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africanqueen99

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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


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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!

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    • trents
      But you haven't yet answered my question about how sensitive to you are to minor amounts of gluten.
    • Healthierbody2026
      @trents my apologies my doctor has been saying that I’m pre-diabetic for years now sorry I didn’t include that information 
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      @trents first response: can you direct me to that particular section of this site for NCGS or and are there any groups I can join for people with NCGS? second response: I can’t really remember due to it was some or a few years back but I believe she did blood tests or work on me or I think she did a glucose test on me.
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      There is not a distinct section in this particular online resource and community devoted to those with NCGS. And I cannot say with any certainty whether or not such a thing exists elsewhere online. But your question makes me think celiac.com might entertain the idea of starting a forum within our community for that purpose. I should explain that celiac.com is divided into a number of separate forums, each devoted to a different topic or concern within the gluten intolerant/gluten sensitive population. Having said that, the main is on those with celiac disease (or their support systems) rather than those with NCGS because it has more serious long-term health implications. I see. Can you elaborate on how you were tested to arrive at this diagnosis?
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