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Going For Biopsy
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Hi, I'm new to this site. My son, Dane, is 12 months old. For the last month he has had extreme diaherra. Blood results are pointing toward celiac disease. His biopsy is scheduled for Monday morning to confirm and chech his villi. I'm scared and overwhelmed with everything I've researched. I've emailed the local celiac support group but have not received a response yet. If any one can tell me what to expect or where to find excellent advice I would really appreciate it all.

I've read about cross contamination- is this really as bad as it sounds? My husband and I have decided that if the biopsy does confirm celiac disease that we will live on the same diet as Dane to avoid any mishaps. Currently he is barely eating, and what he does eat comes right out. He is on Neocate One + but hates it but will drink 4 oz's at most. We also tried Neocate Jr and he absolultely refuses it. He has lost 2 pounds in 5 days.

I would be grateful for any advice, info, links, ANYTHING!

I'm scared and feel so helpless.

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I do not know what an endoscopy would be like for such a little one. For me they put an IV in and gave me "versed". This drug puts you in a twilight sleep, I was awake enough to follow directions from the nurse/doctor but DO NOT remember a thing.

Good luck to you and your little one!

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We just went through a biopsy with our son in January. It went fine. We did it at a childrens hospital. Ask as many questions that you need to to feel comfortable. Keep a brave face on for your little guy before hand it will help him alot to see you positive. The proceedure should take only about a half an hour, they should put him under completely for it. They do tend to wake up cranky after such a short time under.. I know ours did.. we didn't see him right away as they kept us out a little longer because he was a little wild when he woke up, when we got back there he was sleeping, but he woke up after a bit and perked up pretty quickly..

I chose to think of it this way.. hey think of all the times you can't get that little guy to take a nap.. well hey you will want the anestesiologist to come over every afternoon after this.. ;) easy nap time!!! Ok i'm a little weird.. but it sure helped me from loosing it.. I suprisingly got through tear free..

All kidding aside he should be fine.. and I would advise you to go with the gluten-free diet even if the biopsy comes out negative or even questionable.. with blood work pointing in that direction if there is no damage in there yet you can prevent that damage from ever occuring! And that is a good thing!

Denise

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My daughter just had her biopsy on St Patricks day. She is 4-1/2, so she is older than your little guy, but it might help to know that she doesn't even think she went to sleep. She does remember the poke on her hand, but tells us it didn't hurt as much as getting her blood drawn becuase of the special cream they put on her. She was crying when she woke up, so once we got to our room I just held her and sang to her to calm her down. She doesn't remember me singing to her either, so that made me feel better. We had everything ready to go gluten free as soon as the biopsy was over and she could eat again. We didn't want to waste those couple days while we waited for results, and I am glad we didn't. We have seen some results, but not as much as I had hoped for. I know it is hard to put your baby through this, but he can start geting better soon! Also, try and have some support for you and your husband if possible. Both sets of grandparents came down, and it really helped us, plus it gave Ashlee something that was good about the day.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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