at a store to get a very unhappy guy some juice and crackers to tide him over! He also acted cold, so his blanket went a long way! I'll be thinking of you and good luck. The good thing about kids is how fast they bounce back! We had a hard time keeping him from "exerting himself" just 2 hours after the test! He felt soooo much better soooo fast. I'm sure she will bounce back very quickly also!

PS: Kuddos to you for educating yourself and being smarter than those drs out there!!

Hello Everyone!

Well, after two months of having bloodwork showing positive IgG antibodies, my daughter is getting a scope tomorrow to do biopsy to check for damage. She has both DQ2 and 8 with the possible silent Celiac mutation. The GI we saw for her was not very intune with Celiac. He suggested that we are doing the scope to to rule out Celiac because he thinks it's IBS. I just agreed because either way we will know what is going on. IBS does not cause antibody production. I was just wondering if anybody has any advice on how it will go or what to expect when we get home. I know that she is gonna be sleepy and not want to do much. I am going to rent some new releases, and I got her a new Christmas coloring book. Have any kids had nausea with certain food or anything like that? Thats about all I can come up with, but any advice would be much appreciated.

Thanks in advance,

Brooklyn

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Great advice with the food and drink on the way home. It didn't even cross my mind. I will do that now though. Thanks!

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Hello Everyone!

Just wanted to update you on how my little trooper did yesterday. She was soo worried all the way up there. She didn't want to have to get any shots or IVs. I told her that she might not have to. We got there and the nurses and staff were all wonderful. They got her vitals and history kept her laughing the whole time. Then, the nurse gave me some gowns to change her into. They were super long. She said they were princess ones though. Then, they had one of the volunteers on the hall play board games with her until she went back. I was glad to know that they would give her some laughing gas to fall asleep, then do her IV. That was really the only thing that bothered her when she got back to the room. I held her and put my feet up in a big recliner. We slept there for about an hour. Then, we were being released and on our way home. It was a lot quicker of a process than I thought it would be. Of course, the doctor came in and said that it looked ok to him. He took two duodenal biopsies and one stomach biopsy. I will get results back in 10-14 days, and I am on pins and needles about them already. Thanks for all the prayers and well wishes.

Brooklyn

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Your daughter has BOTH genes for celiac, a family history of celiac, symptoms consistent with celiac, AND a positive Gluten IgG? And the doctor thinks she has IBS?????

After 4 years on this board, I find this more shocking than most of the posts I have read here.

I don't believe that your daughter needed an EGD/biopsy at this point. I think she should have been put on a gluten-free diet, and if symptoms didn't improve on the gluten-free diet, only then should an egd/biopsy have been been considered.

If your daughter was gluten-free or even gluten-lite at the time of the test, the results aren't valid. Period. In addition, there is a fairly high rate of false negatives amongst small children (though not false positives). Biopsies can rule celiac IN, but they really can't rule celiac OUT, especially with small children, who may not YET have enough gluten-induced villi damage to be easily seen.

I'm sorry, but I think either your doctor is either too ignorant about celiac to be trusted, or worse, knew perfectly well that an egd/biopsy was not necessary, but chose to put your daughter through an invasive procedure that DOES carry some risks simply to pad his bank account.

I'm glad and relieved that your daughter made it through so well, and hope that you find a better doctor.

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Your daughter has BOTH genes for celiac, a family history of celiac, symptoms consistent with celiac, AND a positive Gluten IgG? And the doctor thinks she has IBS?????

After 4 years on this board, I find this more shocking than most of the posts I have read here.

I don't believe that your daughter needed an EGD/biopsy at this point. I think she should have been put on a gluten-free diet, and if symptoms didn't improve on the gluten-free diet, only then should an egd/biopsy have been been considered.

If your daughter was gluten-free or even gluten-lite at the time of the test, the results aren't valid. Period. In addition, there is a fairly high rate of false negatives amongst small children (though not false positives). Biopsies can rule celiac IN, but they really can't rule celiac OUT, especially with small children, who may not YET have enough gluten-induced villi damage to be easily seen.

I'm sorry, but I think either your doctor is either too ignorant about celiac to be trusted, or worse, knew perfectly well that an egd/biopsy was not necessary, but chose to put your daughter through an invasive procedure that DOES carry some risks simply to pad his bank account.

I'm glad and relieved that your daughter made it through so well, and hope that you find a better doctor.

Since you are in in New York you may want to check with the http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm. It think it is one of the best places in the world. I found that it's really hard to work with doctors who don't know much. Our diagnosis was pretty straight forward but in addition to the gluten-free diet, so far, my daughter has had minor complications due to celiac like vitamin D defficiency, constipation, stomach pain that someone who specializes in pediatric celiac has been able to help out with.

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I agree with Fiddle Faddle. And, two biopsies is just pathetic. :angry:

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Fiddle Faddle- Hello. If you notice in my first post, I state that he is not very intune. He is an older GI and he is foriegn. He won't be the doctor I follow up with after I get the biopsy results. My boyfriend and I saw a different GI for my son. He was a younger doctor, knowlegable in celiac disease. He is having us do an elimination diet with my son. He doesn't have positive bloodwork just some symptoms.I will follow up with him for my daughter also. I said flat out to the doctor that saw my daughter that IBS does not cause antibody production after he suggested this diagnosis. Then, I asked him what other than celiac disease would cause that kind of antibody production. This is when he said that he would need to do an EGD to confirm celiac disease or IBS. I had a feeling at that point in time that my grandmother who was also there and looking at him like he was crazy knew more about celiac disease than he did. The only real reason I was apt to do the EGD is that she has had symptoms for a couple years. So, there very well could be damage. Thanks for your advice and backing me up that he is an ignorant doctor. Every once in a while when everyone else thinks your crazy you need a little encouragement from somewhere.

Seezee- I am not in New York. I live in Indiana. My name is Brooklyn. About the Columbia Center though, you have to know about Dr. Greene if you go there. I went to the CSA conference this year in Erie, PA. He was one of the speakers. I actually had a chance to chat with him about my family history and my children after he spoke. He suggested getting the EGD done also. He said that it would be more beneficial than harmful because of the ease of the procedure.

I think I'm going to ta

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once i removed soy from my son's diet he made great improvements. He is now soy free, gluten free, dairy free and egg free. He just eats the grass in the backyard :lol: Maybe remove soy also and see if your son improves? I am starting the SCD (Specific Carbohydrate Diet) tomorrow in hopes it helps him heal. He is 2. good luck with your daughter.

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