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spokethewind

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spokethewind Newbie

Hello everyone. I'm new here and I'm honestly a bit shocked that I may have this disease. I'm 1/2 Irish and live in the USA, and just started having symptoms in July. Yesterday was my first and hopefully only till I'm 50 colonoscopy, and my doctor took a biopsy of my small intestines and said it looks like I have celiac disease.

I'm really scared. My cafeteria at college is all about bread and cereal, not only that, but I LOVE bread. I read I can make my own bread but does it taste different? And eating out, are there any national chains that anyone knows of that have gluten-free bread?

And my main question, is this a hard disease to live with? :(


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KaitiUSA Enthusiast
I'm really scared. My cafeteria at college is all about bread and cereal, not only that, but I LOVE bread. I read I can make my own bread but does it taste different? And eating out, are there any national chains that anyone knows of that have gluten-free bread?

And my main question, is this a hard disease to live with? :(

<{POST_SNAPBACK}>

It's not hard to live with when you get used to it. It was overwhelming at first and you need to learn alot because products like makeups, shampoos, lotions, soaps,medications and that kind of stuff needs to be changed in addition to food.

Feel free to contact me and I can give you a few lists that would be helpful. My email is in my signature.

Also, the bread does taste a little different but there is alot of good bread you can get.

My favorite 3 are listed below

1.Kinnikinnick donuts and breads

2.Cybros Rice Rolls

3. Foods By George cinnamon english muffins

nettiebeads Apprentice
Hello everyone. I'm new here and I'm honestly a bit shocked that I may have this disease. I'm 1/2 Irish and live in the USA, and just started having symptoms in July. Yesterday was my first and hopefully only till I'm 50 colonoscopy, and my doctor took a biopsy of my small intestines and said it looks like I have celiac disease.

I'm really scared. My cafeteria at college is all about bread and cereal, not only that, but I LOVE bread. I read I can make my own bread but does it taste different? And eating out, are there any national chains that anyone knows of that have gluten-free bread?

And my main question, is this a hard disease to live with? :(

<{POST_SNAPBACK}>

Hi and welcome to the forum. celiac disease is livable - one member wrote about her 80+ female relative who was dx 50 years ago! It takes some getting used to, but check out the threads related to products and restaurants and such. I used to be a major bread eater (warm biscuits dripping with butter and jam mmmm....) and loved to bake cookies and pies before I developed celiac disease nine years ago. You do get used to the dietary change after awhile. For me, bread is now a treat - at over $5 a loaf, I make it last. It is a major adjustment, I'll admit, especially at your age with socializing and such. I hope you weren't much of a beer drinker, because that's off limits too. But for me, I consider the things I gave up as a small inconvenience to feeling better, being more active and the big improvement in my quality of life. After awhile it will be second nature. Come here anytime to ask questions, no matter how silly or trivial you may think they are. There are lots of us and have had so many different experiences and everyone is very helpful and understanding (we have to be, most of the regular population isn't). :)

Guest BellyTimber

Bake your own in tins and a machine.

Dripping with butter & jam ...

:P:P:P:P:P

And your sense of destiny and self worth ...

B);):unsure::rolleyes::o<_<:huh:

tarnalberry Community Regular
Hello everyone. I'm new here and I'm honestly a bit shocked that I may have this disease. I'm 1/2 Irish and live in the USA, and just started having symptoms in July. Yesterday was my first and hopefully only till I'm 50 colonoscopy, and my doctor took a biopsy of my small intestines and said it looks like I have celiac disease.

I'm really scared. My cafeteria at college is all about bread and cereal, not only that, but I LOVE bread. I read I can make my own bread but does it taste different? And eating out, are there any national chains that anyone knows of that have gluten-free bread?

And my main question, is this a hard disease to live with? :(

<{POST_SNAPBACK}>

It's hard to adapt to, but once you learn it, it doesn't have to be hard to live with. A lot of "how hard it is" depends on your attitude towards food, your restriction with food, people (both rude and ignorant). If you don't have a kitchen (or at least *something* to cook on/with, it will be harder, but there are ways around that too.

I prefer to maintain the gluten-free diet by sticking with unprocessed foods that are naturally gluten-free. It means I cook, but it doesn't mean I spend two hours in the kitchen every day! Others make heavier use of specialty products (particularly bread, which I used to love, but don't much have any of these days) and that works for them. Keep reading this site - you'll find a lot of useful information and helpful people to answer your questions.

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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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