Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Rate this topic

Recommended Posts

Hi!

I have been eating, sleeping, and dreaming about the Celiac diagnosis since we found out last week.

My 7-year-old is newly diagnosed by blood tests and endoscopy. He was not failure to thrive or any obvious symptoms as an infant or toddler. He began having left upper quadrant pain last June and the Pediatrician treated him with Prevacid for 3 months. Why does that work for Celics? After weaning him off the Prevacid, the pain continued and we were referred to Peds GI. The endoscopy and blood tests were enough evidence to make the solid Celiac diagnosis. We started the diet this weekend. I am a Registered Nurse (not in Pediatrics), and I remember from my Peds rotations that when you present diet changes, they should always be presented to the child as a "positive change." Is this how all of you did it? My son seems fine with the changes right now. I try not to show him that I am truly overwhelmed.

I also need guidance on whether to test my 4-year-old, who is completely asymptomatic and growing well. The Peds Gastroenterologist said "it is controversial in my field." She did not really expand more than that. What should we do? We will soon be seeing the nutritionist but I could use some tips on shopping and cooking as well. This is a wonderful site for newly diagnosed individuals. Sorry for the long post.

Thanks

Share this post


Link to post
Share on other sites

Hi Motherof2boys. You have found a wonderful resource with this website.

Here is a list of companies that do not hide the gluten in their labels . . . so if you don't see wheat, rye, barley, or oats listed, you do not have to worry about that generic term "natural flavoring"

http://www.glutenfreeindy.com/foodlists/in...donothidegluten

Our pedGI recommended all siblings be (blood) tested even if there are no symptoms. It is something that can start at any time so you may just want to screen every two or three years or if GI symptoms start up.

I always told (and still do) tell my daughter that she can have the same things as the other kids, it just has to be made special. She can have chicken nuggets . . . just not McDonald's. She can have choc chip cookies . . . just not Chips Ahoy. So far, this has worked well for us. I know it's hard now, but it does get easier and you do get yourself into a routine. It's really not that hard to convert your dinner recipes to gluten-free.

Some gluten-free kid favoUrites:

Tinkyada Pasta (&Cheese Packet out of Kraft Mac&Cheese is OK - pitch the noodles)

Bell&Evans chicken nuggets/strips (make sure box says gluten-free as they have other varieties) (I make my own and freeze, also)

Van's frozen waffles

Pamela's Pancake (&Baking) Mix

Lays Stax

Glutino Pretzels

Trix, Dora Stars, Fruity Pebbles

Betty Crocker Potato Buds (instant Mash Potatos - I'm not a big fan but they are fast)

Orieda french fries - shoestring & crinkle cut (there are more but these are the ones we use)

Great Value Brand AuGratin Potatos

Oscar Mayer lunch meats and hot dogss (read the label, they will list gluten)

Kraft Cheese

Jif Peanut Butter

Rice Cakes

Fresh fruits & veggies (that is if you could get him to eat them before :P )

If your child has any favoUrites that you are having trouble replacing, let us know and we'll respond with what worked best for us.

I also recommend the book Kids with Celiac Disease by Danna Korn.

Share this post


Link to post
Share on other sites

The leading Celiac experts recommend that ALL first degree relatives are screened via bloodwork, regardless of symptoms or no symptoms.

http://www.celiacdiseasecenter.columbia.ed...nts/A02-FAQ.htm

Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%).

The reasons to diagnose family members prior to the development of symptoms include the prevention autoimmune diseases and malignancy.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,812
    • Most Online
      4,125

    Newest Member
    T Jenry
    Joined
  • Forum Statistics

    • Total Topics
      112,069
    • Total Posts
      956,727
  • Who's Online (See full list)

  • Forum Discussions

    Been doing it for a week now, I am trying doctors best and got a deal on some from Vitacost both in capsule form to avoid the crap they put in the other forms I found it available. I am actually using both one in the morning one in the afternoon. Might not work for everyone but I am seeing why many bodybuilders swear by it in the gym. I just figured if it might help people that get muscle fatigue easily with daily life. 
    For what it's worth, I've noticed that if it's just iodine I will not get any other symptoms. In addition to the rash, I typically get GI symptoms, fatigue, and sometimes joint swelling when I ingest gluten. I don't typically eat seafood or stuff with lots of iodized salt, but sometimes I do on special occasions knowing that there will be some relatively minor consequences. Typically this is because I am traveling - canned tuna, salty snacks, jerky etc. are often the only nutritionally bala
While a Celiac reaction requires actual consumption of gluten, I take no risks.  Sunscreen might melt into my mouth a long bike trip or I could bite a nail.   I use CeraVe lotion for my face.  In winter, I use their heavier cream.  I also use the Equate “CeraVe” version by Walmart which is made in Canada.  I use a lot of sunscreen.  I buy Equate which does not contain gluten, is recommended by Consumer reports and is inexpensive.  Do not use CeraVe sunscreen.  For some reason they changed t
  • Blog Entries

  • ×
    ×
    • Create New...