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Gluten And Casein


KayJay

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KayJay Enthusiast

Hello I just got my results back and I am gluten and casein sensitive. I have been gluten-free but casein is new to me. I know it is milk protein but is that in all dairy foods? Like butter, cheese, sour cream things like that? And so if I find a gluten-free cookie that has butter in it would that be bad for me? In other words is it like gluten-free that when I go to the store I need to check all labels for casien or milk? Would hidden amounts hurt me? What if I didn't get symptoms would it hurt my intestines from healing? I am just curious I can't seem to find much info on this.

--I know I see a lot of people on here that are both gulten and casien sensitive how do you get calcium do I need to take supplements?

_I know this is a lot of questions but I am just so curious now. I took on the gluten-free challenge so now I am taking on the CF challenge.

thanks

Kayla


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wwebby Apprentice

I am also casein sensitive, but I haven't been compliant. I am getting tested again on the 29th.

You might want to search the internet for information on the gluten free casein free diet. There are actually alot of resources available because they've discovered that autistic kids do better on this diet. There is a huge network of parents who know all about what is both gluten and casein free. They sell books, etc. I don't have the link right now but you can search for it.

Good luck!

KayJay Enthusiast

thank you I have been searching the internet and I did find that a lot of autistic kids go on the Gluten-free Casein-free diet. I am learning more but still I need to learn more about it. I would apperciate any site that you could find. I think I need to get a Gluten-free Casein-free cookbook and see what I can come up with.

thank you for your information good luck in finding out what you can and can't eat.

thanks again

  • 4 years later...
eeyore Collaborator

Hi KayJay

I'm gluten and casein sensitive...yes, anything with milk products in it would probably not be good for you. It also depends on how sensitive you are to it. For instance, Lindt dark chocolate 'may contain traces of milk', but I still have it anyway. And the ingredient list doesn't always say specifically something that you know comes from milk (like some non-dairy creamers, that have sodium CASEINate in them, which is a milk derivative), so you have to watch out and if there's anything you're suspicious of, it would be best to look the company up and make sure it's casein-free.

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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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