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

Joining Your Group...


africanqueen99

Recommended Posts

africanqueen99 Contributor

Hello all.  I'm a regular old midwestern mom that is joining in for help and support.  Last week I found out why my 1.5 year old dropped from 25% weight to 3% weight at 12 months...and hasn't really grown since.  The Ped ran bloodwork *again* and she was 100+ for her celiac test.  I am taking her to the dietician tomorrow and my husband and I take her to the GI on Monday.  Due to her age it sounds as if they won't do a biopsy, but I'll find out next week.

 

There has been so much to read and digest in the last week - and I can only imagine so much more to learn!

 

First, I'm so, so grateful to have a diagnosis.  How cool that my baby girl is finally going to grow (!!).

 

Second, I'm mentally putting together a list of working through this with my family (we also have a 7 y/o girl and 3.5 y/o boy).  After meeting with the dietician and GI we're going 100% on the diet.  The whole house is going to be gluten-free.  I think I know what to take out, what to buy new, how to keep the house gluten-free, but there are a few other things that I'm already mulling over:

1. Do I keep my car (which also carries other peoples' kids regularly) gluten-free?

2. Do I make sure that nobody ever brings food into our house?  We are the "entertaining" house and do a ton of pot-lucks, shared snacks, etc.  Providing all the food/drink for so many all the time sounds remarkably scary!

3. Do you have your older kids wash hands upon entering the house every single time?

4. She is still nursing so I'll obviously be on the diet, too, but will things like my beauty products harm her via my milk?  If so, suggestions on products to use would be highly appreciated.

 

Also:

5. What do you wish you would have known then when dealing with your little kid?

6. How did you bill this to your older kids so they don't feel "slighted" by the changes?

7. Did you also get tested, along with the other members of the family?

8. Something hit me earlier today - it would be so easy to fall into this weird disordered eating issue.  How to avoid this?

 

So many questions. :)  Thanks for any help you can give.  Just reading this particular forum has been so incredibly helpful to get my thoughts focused.

 

Angela


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Because Celiac disease is genetic and you must be eating gluten to get a positive result - get all the kids and you and the dad tested before eliminating gluten.  Good to know right now how many of you actually have Celiac at this point. 

africanqueen99 Contributor

Yes, thank you for that.  We haven't altered our diets yet - waiting to see the doctors first to see about additional testing.

cyclinglady Grand Master

Hi, I have celiac disease and my husband has been gluten free for 12 years (no formal diagnosis).  

 

Here's a few answers to some of your questions.  I'm sure others will follow!

 

  • Gluten free cars
  • Daughter (not gluten free) must wash her hands when entering the house (gets rid of the germs too!)
  • All playdate snacks are gluten free (homemade popcorn (cheap), fruit, potato/corn chips, ice cream, yogurt, gluten-free cookies (they don't even notice)
  • I'm the cook, so most family parties have always been  at our house.  I made most everything but have them bring drinks, potato and corn chips, gluten-free salsa, uncut fruit like grapes or I cut up when they arrive, salad fixings that I throw together, paper goods.  They  admit that they like lettuce wrapped burgers!

 

I don't think my daughter has ever felt slighted by our going gluten free.  I pack up her lunch with pre-packaged gluten foods (e.g. goldfish, cookies, frozen P & B sandwiches).  She's learned to eat a BLT on gluten-free bread and spaghetti on gluten-free pasta and as long as I bake homemade gluten-free baked goods, she's happy.   Our dinners have always been gluten-free her entire life!  

 

She does eat Cheerios but she uses her own bowl and I pour the cereal and be sure to clean the counter (we use a separate area).  She like rice porridge and eats Rice or Corn Chex.  My friends bake gluten goodies for her and I freeze them for her lunches.  

 

She goes out for meals with family and friends -- a nice time to bond. 

 

I would be more diligent about keeping gluten safely away from your baby.  They put everything in their mouths!  

 

Hope this helps!

africanqueen99 Contributor

Thanks for your reply!  I'm going to start keeping lists of appropriate snacks - love your suggestions!

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - julie falco replied to elisejunker44's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Schar's products contain wheat!

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

      Second chance

    3. - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

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

      Second chance

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,604
    • Most Online (within 30 mins)
      7,748

    JV2026
    Newest Member
    JV2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • julie falco
      thank you that is good to know that it is safe for celiac people
    • Jmartes71
      Current careteam is still up in the air about my celiac thanks to me googling "celiac specialist" what popped  up was once known as a good name hospital back in the days. I went in for answers for my declining health, it was the autoimmune part that did me in, being a former bus driver.I read that in my medical records so easily downplayed, i refused the gluten challenge! Why the hell would I eat Gluten when im Celiac coming to them for answers when my body is falling apart? Glutenfree since 1994. They did unnecessary colonoscopy KNOWING im glutenfree. A celiac specialist would know that would be pointless to do if not eating gluten and it was done!Im so angery with that hospital for not explaining celiac disease and withholding information, Downplaying my ailments , mental distress,  causing more health issues, ect. All this could have been avoided If medical records were sent, when asked, explained and done properly. Im so angery.I do have the celiac dietitian on here in June and linked her up to my current health care yesterday, fingers crossed hopefully with that, the understanding of celiac is explained it's not just a food allergy will be understood. 
    • Scott Adams
    • Scott Adams
      Thank you for sharing your experience, Florence. It’s important to clarify, though, that proteins like zein in corn, panicin in millet, and kafirin in sorghum are not considered gluten and have not been shown to trigger the same autoimmune intestinal damage seen in celiac disease. Some people with celiac disease do report symptoms with certain gluten-free grains, oats, or other foods, but that reflects individual intolerance or sensitivity—not a proven “gluten-mimic” effect that damages the small intestine. Certified gluten-free oats are considered safe for most people with celiac disease, though a small subset may react to avenin. If specific foods consistently cause symptoms for you, it makes sense to avoid them personally, but it’s helpful for readers to know that these foods are still medically classified as gluten-free and generally safe for the broader celiac community.
    • Scott Adams
      It’s true that awareness of celiac disease can vary among physicians, particularly outside of gastroenterology, and many patients end up educating their own providers. Reaching out to someone you trusted for 25 years makes sense if you felt heard and supported. That said, celiac disease management often benefits from a team approach, including a knowledgeable primary care provider and, when needed, a gastroenterologist or dietitian familiar with gluten-related disorders. Advocating for yourself is not unreasonable—it’s part of managing a chronic condition. If your current provider relationship isn’t working, it’s appropriate to seek care where you feel respected and properly supported.
×
×
  • 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.