Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Bracing For The Endoscopy
0

7 posts in this topic

Well, my 16 month old daughter is having her scope on Friday morning. While waiting to see the GI, we had more allergy testing done and found in addition to the off the charts milk allergy, the whole egg and egg whites are off the charts as well. The ped GI noted that her gliadin was low but the levels that were high (I wasn't scribbling fast enough) were high in 25% of the population, so he wasn't convinced of celiac disease based on that and even after having seen my daughter in person. We have our scope in a little more than 24 hours. I just found out that they don't allow parents to accompany, so I'm a little bit sad about that. Maybe it's for the best, though. I forgot to ask about the amnesiac. My daughter has major anxiety just being in the same room as other people, so I know it's going to be a long day for her.

Question - do they have to look for celiac disease specifically or will they know it when they see it? Anyone know if the same goes for things like eos/ee?

I don't know whether or not to hope they find something. It would sure be nice to figure out what's been causing the failure to thrive as well as her irritability, etc.

For those of you that have gone down this road already, any tips, advice, questions or subjections I should bring up with the GI?

Thanks much!

0

Share this post


Link to post
Share on other sites


Ads by Google:

If your daughters GI doc is checking for celiac disease he will do biopsies of the small intestine during the scope. A microscopic examination of the biopsies are necessary for the diagnosis of celiac disease (If the villi, which line the small intestine, appear flattened or damaged then they will most likely diagnose celiac disease). The villi may appear damaged by visual examination with the scope camera but it isn't enough to make a diagnosis. Right after my scope my GI doc said something like "it looks suspicious". But I was also partially sedated at the time.... :unsure:

For questions to ask the GI doc.....

-I'd ask if he is doing multiple biopsies of the small intestine (This is important since some parts of the intestine may appear fine while others are damaged).

- If your daughter has a choice (like I did) to be sedated or not, choose sedation for her! Trust me on this one. I had partial sedation for mine. The scope wasn't painful but extremely uncomfortable, and I gagged through most of the procedure. I'm assuming they would give complete sedation to a small child, but you never know.

- I would ask when to expect results and if he could go over them with you.

- I would also ask when you could start a gluten free diet with your daughter (If you want to try it). I asked and I started mine the day of the scope!

I wish your daughter luck on the scope! She'll do fine :)

-Carrie

0

Share this post


Link to post
Share on other sites

Hi! My daughter had a colonoscopy when she was 26 months old. She was extremely anxious about being in the hospital with all the medical staff. They gave her some versed orally, which completely calmed her. (Actually, they gave it to me to give to her so she wouldn't be afraid.) She just watched as they inserted the iv. NO crying. NO anxiety. My husband and I stayed with her while she was put under anesthesia. That was definitely the hardest part. Then we had to leave. The procedure was very quick, though she didn't have an upper gi done at the same time. She had a rough time coming out of the anesthesia, crying for about an hour straight. But, after that, she was back to her old self. I'm sure it's a lot harder on the parents than the child, especially if they can give her something to calm her a bit. The versed worked great!

Good luck. It will be over before you know it!

Sue

0

Share this post


Link to post
Share on other sites

My daughter had ear tube surgery at a similar age. Anything that involves putting a small child under is scary. For us, the surgery was very scary for the parents but not so bad for her. They let me hold her until she passed out, which helped her but made me feel terrible.

My suggestion would be to ask if you can be present immediately after the procedure for the recovery. If she is very upset by strangers this may make waking up easier. Also see if you can bring a favorite baby doll or toy to comfort her while being put under and during recovery. It seemed to help us.

It may make you feel better to know that however she reacts to the procedure, due to her age she will very likely remember NOTHING from the day.

Good luck!

0

Share this post


Link to post
Share on other sites

Wishing you and your little one good luck.My 15month old son's Endo and Sigmod is on Tues the 7th.I know they are taking 6 pieces for the biopsy and he will be sedated.The GI doc will tell us if he saw anything after the procedure as for the Biopsy results they will come back for us in less then 1wk.Take Care!

0

Share this post


Link to post
Share on other sites




Thanks for all the advice and support. In my logical mind I know it's a pretty quick, common procedure that carries few risks, but as a mom...well, what can I say...I'm a softy in that area! I know she'll be fine.

For the record, we are going to be doing a biopsy (will ask how many samples). I was told by the nurse that the sedation will be partial but deep. Not my first desire, but considering that I don't believe my daughter has been put under before (she was in the NICU at birth) it may be best to forgo general anesthesia unless it's totally necessary.

Wish us luck tomorrow morning. I'll post an update when things settle back down.

Thanks again for everything!

-Jen

0

Share this post


Link to post
Share on other sites
Wishing you and your little one good luck.My 15month old son's Endo and Sigmod is on Tues the 7th.I know they are taking 6 pieces for the biopsy and he will be sedated.The GI doc will tell us if he saw anything after the procedure as for the Biopsy results they will come back for us in less then 1wk.Take Care!

Just wanted to add that I wish you luck as well next week. I hope it goes well and they find the answers you are looking for.

-Jen

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,120
    • Total Posts
      919,468
  • Topics

  • Posts

    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
    • Couldn't have said it better!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,159
    • Most Online
      1,763

    Newest Member
    Anns
    Joined