negative dermatitis herpetiformis skin biopsy

[mack4m]

Hi

My husband had a negative skin biopsy for dermatitis herpetiformis but positive tTga-IgA blood work for celiac disease.  His IgA antibodies came back normal.  He has a rash with intense itching that nothing works.  Is it possible for the dermatitis herpetiformis skin biopsy to come back as eczema and still have celiac?  Also, can anyone recommend anything for the intense itching?

[trents]

Welcome to the forum, @mack4m!

The fact is, most celiacs don't manifest with dermatitis herpetiformis. Those with dermatitis herpetiformis are in a decided minority.

Another fact is, many or most dermatologists don't know how to properly biopsy for dermatitis herpetiformis so I certainly would not write dermatitis herpetiformis off just yet. Lowering iodine in he diet can help with the itching. A medication called Dapsone is effective in many cases to suppress dermatitis herpetiformis.

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

[mack4m]

Thank you for responding.  I will definitely mention to him about lowering iodine in his diet.  I did hear about Dapsone.  He is still working his way through a myriad of doctors.  

[trents]

Does your hubby also have the gut manifestation of celiac disease?

[mack4m]

He has issues with lactose but not really.  Just a rash that is horribly itchy for him.  He has been gluten free for almost a month now.

[trents]

Has your hubby had the endoscopy with biopsy to check for damage to the small bowel villi? Many have damage but are asymptomatic. We call them "silent celiacs".

[mack4m]

No not yet. Working our way through doctors. So far dermatologist then allergist then gastro. We were just confused by the positive blood test and negative skin biopsy. 

[knitty kitty]

Welcome to the forum, @mack4m!

Dairy can cause the same autoimmune response as gluten does in about half of us.  Dairy is also high in Iodine.  Removing dairy from the diet may be helpful.

High histamine levels, which are part of the immune response to gluten and dairy, can cause eczema and hives.  Other food sensitivities (IgE responses) can develop if histamine levels continue at high levels.  It's important to reduce histamine levels as soon as possible.  It might be better to see the gastro doctor to get a diagnosis first.  Histamine levels usually fall after adopting a gluten free diet.  However, one must be consuming gluten in order to produce the antibodies and intestinal damage used for a "gold standard" diagnosis. 

Nutritional deficiencies can occur in Celiac Disease.  Vitamin B12, B 6 Pyridoxine, and Thiamine B 1 make Diamine Oxidase which breaks down histamine.  Correcting nutritional deficiencies in the newly diagnosed can help our system correct the histamine levels and heal the digestive system.

If food sensitivities persist after adopting a gluten free, dairy free, low histamine Paleo diet, then go to the allergist.  We've had so many people on the forum say they were reacting to all sorts of foods.  It's the high histamine.  

Have you thought about genetic testing for common Celiac genes?

Hope this helps!  

Relevant Reading....

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

Histamine Intolerance Originates in the Gut

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/

 

[Scott Adams]

This article may also be helpful--see the section 3/4 down:

 

[mack4m]

Thank you for that information. It makes a lot of sense now for us. I’m going to see if I can get him in sooner to see the gastroenterologist. 

[Wheatwacked]

On 1/15/2024 at 5:44 PM, mack4m said:

Is it possible for the dermatitis herpetiformis skin biopsy to come back as eczema and still have celiac?

Was the biopsy done on the rash or skin next to the rash?  I'd get a second biopsy done by a dermotologist with experience in dermatitis herpetiformis biopsy.  The biopsy must be skin adjacent to the rash.  With most other rashes the rash is biopsied.   With no other obvious symptoms it is strange.  Silent celiac disease with active dermatitis herpetiformis is not unheard of. 

[hayley3]

I use Chiggerex cream found at Walmart.

I just had the biopsy done and they would not do it adjacent to the rash, but mine did come back positive.  Miracle that is.

[mack4m]

On 1/15/2024 at 5:44 PM, mack4m said:

Hi

My husband had a negative skin biopsy for dermatitis herpetiformis but positive tTga-IgA blood work for celiac disease.  His IgA antibodies came back normal.  He has a rash with intense itching that nothing works.  Is it possible for the dermatitis herpetiformis skin biopsy to come back as eczema and still have celiac?  Also, can anyone recommend anything for the intense itching?

 

On 1/15/2024 at 6:47 PM, trents said:

Does your hubby also have the gut manifestation of celiac disease?

He says no. I think he does. 

On 1/15/2024 at 7:50 PM, trents said:

Has your hubby had the endoscopy with biopsy to check for damage to the small bowel villi? Many have damage but are asymptomatic. We call them "silent celiacs".

No the soonest appt isn’t until Feb 9th. 

[mack4m]

On 1/15/2024 at 6:05 PM, trents said:

Welcome to the forum, @mack4m!

The fact is, most celiacs don't manifest with dermatitis herpetiformis. Those with dermatitis herpetiformis are in a decided minority.

Another fact is, many or most dermatologists don't know how to properly biopsy for dermatitis herpetiformis so I certainly would not write dermatitis herpetiformis off just yet. Lowering iodine in he diet can help with the itching. A medication called Dapsone is effective in many cases to suppress dermatitis herpetiformis.

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

After all the stuff I read. I truly believe it is dermatitis herpetiformis. After Endo, we will know for sure if celiac. Then he will go back to dermatologist 

[CatherineWang]

I have just read your posting and thought I should add a few things. It really isn't easy dealing with negative skin biopsies, especially if heavy itching is still involved. I've been having some skin problems of my own recently, so I know all too well how that frustration must feel. It is really hard to find what's going to give me relief among all those different lines. A while back, I went through a reference dermatology textbook that really gave me very useful information; you may find it helpful in answering your queries. Here is the link: www.therapeutique-dermatologique.org While it's theoretically possible that his biopsy will show eczema, he will still have celiac disease. You might, in his case, want to get a second opinion from a dermatologist or, even better, from a specialist who might be able to suggest other causes of the blistering and different treatments for the itching.