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

It's Celiac!


Guest cd&dhspruehead

Recommended Posts

Guest cd&dhspruehead

Exsplaining celiac to others is like talking to a wall.If doctors don't get it ,why would the general public.Wheat is only one of the things we are allergic to.It comes in so many forms.''Wheat allergy''makes it all seem tame.No one can grow out fo Celiac.its there for life.Look at foodallergybuddy.com for example.Thay have down lodeable food allergy cards.Whats there to ceck off under the wheat calum.Every thing but barley,rye,oats,ext.

There has got to be a way to shake up everyones way of thinking.Tv,radio comercels,newspaper ads,something.T-shirts are ok,bumper stickers yah,but do you pay any attention when your busy doing other things.Coeliac uk is five years ahead of us here in the US.YOU CAN'T BREATH WHEAT IN TO YOU BODY,BE AROUND A WHEAT MILL,OR USE IT.All will couse a reatsion.

It hi time people get the message that this is CELIAC not ''wheat allergy''.

:angry:


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

While I get your point, some people still aren't up to speed on allergy. And some people treat allergy with more respect than intolerance. (Celiacs, even a bad case, is not at all likely to have you dead 30 minutes after a small exposure. Anaphylactic allergies are. So, people assume if it won't kill you right away, it's not awful if you get a bit.) Definitely more education is needed, and for those of us willing to answer the questions and take the odd looks, starting by saying "I'm gluten intolerant; eating wheat, barley, rye, or oats will make me very sick." is a good start.

jendenise Rookie

Although you all may not agree wth my way of getting the seriousness across I like it: I let my food servers, cooks, etc know that I have Celiac Disease and that it is a SEVERE intollerance to wheat, gluten, barley, and oats, and that even cross contamination can harm me. Then I ask them if they know what Celiac Disease is and if they understand it, if they do I leave it at that. However, if they don't I simply let them know that even the smallest amount of the ingredients I listed can kill me or make me violently ill very quickly, and that I would prefer my meals w/o garnish and everything served seperately and to please cross reference any "iffy" ingredients with my Celiac card. As far as the general public goes, all my friends, family and doctors are knowledgeable about it, and I'm always informing people about it when I can find a discussion starter.

  • 2 weeks later...
Guest cd&dhspruehead

Doctors are not up to speed on CDd or DH.Its a food allergy to them.Meds have ''W''.Liqued & or pill.Its up to us to get the phormest to look it up if thay ever have the time.

Guest PastorDave

Hi! I'm PastorDave's wife. I love the way he tells people about his wheat "intolerence." He says, "well, it won't kill me at once, it will just kill me very slowly and painfully!" They get the idea!!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748

    westman3d
    Newest Member
    westman3d
    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.