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.

7 Year Old Diagnosed Yesterday
0

11 posts in this topic

My 7 year old was diagnosed yesterday - her celiac blood panel came back postive. Her symptoms are sloshy belly, going potty during meals, and very small stature.

The Family Dr said for us to seek a pediatric GI. I found one and set up an appointment for 12/6. I asked if she could go gluten-free now or if we should wait until after the appointment. I was sent to the nurse and left a message, waiting on return.

I have two questions 1) why does she need to see the GI, we have the diagnosis, shouldn't we start the diet? and 2) what are they going to do that the GI - after a panel has come back positive?

Thank you so much for your help. I have been reading the board a ton the last two weeks and have gained so much knowledge.

~Missy

0

Share this post


Link to post
Share on other sites


Ads by Google:

What was her panel results?

Most celiacs go to a GI to help keep track of how they are doing healing wise. At the GI, they could do an endoscopy which would check for damage in the small intestine.

Do you want to do the Endocscopy or not is the question now. If so, keep her on gluten until it is done and if not, start the diet.

Also, you will need to get accomodations at her school via the 504 plan. Those with celiac, for example, cannot play with brand name playdough because it contains wheat. The same goes for lunch time and what have you. There will be other things as well that this falls under that i cannot think of right now.

0

Share this post


Link to post
Share on other sites

I want her to feel better. Is there value to the Endocscopy if we already have a diagnosis?

~Missy

0

Share this post


Link to post
Share on other sites

Yes, there is value in determining the damage to her digestive system. Is it essential - NO, although many doctors will not officially diagnose without it.

Do you know if your daughter had a complete celiac blood panel? Any nutrient testing - Celiac Disease prevents proper digestion/absorption of key nutrients - it is essential to monitor these.

If all blood tests are complete, it really is up to you when to remove gluten. If you are unsure which tests were completed, request written or electronic copy of all her blood work (this is a good idea for any/all medical testing). Feel free to post her results here if you have any questions.

I would recommend calling the GI's nurse again and let her know you understand the reason to remain on gluten is for further testing and ask if it would be possible to schedule an earlier appointment or be placed on a cancellation list as your daughter has serious symptoms and you would like to remove gluten as soon as possible.

It is a good idea to meet with the Gastroenterologist before removing gluten - preferably one that has training and practical experience with Celiac Disease.

Hang in there :)

0

Share this post


Link to post
Share on other sites

Thank you so much! Yes, I want her to be the healthiest she can be. I am an "act on it now" kind of girl, and feel at a loss of control. We have been dealing with her weight for 7 years and I feel like there is a light at the end of the tunnel. I know they did a full celiac panel and food allergy test. I will request the results. I will call the nurse back and leave another message.

Thank you for your help, I know I will be back with more questions. Can't wait until I am able to post answers because of knowledge :-)

~missy

0

Share this post


Link to post
Share on other sites




Completely understand and feel free to ask questions - it really is the best way to speed the frustrating transition process. If you haven't yet, take a look at the "Newbie 101" thread - it contains loads of useful tips.

Welcome to the forum Missy!

Oh...forgot to add. Celiac Disease is genetic - you, her father along with any siblings should have full celiac blood panels every 3-5 years - more frequently if any symptoms arise.

0

Share this post


Link to post
Share on other sites

Do you have to go to that GI? My 4YO has to wait a long time to get into a celiac specialist but a regular GI is doing the endo sooner. I think its terrifying to have these young kids starving for these tests. If she loses more weight, is listless, maybe a trip to the ER at a local childrens hospital will get her scoped sooner?

0

Share this post


Link to post
Share on other sites

The nurse called me back. Yes she has to stay on gluten as normal - everyone was correct, thank you! And luckily there was a cancelation so our 12/6 appointment got moved to 10/30. Yay! We are seeing a pediatric GI for consultation and then he will do the scope on the soonest Friday that he can fit her in. My blood work will be done on Monday. I will ask about getting my son's done as well. My husband luckily has no symptoms and doesn't have any other autoimmune, so he will bring it up at his next physical. I personally have hypothyroidism and sjogrens.

Thank you all for you help, now I am going to jump over to the Newbie 101 thread :-)

~Missy

0

Share this post


Link to post
Share on other sites

OH wow good news :) I had to wait 3 weeks for mine.

You might wanna look into a genetic test too.

0

Share this post


Link to post
Share on other sites

That is very good news :)

Glad to hear you are being tested as well...many of us have multiple autoimmune disorders as AIs tend to run together. You may find removing gluten improves your Sjogren's and Hypo symptoms. Should your celiac tests be negative it would be a very good idea to remove gluten from your diet along with your daughter to monitor for symptom improvement/resolution.

You likely were already tested for the antibodies found in Hashimoto's Disease (Autoimmune Thyroiditis) given your hypothyroidism, but just thought I'd mention it as I have a minor disbelief that doctors will automatically run proper tests ;) If they haven't been run you should be able to add them to your list for Monday.

Have a great weekend!

0

Share this post


Link to post
Share on other sites

Glad to hear that you could get in much sooner.

So you know to keep her on gluten until you see the GI/have the endoscopy but now is a good time to sample some gluten free items or try out some recipes. That way you'll be a bit more prepared when you take her gluten free and already have a bit of experience under your belt.

Good Luck and Welcome to the forum.

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
      103,599
    • Total Posts
      918,313
  • Topics

  • Posts

    • Washing Dishes
      Gluten is a very sticky protein that cannot be removed easily. Non porous items can be washed safely and effectively, being very careful to throughly rinse, use a dedicated sponge/washcloth to wash. If washed by hand wash and rinse under hot running water not in a sink of water if you don't have a dedicated gluten free kitchen. My kitchen is totally gluten free and I still rinse under running water. I attempted to use the dishwasher for the first time yesterday and I feel like I've been glutened so I'm not sure if it's safe or not. There was no gluten containing dishes in it, but it's a rental house so God knows how the previous tenants used it and whether there may be any lingering gluten in it. I also have other issues that cause a lot of the same problems so I'm going to keep trying to use it for a few days and see if I continue to feel glutened or not. As far as counter tops, sinks etc, any non porous surfaces can be wiped clean, but it takes multiple wipe downs with multiple sponges. Thoroughly wipe down and rinse out the sink to rid it off any lose gluten particles. The same thing I did when first going gluten free. Only the kitchen I had then had laminated counter tops that were all scratched up. There is no getting gluten out of those kind of counter tops or cracks around the sink, etc. The ONLY way to possibly destroy/remove gluten from surfaces it's stuck in is to heat it above temperatures most things cannot tolerate and not all ovens can reach. You're looking at like 600°-700° F for a minimum of 30 min. So some stuff can be effectively cleaned in the self cleaning mode of an oven if it has one. Most cookware and utensils cannot tolerate those temperatures though and it's impossible to heat counters and other items to that temperature. Therefore being in a blended house is very risky if not done right. When I went gluten free everyone in my house went gluten free. Except the fish, you can't find gluten free fish food. My husband who shouldn't eat gluten anyway is gluten free and all our animals are on a grain free diet. Even my snake is gluten free since I breed my own feeder mice and feed them a gluten free organic diet. 
    • to biopsy or not?
      A small suggestion........for banana bread, try the King Arthur gluten free banana bread mix.  Yeah, I know......it's a mix but sometimes, time is short and a mix works well.  My husband and I were shocked at how good this is!  it rose up high and beautiful in the oven and has a really good banana flavor to it.  Really....give it a try.  It is so easy to make also! http://www.kingarthurflour.com/shop/items/gluten-free-banana-bread   The ATK cookbook is a keeper for every Celiac!
    • Oat Flour making me sick?
      Yup.....what she said!  In non-porous materials such as stainless steel or aluminum pans, a good washing is all you need to make the pan safe to use.
    • Hawaiian-style BBQ Shrimp (Gluten-Free)
      Mayonnaise is the key to this recipe, which delivers tasty, tangy, golden grilled shrimp. View the full article
    • Oat Flour making me sick?
      I wouldn't be afraid to use a stainless steel pot that other things had been cooked in AS LONG AS YOU WASH THEM VERY WELL before making her food.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,701
    • Most Online
      1,763

    Newest Member
    AbbieLee88
    Joined