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

  • 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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      27

      My journey is it gluten or fiber?

      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    2. CatS
      - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

      Thank you! It’s very easy to make seedy crackers. They are much more nutritious than commercial gluten free bread,
    3. Samanthaeileen1
      - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve. thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poo...
    4. Wheatwacked
      - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      My son was diagnosed when he was weaned in 1976 after several endoscopies. Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree. Whether an endoscopy is positive or negative is irrelevant. That may happen even with endoscopy. Pick your doctors with that in mind. In the end...
    5. RMJ
      - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1. Genetic testing. Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748
    lovinlifeafter60
    Newest Member
    lovinlifeafter60
    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

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
×
×
  • 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.