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.

Daughter Starting Kindergarden In September Need Advice
0

6 posts in this topic

Our daughter is starting kindergarden in September, and we are very nervous. My husband and I are both teachers, so even thoug people tell us it will be okay we know the reality when you have so many kids in a class.

Our main concern is a lack of diagnosis, just our experience.

Age around 26 months sent to gastro for chronic diarrhea losing lots of weight. Turns out she was horrifically constipated, the diarrhea was stuff leaking out around the blockage. Asked about celiac after many visits to hospital, being told she's okay it's just a bug. ( seriously, green water for poop for months and losing weight is just a tummy bug! No one else got sick!)

Put on peg for 3 months, no real change.

Blood work okay so told keep on suing peg.

Mhorrific behavior, thought it could be because of the new baby. Rash we were told was except that nothing would get rid of.

Finally gastro listened and agreed maybe gluten was an issue. As before all bloodwork was okay, but she has genes for celiac.

Age 3 finally see gastro at local kids hospital, who diagnosis her with reflux. Says he doesn't need to scope her to rule in/or put celiac. Just give her Zantac. Zantac only made her sleep.

Finally we decided to try gluten free out of desperation. 2 weeks later she was like a new child. Went back to gastro who apologized said he was obviously wrong. Said it was a shame she was off gluten as that meant he couldn't scope her, and given how she had been, to never give her gluten again, and that a gluten challenge was out of the question as it could kill her.

Fast forward to now....

How am I to get school to take me seriously with the no gluten issue, when all the doctors will write is MAY have a gluten sensitivity?

Gluten makes her I'll for at least a week, we are not talking sore tummy here either, think crying 22 hrs a day for dys on end, bloating, diarrhea, aggressive behavior, vocal tics, scratching her "excema" till she bleeds, fatigue for a few weeks.

If she misses too much school we are worried she might get held back a grade as she is already only 2 weeks before the cut off date, and she is a child who does not need to be kept back, she was assessed in a university infant study as having the cognitive age of a 6 yr old at age 3 yr 9 months!

How do we get the school to take us seriously?

How do we get them to understand the effect gluten has on her if no doctors will back us up besides our pediatrician ( who can't write a letter contradicting the gastro!)?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Three thoughts:

1) go back to the GI and ask him to formalize the diagnosis and provide you with paperwork to give the school

2) private schooling

3) home schooling (depending on what state you're in)

0

Share this post


Link to post
Share on other sites

if the gastro won't write "celiac", will he put his opinion that gluten would kill her on paper.....d%mn, that should be enough!

1

Share this post


Link to post
Share on other sites

Teachers don't want to deal with vomit, behavior issues, and possible projectile vomit.  Someone with common sense would make sure your child avoids gluten to make their life easier. 

 

I am concerned that your child was never scoped to rule out other related to Celiac issues.  Zantac made your child sleep, but did it actually help in other ways?  Please keep a food journal to be on the lookout for other food intolerances.

 

Try to formalize medical note from doctor.  Will the doctor give a diagnoses with positve genetic test and positive reaction to the gluten free diet?

0

Share this post


Link to post
Share on other sites

She has had a positive genetic test and grew 3 inches and put on 4 pounds in 3 months gluten free. Our original gastro wanted a scope to rule out or rule in celiac but because the gastro deptbat hospital say no, that's the end of everything, no diagnosis, no chance to find out what is really going on, which sucks as her dad has Crohns and it would be nice to know whether that is an issue or not

We have an allergist and a child nutritionist be ause she used to have allergies, milk and soy cause issues when taken in large quantities, but we tend to avoid them

0

Share this post


Link to post
Share on other sites




Can her pediatrician not give the diagnosis?

We are under the care for my 24month old  with the gastro, but my pediatrician is fighting for me as well that if the gastro won't make the diagnosis, she will do it for school and daycare purposes.

 

You have more than enough evidence of gluten being a source of medical distress for your child, the gastro should give the official word and continue monitoring and testing in the future if he is waivering on the permanent diagnosis.

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
      103,387
    • Total Posts
      917,575
  • Topics

  • Posts

    • New Celiac Doctor - Atlanta/Duluth, GA
      I can't help you with finding a new GI, but I can empathize with driving the 400!   I have family in the Northern Atlanta area and visit often.   How horrible that your account was so mis-managed! 
    • New Celiac Doctor - Atlanta/Duluth, GA
      Hello! I have Celiac Disease (confirmed by blood tests and endoscopy done in 2013) and was going to a doctor at Atlanta Gastroenterology Associates until the end of last year (2015) when they started charging me for things that happened in 2013 - two years late. I had since changed insurance and was forced to pay out of pocket for the charges or be sent to collections. All in all, I loved my doctor there, but was very unhappy with the way the billing was managed.  So, I found a new doctor and have seen her once. I like her very much so far, but have recently moved and my home is so far from her office it often takes me 1-2 hours to get there with Atlanta traffic. (Her office is at Emory St. Joseph's hospital.) I should say one of the reasons we moved to Duluth was to get away from Atlanta traffic. I don't want to change practices, but I'm considering it. Does anyone out there live in North Atlanta? Alpharetta, Lawrenceville, Duluth, Suwanee? And have a doctor in the area they would recommend that is NOT associated with Atlanta Gastroenterology Associates? I would rather drive 5 hours to see a doctor than go back to that group, no matter how good the doctors are! Any recommendations are welcome!
    • Sjogren's, Celiac, or both?
      Welcome!  Unfortunately, you would have to go back on gluten to get tested (8 to 12 weeks for the blood test and 2 to 4 weeks for the endoscopy).  Here are the tests: http://www.cureceliacdisease.org/screening/ I am sorry that your doctor is so mis-informed! There are over 300 symptoms attributed to celiac disease and some celiacs are considered "silent" with no symptoms at all!  I personally was anemic and had no tummy issues that I was aware of at the time of my diagnosis.   There are other forum members who have Sjogren's who might have some good advice (@Gemini).   I wish you well!  
    • Sjogren's, Celiac, or both?
      Hi! This is my first post here. I'm wondering if anyone else has had a similar experience. I'm in the diagnostic process for Sjogren's, which my rheumatologist is very sure that I have even though my dryness symptoms are very mild. (I am positive for SSA, the autoantibody associated with Sjogren's.)  The symptoms I initially went to my GP with are: fatigue, hair loss, irregular menstrual cycle (very unusual for me), headaches (migraines, almost daily), elevated temperature, weight loss My GP did not do the blood test for Celiac disease. She opted not to because when she asked me if I had loose stool, I said "No, actually, I've been constipated every day for the last 10 years." She said, "Ok, no Celiac then."  ???????? During the diagnostic process, I also lost a pregnancy.  When I eliminated gluten because of recommendations from the Sjogren's Foundation website, almost all of my symptoms disappeared. I still have the hair loss, but no headaches, fatigue is better, cycle is regular, and I'm back to my normal weight. Even my temperature is closer to my norm. I feel like an entirely new person. I still sometimes have mild dryness symptoms but nothing that would have prompted me to go to the doctor without the other symptoms. Should I make an appointment with my rheumatologist and try to get tested for Celiac disease? Has anyone had a similar experience? And how hard do you think it will be to get tested? (Like most doctors I've worked with, my rheumatologist likes to be the one who makes the suggestions.) Thanks for any input! Kristen
    • frustrated and not feeling well
      Hello, how long did it take to get back up? I quit the pepcid and started iron but the ferritin dropped from 74 in December, to 49 in March and 33 a couple of weeks ago. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • 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
    • 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
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,524
    • Most Online
      1,763

    Newest Member
    Edav009
    Joined