Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Does Dh Always Mean Celiac?

JaneWhoLovesRain

Recommended Posts

pricklypear1971 Community Regular
pricklypear1971
Posted

Some people have other food sensitivities that seem to activate it (corn, salicylates, etc.). I've heard of people being on dapsone for years before DH recedes enough to be controlled just with gluten-free.

Sometimes it can pop up without reason, even gluten-free, as long as there are iga antibodies in the skin. It can be assumed some people take longer for the antibodies to leave the skin than others??

Also, some people here seem to be reporting activation with a glutening - people who never remember having a rash before.

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

Celiac.com Sponsor (A8-M):


cahill Collaborator
cahill
Posted

As for the association with thyroid disorders, his book says studies say that "20-30% of patients with DH also have thyroid abnormalities, as many do not have gastro symptoms." (Chapter 11)

Do other members who are 2 years gluten-free tell you they still have eruptions of it? (I know some who are only 1 year gluten-free do.)

Whatever the case, I hope you get some real answers tomorrow!

I have been gluten free for 2 1/2 years and I still have eruptions. Mine seems to be aggravated mostly by iodine.

And since I have Hashimoto's and am on thyroid meds ,iodine is not something I can totally eliminate from my diet.

I walk a VERY fine line between getting enough iodine for my thyroid health and not to much to set off my DH. The wonderful world of a celiac :rolleyes:

My daughter who is gluten free never had DH until after her celiac diagnoses BUT she was diagnosed with psoriasis for many years

cahill Collaborator
cahill
Posted

I'll let you know tomorrow what happens.

Please let us know how it goes :)

  • 3 months later...
Lolli Newbie
Lolli
Posted

As horrific as DH has been, I'm thankful because I would have never known something was seriously wrong.

squirmingitch Veteran
squirmingitch
Posted

As horrific as DH has been, I'm thankful because I would have never known something was seriously wrong.

I feel the same way Lolli. I count dh as both a blessing & a curse.

jlaw Apprentice
jlaw
Posted

Oh man. have followed this whole thread with interest. My GP (equivalent to a PCP I think,) and my GI have said I needed an intestinal biospsy for celiac confirmation, despite a +ve skin biopsy. I was happy enough with a skin biopsy, but had to have a colonoscopy for strong family Hx of bowel cancer, so decided to have both done at the same time before I went gluten-free. But it's come back only with chronic inflammation with villi all still intact. He only took one sample... bloods are negative for coeliac. Any thoughts on what to do with this?? In reality, it doesn't actually change anything. I still have to be completely gluten-free anyway because of the Dh. But do I actually have Celiac?? So confused

cahill Collaborator
cahill
Posted

Oh man. have followed this whole thread with interest. My GP (equivalent to a PCP I think,) and my GI have said I needed an intestinal biospsy for celiac confirmation, despite a +ve skin biopsy. I was happy enough with a skin biopsy, but had to have a colonoscopy for strong family Hx of bowel cancer, so decided to have both done at the same time before I went gluten-free. But it's come back only with chronic inflammation with villi all still intact. He only took one sample... bloods are negative for coeliac. Any thoughts on what to do with this?? In reality, it doesn't actually change anything. I still have to be completely gluten-free anyway because of the Dh. But do I actually have Celiac?? So confused

What you do with it is know that your doc did not take enough biopsys . I believe the standard is 8 biopsys.** I just realized you said colonscopy.** Did he do an endoscopy also or just a colonoscopy(lower) ? If he was looking for celiac he should have done an endoscopy ( upper) and taken (I believe ) 8 biopys of the small intestine .

You ask Do you have celiac? The positive DH testing and dietary response is a celiac diagnoses . I am not a doctor but in my humble uneducated DH and celiac mind , YES You are celiac .

** if you read my signature you will see that my GI doc would agree with me :)

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Oh man. have followed this whole thread with interest. My GP (equivalent to a PCP I think,) and my GI have said I needed an intestinal biospsy for celiac confirmation, despite a +ve skin biopsy. I was happy enough with a skin biopsy, but had to have a colonoscopy for strong family Hx of bowel cancer, so decided to have both done at the same time before I went gluten-free. But it's come back only with chronic inflammation with villi all still intact. He only took one sample... bloods are negative for coeliac. Any thoughts on what to do with this?? In reality, it doesn't actually change anything. I still have to be completely gluten-free anyway because of the Dh. But do I actually have Celiac?? So confused

In this link is the info. you need.

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/

It states that a dx is a dx of celiac. So many docs do NOT understand this & so it can be risky to have the blood or the endoscopy b/c when they turn up neg. then so many stupid docs THEN want to say you do NOT have celiac disease.

The link I provided is a long read but it will explain so much about why we with dh so often turn up neg. on blood & endo.

cahill Collaborator
cahill
Posted

Thank you :)

Awesome information , bookmarked :)

squirmingitch Veteran
squirmingitch
Posted

YVW Chill.smile.gif

jlaw Apprentice
jlaw
Posted

In this link is the info. you need.

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/

It states that a dx is a dx of celiac. So many docs do NOT understand this & so it can be risky to have the blood or the endoscopy b/c when they turn up neg. then so many stupid docs THEN want to say you do NOT have celiac disease.

The link I provided is a long read but it will explain so much about why we with dh so often turn up neg. on blood & endo.

Squirming, this is awesome. Thank you so much for all the time you have put into this.

jlaw Apprentice
jlaw
Posted

What you do with it is know that your doc did not take enough biopsys . I believe the standard is 8 biopsys.** I just realized you said colonscopy.** Did he do an endoscopy also or just a colonoscopy(lower) ? If he was looking for celiac he should have done an endoscopy ( upper) and taken (I believe ) 8 biopys of the small intestine .

You ask Do you have celiac? The positive DH testing and dietary response is a celiac diagnoses . I am not a doctor but in my humble uneducated DH and celiac mind , YES You are celiac .

** if you read my signature you will see that my GI doc would agree with me :)

Hi Chill, He did a lower (colon)and upper (gastro). Thanks for your advice. And I think you're right. I heard that they should take at least 5... I was just confused as to whether I actually have gut symptoms, or purely just skin related... Squirming's links have helped me to realise that the gut is still involved for DH patients. Thanks again :-)

squirmingitch Veteran
squirmingitch
Posted

Squirming, this is awesome. Thank you so much for all the time you have put into this.

YVW jlaw. The hardest part was that I have alllllll these references bookmarked but I do not have my bookmarks organized.sad.gif And thus, it takes me forever to find what I'm looking for when i want to link to some reference. All my dh bookmarks are mixed in with general celiac bookmarks & included in all that are gluten-free recipes, ingredients, cooking tips & so forth.blink.gif

Archived

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

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


  • Member Statistics

    • Total Members
      129,635
    • Most Online (within 30 mins)
      7,748
    Jaxa
    Newest Member
    Jaxa
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Curious if I should quit my job

      By Scott Adams · Posted

      Wishing you lots of luck--let us know how it turns out!
    • ohmichael
      Curious if I should quit my job

      By ohmichael · Posted

      Thank you both for your input! trents: yes I completely agree, it's simple anatomy. The walk-in doctor I saw even said to me, "you cannot get exposure or get sick if it only got in your respiratory system" to which I replied, "If I inhaled it, it's in the mucous I swallow that leads to my gut." I was honestly baffled I had to explain that to her. Thanks for your comments! Scott Adams: Thanks for your advice, yes I agree I think that's ultimately what I have to do especially while times are getting tougher in this current economy! Hopefully I find something new and equitable or better, in a quick manner! Please send prayers and best wishes for me to find a new job quickly, I wore the N95 masks today and it seems like I'm gonna be okay but I literally have to hazmat wash my clothes and myself when I get home. I think my current exposure will have time to recover while I'm wearing the masks at work. Thank you all again!
    • Scott Adams
      Advice please

      By Scott Adams · Posted

      Parent-to-parent, I hear your exhaustion and worry loud and clear – what you’re describing goes far beyond typical toddler troubles. Your daughter’s screaming night pain, terrible bloating, stalled growth, and constant infections are textbook red flags for celiac disease or another serious gluten-related condition. While her blood test came back negative, there are critical reasons not to rule it out yet. First, celiac tests are notoriously unreliable in kids under 3 – their tiny immune systems often don’t produce enough antibodies to register on standard blood work, especially if she wasn’t eating consistent gluten beforehand (which you mentioned was a struggle). Her iron deficiency alone is a glaring clue, as it’s one of the most common signs of undiagnosed celiac in little ones. The fact that she’s already dairy/soy-free yet still suffering suggests something bigger is at play. It could still be celiac (a pediatric GI should consider an endoscopy with biopsies, the gold standard for diagnosis), or possibly non-celiac gluten sensitivity (NCGS) – which doesn’t show up on tests but can cause identical agony. Her recurring mouth ulcers and infections also hint at the immune dysfunction seen in celiac. Until you see the specialist, I’d quietly start a gluten-free trial (after documenting her current symptoms carefully with photos/videos of the bloating and pain episodes). If you see improvement in 3-4 weeks, that’s powerful evidence to bring to the doctors. You’re not being dramatic – you’re being the exact advocate your daughter needs. If the pediatrician brushes you off, look them in the eye and say: “What else could explain ALL these symptoms together? If it’s not celiac, what’s our next step to stop her suffering?” Keep pushing – moms’ instincts are rarely wrong about this stuff. For now, focus on small wins: snap daily pics of her belly to show the distension, ask for a fecal calprotectin test (checks gut inflammation), and know this internet stranger is rooting for you both. She’s lucky to have you fighting for her.
    • nanny marley
      Help needed

      By nanny marley · Posted

      So I have been going threw celiac testing for some time unfortunately I had been 1 year gluten free Wen I had the blood test do came back negative I had other blood tests done my calprotein came in very high and my crp was elevated have been sent to gastroenterology she has put me in for a colonoscopy wat I can't understand it says take 2 tablets  6 days before of  senna for 5 day before my plenvu prep which I start tomorrow yet it says if ibd colitis crone's or others are present don't take the senna but I don't know if I have these yet my brother tho has the same symptoms has just be diagnosed with colitis and didn't take the senna can anyone shed light on this for me  has I  start the prep tomorrow I already have very loose bowels seems a lot to go threw for 6 days ? I'm new to all this do I'm just a little confused here ant help round be appriciated 🙏 also I'm so anxious wat to expect with the colonoscopy has anyone got any advise thanks in advance 🤗
    • trents
      Advice please

      By trents · Posted

      Can you post what blood tests were done specifically for celiac disease, the results and reference ranges if available? If her gluten intake was reduced prior to the blood draw it certainly could result in false negatives on some tests. There is also the possibility that she has NCGS (Non Celiac Gluten Sensitivity). 
×
×
  • Create New...