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WinterSong

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WinterSong Community Regular

I wanted to say thank you to everyone on this forum. 

 

I've been reflecting a lot on where I was 2 1/2 years ago. I was the first of my friends to be diagnosed (since then, several of my friends/family have gone gluten-free), and during a very difficult and emotional time in my life it was a godsend to know that I wasn't alone. I had friends with funny screen names who would answer my questions, calm my anxiety, or share in my frustration.  

 

I see posts from people who are struggling or are newly diagnosed, and I see people reply who have been on this board consistently for years. The unwavering support that we have as a community is an incredible thing. We are impacting each other's lives in a truly meaningful way.

 

To those on this board who are new and feel like you are alone or aren't understood by your friends/family - it does get better. You are not alone. We are here for you.

 

I am proud to be a Celiac. I am proud to be taking charge of my health. I am proud to be a part of this wonderful, supportive community. We are awesome.  B)


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notme Experienced

me too!  i would have never been able to navigate these strange waters without the help of the many kind people on this forum :)  everybody starts at the beginning!!  i'm glad you are feeling better!  (i am too!)  it truly is a huge resource of interactive experience/advice - hopefully urban myth dispeller - from people who have 'been there, done that, got the t-shirt' lolz ^_^

GF Lover Rising Star

This Forum is also what got me through the gluten-free Transition and listened to me vent when I needed to.  IrishHeart personally got me through dehydration issues and helped me cope with wicked migraines and let me cry on her shoulder.  I have made many friends here and hope to pay forward what I have learned.

 

Colleen

mbrookes Community Regular

I can double up on the previous comments. There is no support group in my area, so I have turned here repeatedly, always with good results.

When I was diagnosed 6 years ago the hospital dietician said " I don't know much about this. Get on the internet". So I did. Six years later I am almost an expert in all things gluten free. Thanks, all you folks who have helped me out. I will continue to help anyone I can.

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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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