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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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  • Posts

    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
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      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
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      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
      How to navigate living with dermatitis herpetiformis

      By Rogol72 · Posted

      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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