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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
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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