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HELP! should I continue the gluten challenge

SunshineSometimes

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SunshineSometimes Newbie
SunshineSometimes
Posted

Hi, I am currently one week into the gluten challenge and I'm a mess!! I have had Gastro and other health issues my entire life.  In my early 20s things were getting so bad, I did an emimination diet, discovered gluten to be the culprit and cut it out.  I never planned to check for celiac, but  As I've gotten older I've found that my once occasional stomach issues I usually chalked up to accidental gluten intake were coming more and more often (bouts of sever bloating, stomach pain, diarrhea/constipation, and more recently nausea and vomiting ).  Also 2 of my four children have Gastro/other issues that improved dramatically when I almostly completely removed gluten from their diet.  Of course, as a self diagnosed anti gluten mom I'm having a hard time getting any pedesatric Drs to take my gluten concerns seriously so I decided it was time to bite the bullet and get diagnosed, or move on, so I can get going in the right direction for my kids and myself.  

    I had a biopsy scheduled for three months out and despite my gastros recommendation not to add gluten because of my sever reaction, and his assumption I was getting more gluten then I thought. I did anyway ?? ?, I just wanted to be sure.  I don't want to put my kids through a gluten challenge and all the testing unless I'm sure there is a genetic predisposition.    I started eating gluten on Sunday, resulting in normal Gastro issues and then by Tuesday I broke out in DH all over my lower back, hips, ankles, feet and fingers.  I had the rash confirmed as DH and my Gastro bumped my biopsy to today.  Here's my question, I'm concerned the biopsy is going to be negative because I've only been consuming regular amounts of gluten for one week.  I planned to at least keep eating it for another week or so in hopes of getting a positive blood test, but I'm so sick and I think the rash is starting on my arms... My dermatologist seemed to think that if I had enough antibodies to create the rash, the blood work should certainly come back positive. Is this true????  Has anyone had DH and then a negative a blood test??   I want so badly to know difenitivly  either way, and although my gastro instructed me to stop eating it, I'm tempted to continue for the blood work...... Is a positive DH rash enough??? There is so much confusing information out there!!!! 

Sorry for the long winded question!! I appreciate any help I can get ?  

Oh and I had the genetic testing done several years ago and I tested positive for a combination of them. 

   

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SLLRunner Enthusiast
SLLRunner
Posted

Welcone, @SunshineSometimes. :) Have you been diagnosed with DH? I ask because DH is an instant celiac diagnosis. In other words, has an area adjacent to the rash been biopsies and come back as positive for DH?

If not, then you must continue eating gluten until all testing is complete.

GFinDC Veteran
GFinDC
Posted

Right, if you have DH, you have celiac disease.  An Endoscopy may not show anything conclusive because the immune attack is focused on the skin, not the gut.  That can change over time though.

Open Original Shared Link

...

Blood tests for other antibodies commonly found in people with celiac disease—antiendomysial and anti-tissue transglutaminase antibodies—supplement the diagnostic process.  If the antibody tests are positive and the skin biopsy has the typical findings of DH, patients do not need an intestinal biopsy to confirm the diagnosis of celiac disease.
Read more at Open Original Shared Link

...

squirmingitch Veteran
squirmingitch
Posted

Sorry guys but your info. is a bit out of date. If one has a dx of dh then NO FURTHER TESTING IS NEEDED. A dx of dh IS a dx of celiac disease. See:

Open Original Shared Link

Your blood would likely test false negative anyway if you have dh. Here's an excerpt:

 Many people with DH have no digestive symptoms and only about 40% of them have positive blood tests (serology) for celiac disease; however, they almost always have the same gluten-dependent intestinal damage as people with celiac disease.

From:

Open Original Shared Link

And you may continue to break out even after being strict gluten-free for a while. See:

Open Original Shared Link

You need to be pristine in your diet!!!!!!!!!!!!!! Dh is extremely sensitive to the slightest gluten exposure!!!!!!!!!

Read this & follow the links contained therein:

 

 

SunshineSometimes Newbie
SunshineSometimes
Posted
  • Author

Thanks for the quick responses!!!! My dermatologist who seems well versed about celiac and works with a Gastro on the matter told me that in very rare cases DH is not from celiac, bust since I just added gluten back Three days prior to the rash, I have celiac symptoms and my Drs suspect celiac there is really no reason to venture down other avenues.  She told me if I absolutely wanted she would biopsy the rash, but that it wouldn't confirm the rash was from celiac or not, just confirm DH, which it is 100%.  She didn't think the scar and added discomfort was worth it.  She sent all the information to My Gastro and he agreed with her.  My Gastro also seemed confident after doing my endoscopy that lab results would show something.... Will see

    Ok I'm going to hang up my web MD doctorate ?   , trust my Drs, stop eating gluten, and get my kids genetic testing! Thank u!! 

   

SLLRunner Enthusiast
SLLRunner
Posted
 

Thanks for the quick responses!!!! My dermatologist who seems well versed about celiac and works with a Gastro on the matter told me that in very rare cases DH is not from celiac, bust since I just added gluten back Three days prior to the rash, I have celiac symptoms and my Drs suspect celiac there is really no reason to venture down other avenues.  She told me if I absolutely wanted she would biopsy the rash, but that it wouldn't confirm the rash was from celiac or not, just confirm DH, which it is 100%.  She didn't think the scar and added discomfort was worth it.  She sent all the information to My Gastro and he agreed with her.  My Gastro also seemed confident after doing my endoscopy that lab results would show something.... Will see

    Ok I'm going to hang up my web MD doctorate ?   , trust my Drs, stop eating gluten, and get my kids genetic testing! Thank u!! 

   

Your doctors are wrong.

Read the links that @squirmingitch posted.  If you still have DH, you have the skin adjacent tested, not the lesions.  If the doctors suspect celiac then they have a 100% duty to test for DH and/or to take blood work and do an endescope.

squirmingitch Veteran
squirmingitch
Posted
 

 She told me if I absolutely wanted she would biopsy the rash, but that it wouldn't confirm the rash was from celiac or not, just confirm DH, which it is 100%.  

   

DH is not caused by anything else but Celiac Disease. A dh biopsy, if positive for dh, would conclusively confirm DH & therefore celiac.

Dermatitis herpetiformis (DH) is a rare but persistent immunobullous disease that has been linked to coeliac disease (American spelling celiac), a Open Original Shared Link.

What causes dermatitis herpetiformis? 

  • DH and coeliac disease are due to intolerance to the gliadin fraction of gluten found in wheat, rye and barley. 
  • Gluten triggers production of IgA antibodies and an autoimmune process that targets the skin and gut.

From:

Open Original Shared Link

 

************************************************************************

Dermatitis herpetiformis is a disease of the skin caused by the deposition of IgA in the papillary dermis, which triggers an immunologic cascade, resulting in neutrophil recruitment and complement activation. Dermatitis herpetiformis is the result of an immunologic response to chronic stimulation of the gut mucosa by dietary gluten.

From:

Open Original Shared Link

**********************************************************************************

Dermatitis herpetiformis (DH) is an autoimmune, pleiomorphic, papulovesicular disorder associated with celiac disease and gluten sensitivity.

From:

Open Original Shared Link

************************************************************************

What is Dermatitis Herpetiformis (DH)?

Dermatitis herpetiformis (DH) is a severe, itchy, blistering skin rash. DH is a chronic condition that is considered to be the skin form of celiac disease.

From:

Open Original Shared Link

***************************************************************************************

What causes dermatitis herpetiformis?

Dermatitis herpetiformis is associated with a bowel disorder known as coeliac disease.  

From:

Open Original Shared Link

****************************************************************************

Dermatitis herpetiformis is an intensely pruritic, chronic, autoimmune, papulovesicular cutaneous eruption in patients who have celiac disease.

All patients with dermatitis herpetiformis have celiac disease

From:

Open Original Shared Link

***********************************************************************************

What causes dermatitis herpetiformis?

Despite its name, the herpes virus does not cause DH.

DH is caused by a sensitivity or intolerance to gluten.

From:

Open Original Shared Link

 

 

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SunshineSometimes Newbie
SunshineSometimes
Posted
  • Author

Thank you everyone for the kind and informative responses, I know what I should do.  ?

SunshineSometimes Newbie
SunshineSometimes
Posted
  • Author

Thank you everyone for the kind and informative responses, I know what I should do.  ?

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      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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