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Nervous About Biopsy + Thoughts On Doctor
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This is my first post.  My DD is 5 and goes in for her biopsy tomorrow.  We are extremely nervous and wondering why we are even doing this considering she responded very well to having gluten removed for a week when her blood test came back positive.  She only tested positive to 1 of the 4 tests, however her Vitamin D levels were very low and she has a lot of joint pain, so they recommended the biopsy in order to know what we are dealing with.

 

Dr. Dan Thomas is performing the procedure at Children's Hospital Los Angeles.  He is the Chief of the GI department.  Does anyone have any experience with him or the CHLA team?

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I had the biopsy done. Its really no big deal. :) She probably won't remember anything. All i remember is getting an IV done (and the nurse showing me how deep my veins were on the ultrasound machine due to being unable to find them easily), then being wheeled into the room where it was going to be done. The last thing i remember was becoming really dizzy and the next thing i knew i was back in the room i started in.

 

If he is the head of that department, I wouldn't be worried. :)

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Hugs. It was so hard when my now 6 yo had it done. It's never a "simple procedure" when it's your kid!!

 

If you want a firm diagnosis you NEED this or the Dr. to say "100% yes!".  Having the dx will help if/when you need accommodations for school and stuff. So no, it isn't fun. She most likely won't remember it and you'll have the info you need.  Stay strong. Be ready to cry AFTER she's out (I went with DS into the OR suite).  It sucks and you will both get through it!

 

And more hugs!!!

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Its hard, anytime anesthesia is involved for our little ones!

But yes, do it now while she's young and you can get solid documentation to move forward.

 

Having the chief as her doctor would make me feel more confident.

 

Good luck today! And all the best thoughts for your daughter.

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Thanks for the replies.  CHLA was amazing.  She didn't shed one tear the entire time and they made us all feel very comfortable.  She was in and out in a flash and all was well!

 

They did find some indication while doing the upper endoscopy that showed possible signs of Eosinophilic Esophagitis, which I think makes me more nervous than the Celiac.  Now we just wait for Pathology.

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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
    • A negative result from a biopsy that is. 
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