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Word Must Be Getting Out


par18

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par18 Apprentice

In the past 48 hours I have met two total strangers both of whom have gone gluten free without any diagnosis from the medical profession. It was my understanding both did so after doing research on the internet concerning their gastro issues. To me this is very encouraging as more and more people are finding their way to this possible solution on their own.

One person has been on the diet for over a year and the other is just starting. Neither seemed overly concerned about the prospect of having to do this the rest of their life. Both were open about discussing their symptoms (just like most of us) and I did not sense any reservations on their part. I told them how impressed I was with their effort and wished both of them luck. Both encounters were in grocery stores. One worked as a cashier and the other was shopping in the gluten free section. Both were young women in their teens or early twenties. I sensed a lot of maturity when speaking to each of them. The word is getting around.

Tom


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Lisa Mentor

Tom:

In the two years since I was diagnoses and learned what in the world Celiac Disease, I have witnessed tremendous awareness.

You are familiar with my hometown. We had no gluten free products. This week the Food Lion (one of two grocery stores) put in a huge health food section and more gluten free products that I only have heard about from this site. Talk about a kid in a candy store.

It's also good product marketing to the "Boomer" generation.

bluejeangirl Contributor

I've been in the gluten free aisle in the store and I'm always amazed how friendly people are who are looking at the same time. I've been asked several times if I'm gluten free and how long etc., etc. People are so willing to share tips and I've been invited to come to meetings. The other day I was in Barnes and Noble looking at G.F. cook books and another gal comes over right by me and I noticed she pulls a G.F. cookbook down. It didn't take long and we were sharing stories of how long we had to suffer before we got the right diagnosis.

I'm so happy there is the awareness out there now. It's not such a loner disease anymore.

Gail

gfpaperdoll Rookie

I think there are a lot of people out there that have gone gluten-free without a diagnosis. I know a lady from my office building that she & her daughter & a friend are all gluten-free & DF & they have no intention of getting a diagnosis, & they are very strict on the diet & do not cheat. They all had a lof of gastro problems and were constantly at the doctors office. No more, they laugh about not making appointments and spending all that money at the doctors office. they had everyone in their apartment complex researching on the internet for them - in addition to talking to me, & they said that all the people in the complex were amazed with what they learned...

With all the publicity that gluten-free is getting now, I think that there are a lot of people that have looked at their health & the health of their families and figurered it out & just threw out the flour etc. There are a lot of people out there that are now used to getting their info on the internet & they are checking it out.

I would also like to say that I have been amazed at the diagnosed celiac people that I know that do not belong to a support group and do not post to the internet etc. I live in a poor part of Houston & the local grocery has a nice gluten-free section and it is sometimes sold out of the best things, people are buying this stuff. & one of the main whole Foods here in town, sometimes you can go thru there & say yes, someone from out of town has been in here & claned out all the Lundberg Rice Chips, the brownie mixes etc etc. Sometimes I am guilty of buying the last three boxes of something myself, maybe picking up a few things to gift to my friends, etc.

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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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