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Does Dh Always Mean Celiac?

JaneWhoLovesRain

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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.

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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 :)

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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

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    • Aretaeus Cappadocia
      Skin issues

      By Aretaeus Cappadocia · Posted

      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Celiac flare years after diagnosis

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      Celiac flare years after diagnosis

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