• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Daisymouse

7 Year Old Diagnosed Yesterday

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
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.

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

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 :)

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

Share this post


Link to post
Share on other sites
Ads by Google:


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.

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?

Share this post


Link to post
Share on other sites


Ads by Google:


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

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!

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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
      108,888
    • Total Posts
      943,369
  • Member Statistics

    • Total Members
      67,095
    • Most Online
      3,093

    Newest Member
    Lindsey24
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello!  When I find myself up at odd hours, I put on this celiac disease Mozart for Meditation... https://www.amazon.com/gp/aw/d/B000VFQ58U/ref=mp_s_a_1_1?ie=UTF8&qid=1516086445&sr=8-1&pi=SX350_PI_PJPrime-Sash-Extra-Large-2017,TopLeft,0,0_AC_SX118_SY170_QL70&keywords=mozart+for+meditation+celiac disease And I get out my dot to dot book, like one of these for adults.... https://www.amazon.com/gp/aw/s/ref=is_s_ss_i_0_5?k=dot+to+dot+books+for+adults&sprefix=dot+t&crid=2B42N4PRIT56H Sometimes I knit mindless objects such as hats, washcloths or socks.  Knitting has a soothing rhythm to it and is easy to learn... Or I read a book about knitting and life... https://www.amazon.com/gp/aw/d/1603420622/ref=mp_s_a_1_2?ie=UTF8&qid=1516087016&sr=8-2&pi=AC_SX236_SY340_FMwebp_QL65&keywords=McPhee+knitting&dpPl=1&dpID=51fHYy2xXsL&ref=plSrch Or a knitting mystery.... https://www.amazon.com/gp/aw/d/B001LRLJUG/ref=mp_s_a_1_6?ie=UTF8&qid=1516087587&sr=8-6&pi=AC_SX236_SY340_FMwebp_QL65&keywords=knitting+mysteries&dpPl=1&dpID=51z43F8UuuL&ref=plSrch Knitting is really easy to learn.  I find it soothing to work with natural fibers, organic cotton for washcloths or luscious alpaca for socks...  But I find it inadvisable to shop online in the wee hours...  😸 I've got way too much yarn now...hee hee hee...  besides, the light from electronic devices keeps your brain awake longer.... Hope this helps.... Knitty Kitty  
    • My only symptom was slight nausea. Lasted 6 months before it started to only happen if I ate too much food in a sitting. I would eat simple, bland foods and eat 6 small meals instead of three big ones.
    • I've lost some of my sense of taste due most likely to zinc deficiency from not eating beef for a couple of years. Zinc supplement doesn't seem to help, but eating .5 to 1 lb of beef per day definitely does help. I noticed a positive change within days of eating beef. I don't know if your diet includes beef, but if it doesn't there's a reason for you.   Zinc and Geographic Tongue
    • I was in your same boat when I was diagnosed. Terribly fearful of cancer and all the damage I unknowingly had done. I don’t cheat, but I’m not as good as I need to be at restaurants (I only order off gluten-free menus but I don’t talk to managers like I should, etc) and I eat out once a week with never having symptoms. My main symptom is absolute, complete brain fog. I am truly not the person I used to be. I’ve always had anxiety, so that wasn’t any worse, but I hate to say this about myself but i got “dumb”. It was my first week in nursing school when I was diagnosed. What a great time, huh? I had to stay at school until midnight-2am 4 nights a week just to try to focus and control this brain fog. I used to be smart, quick witted, and very present in the moment. I know life changes, but my life is busy yet very peaceful and I struggle with this daily. I can’t comprehend medical concepts quickly like before and it’s very depressing. I also have a pretty good diet but have weighed 165 (I’m 5’4”) for three years with doing cardio, training for marathons,  etc..nothing gets this weight off (have had thyroid issues since age 7). Anyways. You are not alone. My doctor diagnosed me 5 years ago and told me to stay gluten free and I never saw him again! No follow-ups... I had no clue I had to! Anyways, I have an appointment upcoming as well.  Best of luck to you ❤️
  • Upcoming Events