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 In The Newspaper
0

8 posts in this topic

Hey everyone! I just wanted to say hello, I hope everybody is doing well. I wanted to also share with you the newspaper article that the Flower Mound Leader did on my daughter (Kylie for those of you who don't know us). This is a local paper here in Texas, and I am really happy they took the time to listen to our story and wanted to publish it. You can simply go to the website, and scroll down to the article titled, "Sick toddler raises awareness of disease". Hope you enjoy!

Flower Mound Leader

0

Share this post


Link to post
Share on other sites


Ads by Google:

Oh my goodness, what an ordeal your family has been through!!!

I am so happy Kylie is on the road to recovery with the gluten free diet. I can't imagine how I would survive knowing I had a medical bill like that over my head..... especially when it should be the last thing you have to worry about. It is not fair that you would have to worry about that when you should be concentrating 100% on your daughter.....

Makes me remind myself that I am thankful for Canada's health care system, even though it has its faults of its own!!!

My prayers are with you that this is the end of your ordeal and she is now healthy, strong, lively and thriving......

Hugs from Canada,

Karen

0

Share this post


Link to post
Share on other sites

This is something my mom wrote a long time ago that was publeshed in the San Jose Mercury News in 1998 about when I was sick.

seven years ago, a family discovered firsthand the most precious gift of all

By Debbie Duncan

For years I had seen reports on the evening news of the Doobie Brothers' annual concert at Children's Hospital at Stanford. While the hospital is no more than two miles from my home, I always thought of it as a world away from my life and experiences. I had chlidren -three in fact- but they were all healthy. Until 1991.In mid-November my third child, 17-month-old Molly, stopped walking, talking, eating, playing, smiling, living. My husband, Bill, and I knew something was wrong, but we didn't know what. Neither did the doctors. Molly's helth was slipping away day by day.

Finally, in the middle of December, we decided to have her admitted to the new Lucille Salter Children's Hospital at Stanford for two days of round-the-clock tests. It was indeed a different world. In the playroom on the first day I met a mom and her 2-year-old; the little girl had just had a brain tumor removed.

The hospital hallways were wide, which was helpful because of all the IV poles and wheelchairs rolling from place to place. Molly had an MRI at midnight down the hall at Stanford Hospital. When she wasn't sedated for a test she cried for me to hold her. I tried to write Christmas cards because they had to be done, but I made little progress.

Our older daughters visited in the evening and worked on art projects with voluenteers. The girls didn't finish the tile they had been given to decorate, so I etched their names - Jennifer, Allison, and Molly - Into the clay after Molly feel asleep in her big hospital crib. The next day she was examined by more physicians and equiptment. In the afternoon a cheerful voluenteer came to our room to tell me about a special event, the Doobie Brothers' Christmas concert. "Would Molly like to go?" she asked. "She's just a baby," I replied. "But we don't have our next consultation until 6 o'clock." "Then come," the voluenteer said encourangingly, "it starts in about 15 minutes."

I met my new friend, the mother of the child who had had the brain tumor, in the hall. The toddler was sitting up in a stroller, her head wrapped in bandages. Molly slumped over me shoulder as I carried her downstairs.

"Oh good," the voulenteer told us when we arrived in the cafeteria. We saved the front row for infants and toddlers." They seated me about 10 feet away from the band. Other patients and their families surrounded us on three sides - kids attached to bags and poles, kids who had lost their hair from chemotherapy

A BLURRED PICTURE

The TV cameras were also wedged into the front of the crowd. When the Doobies started to sing "Oh-oh-oh, listed to the music," I suddenly thought, I don't beling in this picture. I'm supposed to be home watching the story on the news, not sitting here wiht a desperately ill baby who can't lift her head (The girl in teh stroller next to us was up and smiling.)

At that moment I knew Molly was really, truly sick. I felt tears welling up in my eyes, and I could also feel the cameras zooming in on me. I knew the cameramen were thinking, what a good shot. Soon tears were streaming down my cheeks.

We stayed in the front row thorughout the concert. I even managed to smile when I saw the band members use word sheets to lead the Christmas carol sing-along. At 6 o'clock Molly and I were back in our room with her sisters and dad, waiting for the doctor'r report. Bill turned on the news. The attending physician arrrived with "inconclusive" results. While I was talking with him in the doorway, 4-year-old Allison cried, "Mom, you're on TV!"

"WOW, mom," 6-year-old Jennifer chimed in, "you're famous."

I squeezed my eyes shut so my daughters couldn't see the tears. I didn't want to be famous. I wanted to be home and have my baby healthy again.

DIAGNOSIS

That Christmas Molly and I were home, but she was far from healthy. Christmas was a blur to me; picturtes of her show a wan, sad baby looking out from my arms with big, vacant eyes. Eight weeks and two hospitalications later, the diagnosis was finally made: Molly had Celiac Disease, or intolerance for the gluten in wheat, oats, barley and rye. She had been slowly starving to death.

Within a week of starting her new diet, Molly was actually smiling. Physical therapists taught her to walk and play again. We celebrated Christmas after coming home from the hospital the last time. It was the end of February.

Molly is 8 1/2 now. She follows a strict gluten-free diet, but other than that she's a normal, happy, healthy third grader. This month we decided to buy Packard Children's Hospital Christmas cards. Molly wanted to go with me to the gift shop. She punched the "UP" button on the elevator from the garage, and ran to the hospital entrance to jump on the spot that opens the aw=utomatic doors. (Molly rarely walks these days: she runs, bounces, or jumps everywhere she goes.) She made a dash for the tile-covered pillars. "There's our tile, mom," she pointed out. "With out names on it - up at the top."

Once again I felt tears filling my eyes there were no television cameras to record the event; this moment was private. Still, I could almost hear the Doobie Brothers singing for us. I reached for Molly's hand, and we strolled into the gift shop to select our family's Christmas cards.

0

Share this post


Link to post
Share on other sites

It's great that your story is getting out.......I've heard numerous cases on the boards about people's stories getting published in local newspapers. Congratulations. That is quite a story. This is how we're going to educate people about the disease.

0

Share this post


Link to post
Share on other sites

That's an awesome story, sounds a lot like mine which I posted above

0

Share this post


Link to post
Share on other sites




Molly,

As if my story doesn't make me cry enough!!!I am so glad that you were finally diagnosed and I am so glad that your mother must be as relieved and grateful as I am to have a healthy child. Thanks so much for sharing your story!

0

Share this post


Link to post
Share on other sites

She also wrote a book, "When Molly Was in the Hospital, A book for brothers and sisters of hospitalized children" It's not in bookstores anymore but you can get it on Amazon, byt Debbie Duncan

0

Share this post


Link to post
Share on other sites

Thanks everyone.

This insidious disease is much more common than people want to believe. My partner died in July, having Celiac Disease and Herpetiformis. His family still doesn't believe Celiac is life threatening. His having to stay away from gluten was a joke with them.

While I was cleaning up his hospital room, he was transported home. When I got home, his family had, already, bought beer, and gave it to him. Yes, he was sick with liver disease and complications from pain medication, but, how could they give him beer?????????? he did pass away 5 days later.

No amount of discussion helped. They said he was going to die anyway and encouraged him to drink beer.

Perhaps, if, articles like these had been printed in our area, they might have listened to me better.

I will save this article, because, his daughter, soon to be married, may have a child someday, who could be at risk.

Sometimes, I think of not coming to this site anymore, because it doesn't involve me, anymore. But, you know, it does involve all of us. I have come to the conclusion that I need to keep abreast of what's going on. Someday, I may be able to help someone with my information.

Thanks Celiac Message Board for helping vent and grieve.

Faith

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
      103,346
    • Total Posts
      917,413
  • Topics

  • Posts

    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
    • Will my doctor test me? So many symptoms...
      Welcome, @iwillmoveamountain! Of course you are not wrong to pursue getting testing for celiac. My advice is to drop that doctor and find a new one, preferably one who is celiac savvy, and who will listen to you and test you for the disease.  
  • 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
      60,482
    • Most Online
      1,763

    Newest Member
    Jiifigment
    Joined