Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

"experts Needed"


taterbug

Recommended Posts

taterbug Newbie

WOW - never heard of celiac disease until 20 month old is failing to thrive (20 lbs and counting, backwards) and gluten seems to be final diagnosis (based on blood work and symptoms - endosocpy was inconclusive). Every web site I have been too about celiac has been loaded with valuable information for us. Now, calling all parents who have young children with celiac disease - what are your tips? Easy enough right?! I want to put 100% energy into her diet and getting her healthy. Already joined local support group and going to hear Danna Korn next month. I feel overwhelmed, same as you have felt I am sure. We are just happy to have a treatment plan after 2 months of testing everything from cystic fibrosis, renal tubular acidosis, abnormal kidney, metabolic issue, etc... Thanks! Your help and comments are greatly appreciated!


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



Celiac.com Sponsor (A8-M):



ashlee's mom Rookie

I am so glad you were able to find out what is wrong and now can eliminate gluten! It sounds like you are on the right track! If you are going to see Danna Korn, I assume you have already read her book! That helped me a lot. I also use the Incredible, Edible, Gluten free cookbook for kids a lot. The good news is that even though this is all overwhelming now, it will be second nature soon. The not so good news is that it will probably be frustrating until then!

Some questions so we can help you better...Will your whole family be gluten-free or just your daughter? We are mainly gluten-free, but we adapt things so that they are similar where necessary. Like if we are having spaghetti she has her own noodles. What kind of pots and pans do you have? How well does she eat? Do you need suggestions on trying to get her to eat more?

Anyway, good luck, and hang in there and know it will get easier! It was explained to me like learning to drive. It is overwhelming at first, but then it gets easier. But the minute you stop paying close attention, watch out!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,819
    • Most Online (within 30 mins)
      7,748

    Susan Goodman
    Newest Member
    Susan Goodman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AuntieAutoimmune
      Great tips, Deb. Thanks.  What a pity that they no longer mark items as gluten-free. And it is even more of a shame that you must bring protein bars instead of the crew helping you with your needs. Are you planning on sailing Royal again? 
    • Scott Adams
      I've not heard of any issues with Primal Kitchen, but it certainly would be worth not using the brand for a while to see if this helps. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      If you are super sensitive you may want to look for only Certified Gluten-Free Products, as @trents mentioned.
    • Scott Adams
      I'm not sure about low calorie, as puddings are typically a dessert, but we do have this category: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-pudding-recipes/ This one might work if you cut back on the sugar:    
    • DebJ14
      We are off next week on our 9th RCCL cruise since our diagnoses.  I send an email to special_needs@rccl.com before every cruise letting them know that I am both dairy and gluten free and my husband is gluten free.   Unfortunately, with the new menus they introduced in 2023, they removed the gluten-free designation from each item on the menu.  Instead of having a dedicated person take gluten-free orders, it now falls to your regular wait staff.  Some have been great and some not so good.  We had a great cruise in May and hit it off with our head waiter.  She went the extra mile and ordered gluten free desserts that were not on the menu.  My problem arises from other food allergies.  I am allergic to dairy, beef, and several types of fish.  On those days my husband is a happy camper with a steak or salmon, veggies and a baked potato.  I end up not getting enough protein, so I bring protein bars.  I also bring snacks for the room. As long as the food is commercially prepared and unopened, you can bring it. Often the only dessert choices that are gluten free contain dairy, so I am out of luck.  But, if you are just gluten free, they have plenty of choices.  See the head chef in the Windjammer buffet and he will give you a tour of the gluten-free choices.  They usually have 2 gluten free desserts out at lunch and they are labeled gluten free. We have found that it works best to have assigned dining rather than anytime.  That way the waiters learn from the get go what our needs are, and we don't have to explain ourselves every night.  We also get a private table for 2.  I frankly got sick and tired of tablemates telling me a little bit of gluten would not hurt me.
×
×
  • Create New...