Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Megan's First Birthday


TCA

Recommended Posts

TCA Contributor

Just wanted to let all of you know that my baby girl had a wonderful gluten free first birthday. Because of her heart surgeries, I made her a gluten free heart shaped cake with pink cream cheese icing. It was delish! She couldn't eat any because of her gagging issues, but she had fun playing in her cupcake. Thanks for all the support over the past few months. She's doing so much better now that we're gluten-free.

We went to a feeding clinic yesterday and her dietician's mother-in-law has celiac disease. It's so awesome to have someone who understands to help us at last! Just had to share my excitement!!! The new dietian has also found something called Compleat Pediatric, which is something we can give her by her feeding tube to increase her caloric intake and put some weight on her before surgery. I hope it works since all the formulas made her sooo sick. This is basically blenderized whole foods like beef and carrots, etc. The only thing she has tolerated so far is breast milk and my supply is falling off.

We also got a call from Vanderbilt today and the next sugery is scheduled for August 15. Please keep her in your prayers.

Gotta go get the little princess into her bed. She's snoozing in her swing at the moment after a long day of partying!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



plantime Contributor

Happy birthday to your little princess, I'm so glad her party was a success! Yes, I will keep her in my prayers. :D

MySuicidalTurtle Enthusiast

How nice for her to have a good birthday!

Canadian Karen Community Regular

I'm glad your sweet angel had a wonderful birthday!

August 15th, eh? That's my anniversary! And her and I also share the same birthday! I definitely feel a connection happening here! :P:D

Hugs.

Karen

jerseyangel Proficient

Glad to hear she had such a nice birthday! Hope the new food is successful. August 15--I will remember her in my prayers. :)

Jnkmnky Collaborator

Keeping your family in my prayers! :)

VydorScope Proficient
We also got a call from Vanderbilt today and the next sugery is scheduled for August 15. Please keep her in your prayers.

You got it! And dont forget to email me if we can help you out....


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rusla Enthusiast

So happy she had a great birthday and she will have many more to come. Ones where she will be able to eat her gluten-free cake.

schuyler Apprentice

Your little princess will definately be in my prayers.

Danielle

nikki-uk Enthusiast

Glad she had a good day.

Wishing you all the best for her surgery in the summer :)

Cheri A Contributor

Happy Birthday to your sweet girl!! Congrats on finding a dietician who can truly help you!

TCA Contributor

Thanks so much. You guys are so sweet. I'm so glad I have all of you to vent <_< and be happy with! :D

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,088
    • Most Online (within 30 mins)
      7,748

    Clare Durham
    Newest Member
    Clare Durham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.