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

May Is Celiac Awareness Month


Lisa

Recommended Posts

Lisa Mentor

Take a minute and let Congress know you would like their attention:

Open Original Shared Link[capwiz:queue_id]


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



Celiac.com Sponsor (A8-M):



MaryJones2 Enthusiast

Thanks Lisa!

brendygirl Community Regular

Thanks so much for posting! I sent the link to my whole email contact list. :)

Lisa16 Collaborator

Thanks Lisa!

I editeed the text and attempted to send he form. Sadly my representative does not accept emails.

Sigh.

But this is a fabulous idea.

Lisa

jerseyangel Proficient

Done. Thanks Lisa :)

MaryJones2 Enthusiast

Here's the text of the proposed resolution: Open Original Shared Link

Lisa Mentor

Please take a minute to fill this out and send it to your Representative. Thanks to those who have.


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



Celiac.com Sponsor (A8-M):



  • 3 weeks later...
Lov2BeMe Rookie

This is great i sent this out to everyone I know!~

Spread the word.. knowlege is contagious!

LadyBugLuv Rookie
Take a minute and let Congress know you would like their attention:

Open Original Shared Link[capwiz:queue_id]

thanks! sent mine in :)

wonder-woman143 Newbie

That was so easy! Thanks Lisa!

wonder-woman143 Newbie

I just recieved this email from my Congressman:

[Thank you for writing in support of the goals of National Celiac Awareness Month. This is an important issue, and I appreciate your input.

Indeed, celiac disease is significantly under diagnosed in this country, though officially nearly 1% of the population suffers from this disease. As noted in your email, the disease is caused by a reaction to gluten proteins that are often found in wheat products. The only effective treatment for celiac disease is a diet completely free of gluten and other gluten products. I agree with you that the public should be educated as to the causes and effects of this disease. I look forward to discussing this resolution with my colleagues, and will keep your thoughts in mind when it comes to a vote.

Please feel free to contact me in the future with your thoughts. It is always good to hear from you.]

Does anyone have a good response to this letter that I could send as a reply, now that I have my congressman's attention? I'm new to this since my husband and 3 (out of 4) children have just been diagnosed this month. Thank you for your help.

WW

digmom1014 Enthusiast

Done! Thanks Lisa!

mushroom Proficient

I just received a reply from my congressman too. He included the information that "While celiac disease is the most common genetic disorder in the world, more research is needed to fully understand and properly treat celiac disease."

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,914
    • Most Online (within 30 mins)
      7,748

    ChrisMary
    Newest Member
    ChrisMary
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.