Possible DH, negative endoscopy

[kalest]

Hello! 
 

I’m wondering if its possible to still have DH/celiac without a positive endoscopy.

I have an incredibly itchy rash that lasts for months without any way to treat it.

on august 5th it covered my entire arm and was at its worst (Usually it’s symmetrical but this time it wasn’t.) 

that same day I cut out gluten entirely and it was 95% gone within a week. This rash I got in march and nothing would work. 

I’ve been to the derm 3x and got a visual diagnosis of something different each time (granuloma annulare, contact dermatitis, eczema)

Prior to going gluten free I had an endoscopy for other reasons and it came back negative for celiac. 
 

could it still be possible to have DH even with a negative endoscopy biopsy? 
 

thanks in advance! 

[newtonfree]

Did you have bloodwork done, like anti-tTG and/or genetic testing?

No single test for celiac disease is definitive - every test has a given false negative and false positive rate. Diagnosis typically involves multiple tests in order to be certain. The more tests are positive or negative, the more confident you and your doctor can be that the diagnosis has been ruled in or ruled out, respectively.

Regarding your question about endoscopy - yes, it is entirely possible to have a negative biopsy as an actively symptomatic celiac. You may find this article informative. In essence, the inflammation from celiac disease can be patchy, which means that it can potentially evade any given biopsy. Gastroscopy only reaches the first part of the duodenum, and some endoscopists take as few as two biopsies. The small intestine is 22 feet long, and a gastroscope only reaches the first several inches.

Has your dermatologist ever biopsied a lesion? There are histological findings as well as bloodwork findings that help differentiate DH from other rashes.

[kalest]

Hi! Thanks for the reply.

I have not had any genetic testing or blood tests for celiac. Just the endoscopy.

Thank you so much for the information. I know my endoscopy had 3 biopsies so I assume that is too little. 
 

my dermatologist has only diagnosed through visual only. Never took a biopsy which is so frustrating.

 

[newtonfree]

26 minutes ago, kalest said:

Hi! Thanks for the reply.

I have not had any genetic testing or blood tests for celiac. Just the endoscopy.

Thank you so much for the information. I know my endoscopy had 3 biopsies so I assume that is too little. 
 

my dermatologist has only diagnosed through visual only. Never took a biopsy which is so frustrating.

 

Don't be too frustrated - it was a question, not a statement about what they "should" have done. Depending on their differential diagnosis (the list of conditions they suspect it could be), sometimes a biopsy is contraindicated - the location on the body, pain level, difficulty healing, risk of infection, etc for certain skin conditions in certain spots can make it not worth doing, and only your dermatologist would be in a position to know that.

But given that you have not had bloodwork, no doctor could definitively rule out celiac disease on the basis of a negative biopsy on gastroscopy. There are many diagnostic approaches, but the literature supports using multiple modalities in most cases (e.g. as many as possible out of positive anti-tTG, positive identification of known high-risk genes, symptom improvement on gluten-free diet, symptoms recurrence on gluten challenge, signs and symptoms of malabsorption, and positive biopsy on endoscopy).

[ernieb]

regarding DH:  I call this situation gluten sensitivity, and in my case, I always test negative for celiac.  12 years into this, I have controlled it best ( whenever I'm exposed to gluten or even think I've been exposed) with Dapsone 50 mg daily.  Not a pleasant drug as it reduces one's red blood count and hemoglobin, so I'm chronically anemic but it's tolerable given the other choice of itching like crazy