Jump to content
  • 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):

Celiac Not So Rare Afterall


Travis-Hiland

Recommended Posts

Travis-Hiland Rookie

I would like to re-affirm any motion carried forward on this forum that Celiac is not so rare afterall.

I believe most Celiacs can attest to the lack of understanding and underrecognition of Celiac Sprue in the U.S. medical community. My wife was finally, officially diagnosed nine months ago, after the 12 years of symptoms, the severest of which manifesting during the final 6 years before diagnosis.

Research shows that Celiac is probably the most underdiagnosed condition in the U.S and affects more people than Crohn's disease, cystic fibrosis, multiple sclerosis, and Parkinson's disease combined. Yet 97 percent of the people with celiac go undiagnosed. Incidently, outside the U.S., Celiac disease is recognized as one of the most common genetic conditions in the world!

In 2004 the National Institute of Health Consensus Conference on Celiac Disease validated a study conducted by the University of Maryland's Center for Celiac Research (CFCR). They concluded that 1 out of 133 people in the U.S. (3,000,000 people) are at risk for celiac disease. Also very revealing, is the associative risk amongst immediate family members.

Celiac disease is known to occur in 5-15 % of children and siblings of those with the disease. The results of one study indicate that one out of 22 first-degree relatives of a celiac have the disease as well. While other studies show that immediate family members have up to 30% chance of carrying the genetic markers for celiac. In 70% of identical twins, both twins have the disease. It is recommended therefore that both first and second degree relatives of a celiac be tested as well. And finally, since Celiac Disease is an autoimmune disease, it is suggested that people living with other autoimmune disorders, like Diabetes, Addison's disease, Rheumatoid arthritis, Lupus, MS, Grave's disease, and Hashimoto's thyroiditis, should be tested as well.

It behooves anyone at all affected by Celiac, including family members, to become overnight spokespeople for the disorder. The medical community at large in this country are grossly misinformed and underinformed about the symptoms, the risk factors, the genetic predispositions, and ultimately how easy it is look for markers in a simple blood test. Learn as much as you can about the disease here: www.celiac.org and www.celiac.com, and share your story with as many as will listen. You may be able to inspire professionals and friends alike, and shorten someone's time to diagnosis and healing, which is currently averaging about 11 years! Imagine what is must be like to have to wait 11 years before you hear that you are not crazy afterall, you really were sick, but no one understood. For my wife, it was 12 years, and symptoms had to escalate to life threatening levels before diagnosis was ultimately reached.

Travis Hiland -www.travishiland.com


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



Celiac.com Sponsor (A8-M):



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. - Stegosaurus replied to Mrs. Cedrone's topic in Related Issues & Disorders
      8

      Canker sores

    2. - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Recipes & Cooking Tips
      3

      Pear Bread

    3. - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Recipes & Cooking Tips
      3

      Sorghum, Kale and Roasted Cherry Tomato Salad

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

    • Total Members
      134,004
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Stegosaurus
      i used to get cold sores frequently before I went gluten free.  Then I only got them when stressed.  Then I cured my gut dysbiosis, and haven't had one in 20 years.
    • Aretaeus Cappadocia
      To me, this bread is pretty special. The first time I tried adapting it I used a commercial gluten-free flour blend and it was good, but when I experimented using individual flours I tried the almond flour and it took it from good to special. I add walnuts or pecans to a lot of my desert bread recipes but I haven't tried nuts with this one. I would guess that adding either of them would result in the whole being less than the sum of the parts because the almond and other nut flavors would be competing. I wouldn't want to add almonds because of the texture. But you never know until you try. Have not tried cinnamon in this recipe. I imagine it would work. As I modified this recipe from the original, I reduced the sugar. The posted recipe is what I currently use. You are right that the pears bring a little sweetness to it.
    • Aretaeus Cappadocia
      It's kind of funny that before my celiac diagnosis I did a lot more "functional eating" where I just needed a meal and wasn't so worried about how interesting/delicious it was, just needed to eat something. After my diagnosis I've become a dedicated cook and I am very tuned into flavor and novelty. In answer to your question, I find the recipe very forgiving for trying add-ins. I've supplemented the greens with green onions, bell pepper (any color), celery leaves and stalks, and fresh parsley. Sometimes I throw in pepitas (pumpkin seeds), craisins, walnuts and/or sunflower seeds. One thing I tried that didn't really work was currants. I think that maybe it's because they are too small and too sweet. I haven't experimented with cheeses beyond the 2 in the recipe. I would guess that grated hard cheeses would work, medium hard cheeses (like swiss or cheddar) might work, and soft cheeses would not.
    • Harris
      That actually sounds really nice. Pear bread feels like one of those things that would be soft and a little sweet without being too heavy. I like the idea of using fruit like that instead of just relying on sugar. It probably makes it feel more fresh and homemade. Have you tried adding anything like cinnamon or nuts to it, or do you keep it simple?
    • Harris
      That actually sounds really good, I wouldn’t have thought to mix sorghum with kale but it makes sense. The roasted cherry tomatoes probably bring a nice bit of sweetness to balance everything out. I’ve been trying to find more simple gluten-free meals that don’t feel boring, and this feels like something you could make ahead and just keep eating through the week. Did you add anything else to it, like nuts or cheese, or keep it pretty simple?
×
×
  • Create New...