Pages

HTML/JavaScript

Wednesday, May 27, 2015

Sweet Faces of Celiac Disease: Meet Kaydee

Kaydee is 11 yrs. old and was diagnosed     with celiac disease at 9 yrs. old. 

At what age was your child diagnosed with celiac disease?

9 yrs. old

What symptoms was Sarah having before being diagnosed?

Kaydee had horrible stomach aches almost every day during the fourth grade. Nausea, constipation, eczema, failure to thrive, brain fog, depression and anxiety were also problematic.

Any other family members diagnosed with celiac disease?

After Kaydee's diagnosis we were able to conclude that her older brother also has celiac disease.

How has Kaydee’s life changed since being diagnosed?

She still struggles with headaches. The difficult part has been the emotional aspect. Not being able to participate in parties, school activities, not being able to go out to eat. She feels alone and recently she said its said realizing she will never be able to have the foods she loved. We are still trying to get her health back. It's a long and difficult process...

Being that 83% of those with celiac disease are UNDIAGNOSED, what are some ways we can encourage more awareness of the disease and its multiple symptoms?

I think schools need to be educated in this disease. It needs to have the same respect as something such as diabetes. My daughter has been left out of school activities and bullied. I really feel teachers and school administration needs to go to some sort of training. The lack of education and compassion is upsetting.

Thank you mom for sharing Kaydee's story. I'm sorry to hear she is feeling bummed, but I hope she is feeling so much better and her headaches will subside soon. This is when our role comes into to play and we have to be the POSITIVE, uplifting support system for our children. One day, maybe sooner than later, she will embrace it and teach others, even the bullies, about this disease that affects 2.5 million people. 

Friday, May 22, 2015

Sweet Faces of Celiac Disease: Meet Ashlee

Ashlee is 5 1/2 yrs. old and was diagnosed with celiac disease at 4 years old. 

What symptoms were you or your child having before being diagnosed?

Ashlee's symptoms started at 3. It took us almost 9 months to get diagnosed. The biggest symptom was one day when she couldn't move; it took 2 hours for her to be able to move. She went to the doctor 40-some times in that 9 months. The doctor kept giving my daughter antibiotics claiming she had UTIs and I wasn't sure that was the real reason for her pain especially because she kept complaining of stomach aches. I brought up my husband's stomach issues (he had bleeding ulcers a long time ago) in hopes it would lead us down another path - and it did, at the children's hospital with a GI doctor where she was diagnosed (off the charts) that day! They don't think she had ever digested her food. Looking back, I realize she also had a protruding belly that we missed.

Any other family members diagnosed with celiac disease?

No.

How has your life or your child's life changed since being diagnosed?

She is so much happier. She no longer visits the doctor several times a week. She no longer complains about stomach pains (unless she is glutened which is rare - she now projectile vomits when glutened, too). She doesn't enjoy being "different" from her friends but they seem to enjoy being like her and often claim they have to eat gluten-free too; it's pretty cute. She will start kindergarten in the fall and we know a new journey awaits.

Being that 83% of those with celiac disease are UNDIAGNOSED, what are some ways we can encourage more awareness of the disease and its multiple symptoms?

I talk to people about celiac disease constantly whether through my blog (itsallaboutty.blogspot.com - click the giant Celiac Disease button) or on Facebook. We participate in the FARE Walk and we teach people at school, church, anywhere we go. People are just so unaware; most are willing to listen if you just take the time to explain to them. I think it does help that I have a child with it. 

Thank you Mom for sharing Ashlee's story. Being persistent and doing everything we can as parents to get our child on the right path to being healthy is all we can do! Thank you for raising awareness of celiac disease and I'm happy to see Ashlee smiling! :)

Wednesday, May 20, 2015

Sweet Faces of Celiac Disease: Meet Ryan

Ryan is 6 yrs. old and was diagnosed with celiac disease 
at 18 months old. 

What symptoms was your child having before being diagnosed?

Belly pain, failure to thrive (he stopped growing at 9mo.), irritability, the foulest smelling diarrhea ever several times a day, which lead to horrible diaper rash, he was sick with colds all the time and rarely slept through the night.


Any other family members diagnosed with celiac disease?

Nope. No one.


How has your life or your child's life changed since being diagnosed?

Ryan's life has changed for the better.  He feels great now and is a happy, well adjusted kindergartener.  My husband and I have had a much harder journey.  Initially, we knew nothing about celiac or gluten nor did we know anyone who did.  We had to research and figure out everything on our own.  Four years later, we have it down.  We are not able to be as spontaneous as we used to be but that's our life.  I have channeled the energy I used to spend worrying/being upset into our local CDF chapter.  It has been so therapeutic for me to help others on their gluten-free journey.


Being that 83% of those with celiac disease are UNDIAGNOSED, what are some ways we can encourage more awareness of the disease and its multiple symptoms?

Social media can be great to reach those who may not be exposed to celiac otherwise.  I posted a list of the more random symptoms on my Facebook page one day and a friend contacted me for more info because she has several of them.

Thank you Mom for sharing Ryan's story - what a cutie, I mean, handsome young man. ;) Keep advocating and helping others - like you said, channeling the negative energy and worry into helping others, is very therapeutic! 

Tuesday, May 19, 2015

Getting Children Screened for Celiac Disease

My son Jack was diagnosed with celiac disease at the young age of 2 years old. He is now, a happy, healthy almost 8 year old boy. 

When Jack was diagnosed in 2009, we had never heard of celiac disease, nor had any of our family and friends. The day before getting the call from the doctor that Jack had a celiac disease, I was talking with my friend on the phone and she did mention celiac, she said, “My friend’s mom was diagnosed with celiac, where she can’t eat gluten, hopefully, it’s not that.”

My son Jack was one of the lucky ones. He was diagnosed immediately. At his 2 yr. well check appointment I mentioned some things that were going on with Jack - diarrhea, irritability, laying around a lot to his pediatrician. She said, “I think we’ll go ahead run some blood work just to rule anything out.” Little did I know, a celiac panel was to be done.

When I say, Jack was one of the lucky ones, that’s because many children are undiagnosed many times over. They are sent home, told to try this and that, when they are actually living with an undiagnosed autoimmune disease.

Due to the multiple symptoms of this disease, many parents are driving back and forth to the pediatrician’s office, complaining about the same symptoms, but nothing is being done.  Jack had the “classical” symptoms of celiac disease. Unfortunately, many children do not. As I read stories from my Sweet Faces of Celiac Disease campaign, I noticed that many children had constipation. Constipation is a classical symptom as well, but many parents and children are sent home and told to take Miralax (laxative) and it should pass. Of course constipation can be common in small children, as many are picky eaters and not getting enough fiber in their diet, or enough fluids, but as a pediatrician, why not rule out celiac disease?

My hope is to raise awareness among parents so they can be aware of the multiple symptoms of this disease, and ask the pediatrician to order a celiac panel. A celiac panel is a specific group of blood tests that detect celiac disease.

I do feel that the majority of pediatricians are paying more attention to celiac disease, especially with the gluten-free boom in the past five years, but unfortunately, there are still many children that are going undiagnosed for too long.

When talking with your pediatrician, make sure he or she is knowledgable about celiac disease and it's symptoms - here are some PEDIATRICIAN RED FLAGS:

- "He's not having diarrhea, so I don't suspect celiac."
- "If he's just having constipation, it's not celiac."
- "He must still be getting over the stomach bug."
- "Just keep giving him Miralax."
- "He's too young to have celiac disease."
- "We don't test for celiac disease before 2 years old."
    (Children are being diagnosed as young as 1 yr. old)

SHARE this with friends and family for Celiac Awareness Month.

Thursday, May 14, 2015

Sweet Faces of Celiac Disease: Meet Jessica

Jessica is 11 yrs. old and was diagnosed with celiac disease                at 18 months old. 


What symptoms were you or your child having before being diagnosed?

Jessica was vomiting and having diarrhea. She was also malnourished and lethargic, as well as having muscle wasting, nerve problems and regression of her motor skills.

Any other family members diagnosed with celiac disease?

No.

How has your life or your child's life changed since being diagnosed?

Dramatic improvement within days of her diet change. Jessica is happy, healthy and flourishing now.

Being that 83% of those with celiac disease are UNDIAGNOSED, what are some ways we can encourage more awareness of the disease and its multiple symptoms?

I believe it needs to be part of your initial check at a doctor when first presenting with any symptoms. This would've eliminated months of pain for our family.

Thank you Mom for sharing Jessica's story. Diagnosed at such a young age, like Jack. I'm happy to hear Jessica is flourishing - she's a vibrant, beautiful young lady. And she has hair to die for!! ;)

Tuesday, May 12, 2015

CDF Conference and Expo 2015 Recap - Top 10

What can I say? The Celiac Disease Foundation Conference and Expo was a HUGE success! It was a weekend FULL of resourceful information from expert speakers, meeting new gluten-free friends, trying new products and talking with children and their families about living with celiac disease.

I think the best way for me to share this packed weekend with you, is to share my "Top 10" from the weekend. It's a long post, but that's because I have SOOOO MUCH to share with you!

#10 - Conference Highlight

Dr. Joseph Murray discussed "Celiac Disease 101" - he covered everything! Here is just a bit of information I found helpful:

Management Plan:

- Explain the disease
- Strongly advocate a gluten-free   diet
- Refer to expert dietitian
- Check bone density
- Identify and treat deficiencies
- Calcium and vitamin D                 replacement

What's on the Horizon:

- Screening targeted at risk              groups
- Point of care tests (finger stick)
- Biopsy avoidance for diagnosis
- Prevention (infant feeding)
- Tests of adherence
- More accurate genetic                   prediction

Why do we need a drug:

- Relief of ongoing symptoms in treated patient doing their best on gluten-free diet
- To accelerate the response of symptoms and immune markers and healing in patients untreated           celiac
- To reduce risks of long term consequences of ongoing inflammation
- Refractory celiac disease
- Reduce burden in treated patients to permit some degree of gluten exposure



#9 -  Expo/Exhibitors

With over 100 exhibitors, the expo was FULL of goodies to share. Pamela's showcased their new graham crackers, while Cheerios and Chex shared their gluten-free cereals. As you may know already, Cheerios is going gluten-free and will launch their GF cereals in Fall 2015. 


And here are a few others who were in attendance: Crunchmaster, Enjoy Life Foods, Way Better Snacks, Breton Crackers and Lucy's. The Scratch & Grain cookie kit is featured is the Crafted Gluten-Free - which is a monthly gluten-free subscription box.. I was so excited when Crafted Gluten-Free so kindly gave me a box of Scratch and Grain Cookie Mix! If you've watched Shark Tank on TV, you may recall, that Scratch and Grain were featured on there - I even emailed them after watching the show - so I'm super stoked to make their cookies. More to come on Crafted Gluten-Free, so stay tuned!


#8 - Swag Bag

Before entering the expo, you receive a bag that has gluten-free goods in it - just look at the picture below on the left - that's how you start!! And then, look at the picture to the right, that's what you come home with! People were walking around with LOADS of gluten-free goods in their bags! I've never seen bags so FULL!















#7 - CDF launches Gluten & Allergy Free MarketPlace 

The Marketplace showcases products and services from companies that care about the gluten-free and allergy-free community, and have made a deep commitment to supporting CDF’s mission of diagnosis, treatment, and a cure for celiac disease.
The Gluten-Free Allergy-Free Marketplace allows consumers to browse by dietary preferences, including special medical, dietary, and religious requirements, and view product pictures, ingredients, and nutrition facts. 
Gluten-Free Allergy-Free Marketplace app for Apple’s iOS will be available in the second quarter of 2015. An Android app is planned for the fall.

#6 - Meeting children living with celiac disease

Having an opportunity to talk with children about living with celiac disease is something that I am truly passionate about.  I try to bring a smile to their faces, if they aren't smilin' already and encourage them to keep up the good work. One day, Jack will attend one of these events with me and he will be able to see all the other children living with celiac disease as well. They are the next generation of advocates, we must be their voice and encourage them to stay positive and continue living a healthy gluten-free life.

Just look at some of these sweet faces from the expo!


#5 - Location - Pasadena, CA

The CDF conference & expo was held at the same location as last year, the Pasadena Convention Center.  The convention center was in walking distance from my hotel with an outdoor mall right across the street.  There is plenty of shopping and dining available - P.F. Chang's, which is a perfect gluten-free spot for lunch or dinner.










#4 - Raffle Prizes

Raffles prizes were given throughout both days at the expo. Fabulous baskets as you can see below from Pamela's, Glutino, Mia's Kitchen and more. The picture below is just from 1 day of prizes. Raffle tickets could be purchased and if your name was called, one of these lovely baskets was yours! A fun way to donate money to CDF. Thank you to all the exhibitors who participated.


#3 - Blogger Friends - New and Old

I love meeting up with old friends and meeting new ones. I had an opportunity to hang out with some awesome GF ladies. I've known Erica, Celiac and the Beast, for a couple of years now. She's witty, funny and knowledgeable about celiac disease and gluten-free living. She often speaks at these expos and has even written her own book.

I also met a couple of new friends/GF Bloggers.  I had the pleasure of hanging out with April Peveteaux, Gluten is my Bitch and Alison Needham, A Girl DeFloured. April wrote a book, entitled, just that, "Gluten is my Bitch" and is working on an upcoming book, "Bake Sales are my Bitch". Using a sense of humor and some profanity never hurts when dealing with a chronic lifelong autoimmune disease! I really enjoyed getting to know her and look forward to reading her book(s). Alison is a FABULOUS baker, building her fabulous business, Ginger & Fox Bake Shop. You can find out more about Alison, here.


#2 - More Gluten-Free Goodies









#1 - CDF Shirts

This conference and expo is to support CDF in their efforts to raise funds for research and advocacy efforts. There are so many ways that you can donate or be a part of raising funds for the Celiac Disease Foundation. Purchasing these shirts is one, but there are many others ways to donate. Click here to find out more.



PHEW! There you have it! I told you it was long, but I had a lot to write about! O, I can't forget to mention CDF's 25th anniversary celebration, which took place Saturday evening. I did not attend, but I heard it was wonderful. Congratulations CDF on 25 years!! Here's to another 25! 

I also want to thank my family and friends for their support!! Thank you for donating to my GoFundMe, allowing this momma to be part of such a great weekend! Knowing you all are behind our family on this journey, means more than you know. And one day, Jack will understand all this and will no doubt, feel the same way I do.

Find out more about CDF and their mission at celiac.org

Tuesday, April 21, 2015

Coming Up! May 2nd & 3rd, 2015 - CDF Conference & Expo

The Celiac Disease Foundation (CDF) National Conference & Expo is less than a couple of weeks away and I'm looking forward to heading to the west coast to be part of this fabulous event!


Last year, I experienced my 1st CDF Conference & Expo and I obtained so much from this event, that I must return and be part of their 25th anniversary celebration.

This year, Dr. Joseph Murray, Dr. Sheila Crowe and Shelly Case RD will be among the line-up of speakers discussing "Going Gluten-Free", "A Balancing Act: Women's Health & Celiac Disease", "Expert Nutrition for Your Gluten-Free Family" and more!

THE CONFERENCE & EXPO TICKET INCLUDE:                         

  • May 2nd and 3rd All Day EXPO Hall Access with Private Viewing on May 2nd from 10 to 11am
  • All Education Sessions
  • Opportunity for One-on-One Dietetic or Mental Health Consultation (First Come, First Served)*
  • Gluten-Free Breakfast Buffet Sponsored by Jones Dairy Farm and Pamela’s Products
  • Swag Bag Filled to the Brim with Gluten-Free Goodies
GET YOUR TICKET:  HERE 
(you can purchase an EXPO ONLY ticket here as well) 

On Saturday evening, the Celiac Disease Foundation will be having a 25th Anniversary Gala! CDF has been the leading voluntary health organization for the advancement of celiac disease advocacy, education and research. 


The Gala enhances awareness of Celiac Disease Foundation’s mission and secures funding essential to supporting the breadth of programming for the public, patients, healthcare professionals and the food industries, that distinguishes CDF as the nation’s voice for celiac disease.

This dressy evening of comedy and magic includes a cocktail reception, live auction, an elegant dinner, entertainment, and the presentation of the Volunteer of the Year Award.

GET YOUR GALA TICKET:  HERE

This event is unlike any other gluten-free conference or expo as it's focus is to raise awareness of celiac disease, educate and provide support to advance research of a disease that currently has no cure.

Thank you Celiac Disease Foundation for all that you do! I look forward to showing my support and being a part of a great weekend.

I'll see you May 2nd & May 3rd at the Pasadena Convention Center!