Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Word Must Be Getting Out


par18

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    2. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    3. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    4. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    5. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,831
    • Most Online (within 30 mins)
      7,748

    ATownCeliac
    Newest Member
    ATownCeliac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.