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

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

  • 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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread

      Your concern about certified gluten-free cricket powder is completely valid, as cross-contamination in both feedstock and processing is a real issue. Currently, the availability of certified gluten-free options is limited, but brands like Chapul and Entomo Farms, which I believe have offered products processed in dedicated facilities and labeled gluten-free...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,543
    • Most Online (within 30 mins)
      7,748
    Jeanette K.
    Newest Member
    Jeanette K.
    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

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • 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.