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

Benefit To Getting Diagnosed?

MandeeTheGreat

Recommended Posts

MandeeTheGreat Newbie
MandeeTheGreat
Posted

Does anyone know if the gluten rash "Dermatitis herpetiformis" occurs only with Celiac disease or can it occur with gluten intolerance as well? I am getting mixed results while researching. Are there any benefits to being diagnosed Celiac? I get very ill from eating wheat (gastrointestinal symptoms, lethargy, gluten rash, nausea, foggy mind, stomach cramps etc) and I realized that, so I removed it from my diet. Then I told my doctor about it and she said there was no reason to do any testing, that if I knew it was a problem I just shouldn't eat it. Gluten isn't healthy anyway. But now I am wondering if it would be good to find out for sure if I have Celiac disease or just am gluten intolerant. 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Google " Celiac centers" and read what the experts say. DH is a skin form of Celiac. There are many rashes that are not DH. You can have the rash biopsied next to a fresh blister for a diagnosis of Celiac.

A few reasons for getting diagnosed:

If you are ever hospitalized, jailed or go to a nursing home, etc - these places do a terrible job, for the most part at gluten-free anyway, but do not have to give you gluten-free food without a diagnosis.

Getting your kids tested for Celiac is easier, and standard care, if a parent has Celiac.

If you are at an all day event that does not allow outside food, you will need a doctors note to get to bring your own food.

Insurance may not want to pay for follow- up care like blood tests to check for vitamin deficiencies, bone density scans in a young person, etc.

For kids in school or college - you need the diagnosis to get out of meal plans, special accommodations for classroom activities, etc

MandeeTheGreat Newbie
MandeeTheGreat
Posted
  • Author

Thank you for that information. Is there any way to be tested without consuming gluten? I dont think I could handle being that sick just to test for it. I recently had a breakout of the DH but now its healing up. I am not sure if it can still be tested if its not new?? I guess I am off to do more research. I have a hard time accepting that I could have celiac :( 

kareng Grand Master
kareng
Posted

You need to eat gluten to be tested.  And the DH needs to be "fresh" from what I have seen.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,059
    • Most Online (within 30 mins)
      7,748
    VictoriaNaoma
    Newest Member
    VictoriaNaoma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Hi everyone  This has been a crazy year so far... How many people actually get entire sensory overload from gluten or something similar ?  My jaw is going nuts ..and that nerve is affecting my upper back and so on ...  Bones even hurt.  Brain fog. Etc  I had eggs seemed fine.   Then my aid cooked a chicken stir fry in the microwave because my food order shorted a couple key items .   I was so hungry but I noticed light breading and some ingredients with SOY !!! Why are we suffering with soy ? This triggered a sensitivity to bananas and gluten-free yogurt it seems like it's a cycle that it goes on.  The tiniest amount of something gets me I'm guessing the tiny bit of breading that I took one tiny nibble of ...yikes ..im cringing from it .. Feels like my stomach is going to explode yet still very hungry 😔  How long does this last?! Thank you so much 
    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      This is an older article, but may be helpful.  
    • gfmom06
      Celiac getting dentures

      By gfmom06 · Posted

      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
×
×
  • 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.