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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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    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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