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Going For Biopsy


danesmom

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danesmom Newbie

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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Guest jhmom

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!

DLayman Apprentice

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

ashlees-mom Rookie

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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      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
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