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

  • 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. Scott Adams
      - Scott Adams commented on dixonpete's blog entry in Pete Dixon
      10

      A video with researcher William Parker about Helminthic Therapy

      Too much there to address, but here are a few things to address: Chronic diseases are solely due to industrialization: Chronic diseases have multiple causes, including genetics, lifestyle choices, and environmental factors. Helminths are beneficial for everyone: Not all helminths are beneficial; some can cause serious health issues. The idea...
    2. Scott Adams
      - Scott Adams replied to Jean Shifrin's topic in Traveling with Celiac Disease
      4

      Travel Abroad

      Around 5 years ago I visited Tokyo, and luckily had my sister in law with me who is from there, otherwise it would have been more difficult. The bottom line is that there are tons of naturally gluten-free food options there, but you need to be able to communicate your needs to restaurant staff. Here is a gluten-free restaurant card for American visitors...
    3. Scott Adams
      - Scott Adams replied to More2Learn's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Celiac Maybe a Possibility?

      Be careful about how much B6 you take, as it can cause issues if you take too much of it over time.
    4. Scott Adams
      - Scott Adams replied to Sarah Marie's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Bloodwork Help for my Teen

      Since it is such a long time away, you may want to have her go gluten-free for 2 months and see how she responds to the diet. If her symptoms go away, then that would be another indicator that she has celiac disease. Discuss this approach with her doctor, and if they want her to do an endoscopy, then she will need to consume lots of gluten--several slices...
    5. Scott Adams
      - Scott Adams replied to Tyoung's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increasing symptoms after going gluten free

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,034
    • Most Online (within 30 mins)
      7,748
    Janna Hyten
    Newest Member
    Janna Hyten
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Travel Abroad

      By Scott Adams · Posted

      Around 5 years ago I visited Tokyo, and luckily had my sister in law with me who is from there, otherwise it would have been more difficult. The bottom line is that there are tons of naturally gluten-free food options there, but you need to be able to communicate your needs to restaurant staff. Here is a gluten-free restaurant card for American visitors in Tokyo. It includes a request for a gluten-free meal and mentions common gluten-containing ingredients to avoid, like soy sauce and miso. English: Thank you. Japanese:   You can also download the Google Translate app, and besides being able to help you speak with people there about this, it has a camera app that translates Japanese text to English in your camera, so you can use it when shopping in a supermarket.
    • Scott Adams
      Celiac Maybe a Possibility?

      By Scott Adams · Posted

      Be careful about how much B6 you take, as it can cause issues if you take too much of it over time.
    • Scott Adams
      Bloodwork Help for my Teen

      By Scott Adams · Posted

      Since it is such a long time away, you may want to have her go gluten-free for 2 months and see how she responds to the diet. If her symptoms go away, then that would be another indicator that she has celiac disease. Discuss this approach with her doctor, and if they want her to do an endoscopy, then she will need to consume lots of gluten--several slices of wheat bread's worth per day, at least two weeks prior to the procedure.
    • Scott Adams
      Increasing symptoms after going gluten free

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      High dosage of B12 gave me life.

      By Scott Adams · Posted

      The one B vitamin that you don't want to take too much of is B6. Too much B9 can also lead to issues.   Vitamins and Minerals Generally Safe in Excess of Recommended Daily Allowance (RDA): Vitamin C (Ascorbic Acid): Excess vitamin C is usually excreted in the urine and is considered safe in higher doses. However, very high doses may cause digestive upset in some individuals. Vitamin B1 (Thiamine): Water-soluble, excess thiamine is generally excreted through urine. It is considered safe in higher doses but consult with a healthcare professional. Vitamin B2 (Riboflavin): Water-soluble, excess riboflavin is excreted in the urine and is generally safe in higher doses. Vitamin B3 (Niacin): Water-soluble, niacin has a well-defined upper limit, but moderate excess is often excreted. Consultation with a healthcare professional is advisable. Vitamin B5 (Pantothenic Acid): Water-soluble, excess pantothenic acid is generally excreted through urine and considered safe in higher doses. Vitamin B7 (Biotin): Water-soluble, excess biotin is typically excreted and is considered safe in higher doses. Vitamin B12 (Cobalamin): Water-soluble, excess B12 is typically excreted in the urine and is considered safe in higher doses. Consultation with a healthcare professional is advisable. Choline: While not a true vitamin, choline is water-soluble, and excess is usually excreted. It's considered safe in higher doses but consult with a healthcare professional.   Vitamins and Minerals with Potential for Toxicity in Excess of Recommended Daily Allowance (RDA): Vitamin A (Retinol): Excessive vitamin A intake, especially from supplements, can lead to toxicity, causing symptoms like nausea, dizziness, and, in severe cases, organ damage. Vitamin B6 (Pyridoxine): Long-term use of high doses of Vitamin B6, typically above 200 mg per day, can lead to toxicity. Symptoms of Vitamin B6 toxicity include nerve damage (neuropathy), which can cause pain, numbness, and difficulty walking. The condition is usually reversible once supplementation is stopped, but in severe cases, nerve damage may be permanent. Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions. Vitamin D -  While moderate excess may be excreted, prolonged high doses can lead to vitamin D toxicity, resulting in hypercalcemia, kidney damage, and other complications. Vitamin E (Tocopherols): Excess vitamin E is usually excreted, but high doses from supplements may have adverse effects. Obtaining it through a balanced diet is preferable. Vitamin K: Excess vitamin K from supplements can interfere with blood thinning medications and cause issues in some individuals. Iron: Excessive iron intake, especially from supplements, can lead to iron toxicity, causing symptoms like nausea, abdominal pain, and, in severe cases, organ failure. Zinc: While zinc is essential, excessive intake can lead to zinc toxicity, affecting the immune system and causing digestive issues. Copper: High copper levels, often from supplements, can lead to toxicity, causing symptoms such as nausea, vomiting, and liver damage. Selenium: Excessive selenium intake, especially from supplements, can lead to selenosis, causing symptoms like hair loss, gastrointestinal issues, and neurological problems.
×
×
  • Create New...