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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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
      103,337
    • Total Posts
      917,377
  • Topics

  • Posts

    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,470
    • Most Online
      1,763

    Newest Member
    Kiwiana
    Joined