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Need Dedicated Gluten Free Facility


ChristyL

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ChristyL Rookie

My daughter, Emma, was diagnosed at 18 months. She is now 20 months. Through trial and error (lots of error) I have come to the realization that it is not enough for a product to be labeled Gluten Free. She has a reaction unless the food is produced in a dedicated gluten free facility. Our nutritionist told us we did not have to worry about a dedicated facility but I have heard from other people with Celiacs that they have found this to be necessary as well. Has anyone else experienced this? She lost a lot of weight before being diagnosed and we are still trying to plump her up. She wants to snack all the time. Any snack suggestions (keeping in mind the dedicated facility issue)? I give her fruit, veggies and cheese but she's really picky. She will only eat strawberries and only cheese that is shredded which is tough to take places.


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dilettantesteph Collaborator

I also needed a dedicated facility, and so did my son. As time progressed we got more sensitive and now we can't eat very many processed foods at all. Do you have a gluten free household? If she needs a dedicated facility, she may need that too. Have you tried apple slices for a snack? Clementine oranges?

kareng Grand Master

When M was little, he only like his cheese and carrots shredded. Just put them in a baggie. A little messy to eat. Will need a place to sit the shredded stuf down in a little bowl. Maybe sit on a bench with you or in stroller & you hold the bowl?

Will she eat cold cuts? She could hold those. They are kinda salty so she may like that. Have you tried Chex? The gluten-free ones are made at a different place than the non gluten-free ones.

When my boys were that age, they would eat it if it was on Uncle's plate or another teen boy or man that isn't Dad. Maybe a little bit older girl would sit with her and eat sliced apples or gluten-free crackers. My really picky eater at home, ate all kinds of things at Daycare cause the older boy or the dad were eating them. After a few times eating it at day care, I would give it to him at home.

You may be dealing with a texture issue, too. My youngest wouldn't eat mushy. No baby food for him! She may prefer mushy to crunchy. I found most things can be cut up tiny for no teeth.

Good luck! I have heard that you have to put something on the plate 3 times before some kids will consider it.

T.H. Community Regular

Both my daughter and I have reached the point where we have to have a dedicated facility, too. Essentially, it seems that some of us react to lower ppm of gluten than others, and a gluten-free facility simply makes it more likely that the food has low enough gluten. My family just finished figuring this all out over the last few months, so I'll pass on the one thing that we found out that might be of use: not all gluten-free facilities are created equal.

Some test every batch of product coming out of the facility and every ingredient coming into the facility. Some only test one or the other. Some test only every few batches.

And what level of gluten they test for differs, too. Usually, in the USA, they test for the gluten level to be either below 20ppm, 10ppm or 5ppm.

In all honesty, if we hadn't called the companies, I don't believe we would have figured out just how sensitive my daughter was, but when she's eating a food that was tested for a certain level of gluten and gets sick - and that's ALL she ate - the picture becomes a lot clearer. It's much easier when you can say: my daughter needs to have food that is below this many ppm of gluten.

Re: snacks: have you tried to make her any crackers? If you get a gluten-free flour, an oil, water, and salt, you can roll them really thin, right on the cookie pan, and bake it into a cracker. Amaranth flour has worked well for this with us. Teff works well too - tastes good with maple or peanutbutter added, too - but it's a bit more crumbly. You could add whatever you liked to it.

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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.
    • trents
      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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