Testing for Dermatitis Herpetiformis while (mostly) gluten free..?

[Boudicca]

This may sound odd, but if it works for me, it may spare others of a gluten challenge hell, as well. 

For the sake of brevity, I'll just admit I went ahead with a strict gluten-free diet a few months ago without getting tested. It was kind of an experiment, but not for fun; as a health conscious 28-year-old with a rapidly declining wellbeing, I was out of options. Of course, I didn't think I could possibly have celiac, but I'm in such utter awe of watching previous mental and physical debilitations begin to melt away, and now can't bear the thought of returning to a gluten-filled diet. 

Back to the subject at hand, upon further investigation, I've come to suspect that the maddeningly itchy patches of tiny bumps that'd pop up on my forearms from time to time sound an awful lot like dermatitis herpetiformis (instead of the nickel allergy I falsely attributed them to - especially when I don't even wear bracelets!). 

Now, despite the fact these bumps/blisters formerly occurred at random, both times I've unintentionally glutened myself, a small patch has appeared a few days later. Maybe they're suddenly becoming an indication of gluten ingestion? Regardless, since it seems like DH equates celiac, instead of returning to six weeks of misery, would a spontaneous breakout contain sufficient antibodies for me to be tested (for DH)? 

If so, the idea would be to gluten myself once more, wait for the breakout, and schedule an appointment. Ridiculous as it sounds, maybe this would be a way to circumvent a ton of agony.

Thanks much for your answers. This forum has been immensely insightful for those of us just trying to get our lives back. 

[cyclinglady]

Your theory might work.  I do not have DH, but just one gluten exposure might not get the results you want.  Most members report that you still need to consume gluten for 6 to 12 weeks, even for a skin biopsy.  The rash needs to be very active.  A dermatologist would need to biopsy it.  The skin punch must be adjacent to the rash (please find a celiac savvy dermatologist).  But know that celiacs can have many different kids of rashes besides DH.  

Learn more about the skin biopsy:  
 

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

Know  that those who have DH must be super strict on their diet.  Even processed gluten-free foods can be a problem.  I encourage you to browse through  the DH section of the forum.  Look for posts by Squirmingitch or Apprehensive Engineer.  These ladies are so knowledgeable!  

 

[Boudicca]

  On 6/11/2020 at 4:40 AM, cyclinglady said:

Your theory might work.  I do not have DH, but just one gluten exposure might not get the results you want.  Most members report that you still need to consume gluten for 6 to 12 weeks, even for a skin biopsy.  The rash needs to be very active.  A dermatologist would need to biopsy it.  The skin punch must be adjacent to the rash (please find a celiac savvy dermatologist).  But know that celiacs can have many different kids of rashes besides DH.  

Learn more about the skin biopsy:  
 

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

Know  that those who have DH must be super strict on their diet.  Even processed gluten-free foods can be a problem.  I encourage you to browse through  the DH section of the forum.  Look for posts by Squirmingitch or Apprehensive Engineer.  These ladies are so knowledgeable!  

 

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Thank you for the resources! Despite failing to find much related to my question at the start, I incidentally saw a related post with conflicting suggestions. One claimed a gluten-filled diet must be followed, while the other argued that, as long as there are ample lesions or blisters to test, it could theoretically be done. I assume the first suggestion was given to guarantee the latter, but obviously need to speak to a professional to know for sure. 

Thank you, again, for addressing the situation! If everything does play out successfully, I'll be sure to spread the word. 

[Scott Adams]

If you’ve already noticed a strong connection between the blisters appearing whenever you eat gluten, the chances are it’s probably DH. On one hand I understand why you’d not want to eat gluten daily for weeks to verify this, but on the other if you’ve already found the answer to their cause, do you really need a formal diagnosis? The downside to a diagnosis would be higher private heath and life insurance rates, something you might not have considered.

I bring this up only because you’ve already seen other heath go away on a GF diet, and you indicate the it would be “agony” to start eating gluten again.

[jas3734]

  On 6/12/2020 at 6:11 AM, Scott Adams said:

If you’ve already noticed a strong connection between the blisters appearing whenever you eat gluten, the chances are it’s probably DH. On one hand I understand why you’d not want to eat gluten daily for weeks to verify this, but on the other if you’ve already found the answer to their cause, do you really need a formal diagnosis? The downside to a diagnosis would be higher private heath and life insurance rates, something you might not have considered.

I bring this up only because you’ve already seen other heath go away on a gluten-free diet, and you indicate the it would be “agony” to start eating gluten again.

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I am not the OP but thanks for acknowledging that it is ok to not have a formal diagnosis.  I struggle with this as I refuse to eat gluten for the tests.  The saddest part to me is that I had to suffer for a year with this because no doctor had any idea of what it was.  I wish I had found someone who could have suggested the testing back when I had a year of agony.  

I still have flare ups when I have an accidental gluten ingestion.  They tend to last a few weeks.  But I try to remind myself that it will go away now that I know it is the gluten causing it.  I am having a flare up now and today I started a low iodine diet in hopes that will help as I understand that iodine must be present for the reaction.  But who knows... I have yet to find a physician who knows anything about this and most of the dermatologists where I live mostly focus on the aesthetic nature of the field.  If Botox cured DH I'd be in good hand with them though!