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dannynyc22

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dannynyc22 Newbie

whats up everyone,

My name is Danny from Fort Lauderdale, Fl. just got DX with celiac approx. 2 months ago. After my DX, i started shopping at a place called Whole Foods, which is nothing but organic foods and some gluten free items. As far as i know, i've been strict with my diet but it seems like i still have minor symptoms. i know i should be asking my doctor but sometimes is better asking someone with the same issue. Any advice would be greatly appreciated.

By the way, is there anyone that knows of any celiac groups/ meetings in south florida that i could attend to???

Sincerely,

Danny


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angel42 Enthusiast

Hi!

Welcome to the forum! I love whole foods. I am there almost every day. I would be careful about some of their prepared food. I have gotten sick on more than one occasion from the prepared foods. One time they swore up and down that their eggplant did not have bread crumbs and after three people went to find out and they had already packaged my food they came back and told me that they had mixed up the signs and the eggplant did have breadcrumbs. They gave me a different eggplant dish which they swore up and down was fine and I still got sick. Most of their stuff is fine but don't count on the staff for help.

Lisa Mentor

Danny, welcome.

You need to remember that it took some time to do some damage to your intestines and like-wise, it will take some time to heal. You may continue to have symptoms because the gluten free diet is not an immediate fix.

Make sure that you check you toiletries, shampoos, lotions, lip balm or ANYTHING that can get into your mouth. Gluten can hide everywhere.

I would recommend that you be diary light, if not off all dairy in the beginning. If you have villi damage dairy can cause the same symptoms as gluten, without the intestinal damage.

I have found that the best source of gluten free and related issues answers are here on this site. This is where the experts are. Always feel free to ask away.

dannynyc22 Newbie

Ok cool. It is nice to know all this. My doctor only told me stay off bread and pasta, but i come to find out theres alot more to that.

I appreciate all the information given to me and will make sure to keep that in mind.

Thanks a million

Danny

PS: If feels very nice to know that im not alone, and that theres people willing to give out a hand.

Guest lorlyn

Hey Danny just wanted to hi and welcome :rolleyes: our doc told us to read on this site because he could not tell us how to live a gluten free diet. If you have any questions this is the place for answers. I have learned so much here. Whole Foods is a good place to get special gluten-free food that you cant find at other stores. Just make sure to read labels always because companies can change at any time. Good luck and let us know if you need any help.

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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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