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kevbogreen

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kevbogreen Newbie

Hi...my name is Kevin im 16 and i live in Arkansas...i just found out that i have celiac diease...and i was j/w if it was hard to cope with or easy to mannage? I would apprecate ur responses...

Kevin


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skoki-mom Explorer

Hi Kevin,

I'm new to all this as well. Just wanted to say welcome and I'm sure you'll find some good information and support here. It's been pretty overwhelming the last week for me, but I'm doing ok and finding there are lots of gluten-free products to try, and of course the naturally gluten-free food as well! So far I'm not starving!

tarnalberry Community Regular
Hi...my name is Kevin im 16 and i live in Arkansas...i just found out that i have celiac diease...and i was j/w if it was hard to cope with or easy to mannage? I would apprecate ur responses...

Kevin

<{POST_SNAPBACK}>

Welcome to the board. I'm sorry you need to be here, but glad you found us.

As for how hard celiac disease is to cope with, it pretty much depends on how well you cope with the diet. And that varies widely. If it means that you have to greatly change your eating habits, and you also are very uncomfortable being "different" from the crowd, it'll be harder than if neither of those is true. But it's a learning curve, and it'll take some time to learn and adjust to the diet.

Are your parents supportive of the diet and will be helping you keep the kitchen/food safe?

KaitiUSA Enthusiast

Welcome to the board.It is very easy to manage as long as you are 100% gluten free...if you stay gluten free you are good to go. You have to be extremely careful. It may seem a bit overwhelming at first because gluten is hidden under so much but then you'll see how much we can still have and good substitutes for the stuff we now can't have. If you need any info or someone to talk you can contact me anytime. I am 18 and I was diagnosed when I was 16 too.

It can be hard, especially at first, when people make comments about it...some people do not understand it.

kevbogreen Newbie

yea my parents have been supportive so far...but its only been about a week since i found out...so i dont know how far they will go...thanks for eveyones responses...

Kevin Green

Cindy Chabot Newbie

Hi Kevin

I have been recently diagnosed along with my 16 year old son. There are a lot of gluten-free choices available which help to make dealing with this disease easier. The hard part is going to restaurants or just out with people, you have to be careful not to be glutened. I have found this forum an excellent place to find out information. My son is finding the diet not to bad to deal with. I hope you find some gluten-free food that you like.

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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. 
    • trents
      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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