Looking for helpful advice/ help...

[Beck123]

Hi, I am a diagnosed celiac. I developed dermatitis herpetiformis, which led to my diagnosis about 4 years ago. I went strictly gluten free and my skin remained clear until about a year ago, after the birth of my daughter. After her birth, I have a lingering rash on the back of my neck that just will not go away. I am desperate.  I must be getting gluten from somewhere, but I simply cannot find its source. I never eat out, my family has went gluten free, I only eat foods that I know are gluten free, but for some reason I am still having symptoms of being glutened. I seem to have become more sensitive after the birth of my daughter as to where even the smallest amount of gluten sends my body upside down. Has any one else had this happen before after a pregnancy? Or is there something else that I am missing. I am desperate to find out what I am doing wrong and what I can do to get my body back to healthy again. Any input is appreciated. Thanks. 

[trents]

Welcome to the forum, Beck123!

Are you certain the rash on the back of your neck is DH? Could it be something else? Have you had the rash biopsied to confirm it is DH? Could something in your regular "safe" food consumption list have had a formulation change so that it is no longer gluten-free?

Edited August 30, 2022 by trents

[Scott Adams]

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

[knitty kitty]

Welcome to the forum, @Beck123!

Longtime DH sufferer here.  I had to remove everything dairy from my diet.  Not only am I lactose intolerant (I can't digest the sugar in milk, lactose), I am sensitive to the protein in milk, casein.  Not only does milk cause continuing inflammation and damage like gluten, dairy is high in iodine.  

I also found it very helpful to take extra Niacinamide, Vitamin B3, in addition to my B Complex supplement.  Niacinamide is the nonflushing form of Niacin.  Niacinamide has been shown to improve DH.  

Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide

https://pubmed.ncbi.nlm.nih.gov/30390734/

I took Niacinamide without the tetracycline and had improvement within two weeks.

Discuss with your doctor the benefits of supplementing with vitamins and minerals while on the gluten free diet which can have nutritional deficiencies.  Post pregnancy, our bodies can be insufficient in nutrients, vitamins and minerals because so much goes to the baby's growth and development. 

Correcting nutritional deficiencies is part of proper follow up care for Celiac people.  

Hope this helps!

[Beck123]

@knitty kitty this is so helpful. I was actually eating dairy free before and during my pregnancy and my DH was completely clear. I began to eat dairy again after my baby and my it came back.  I didn’t think of this before, so thank you. Also, are you saying that if you eat dairy that your DH will flare up or is that only when you eat gluten? 
 

I have a doctor’s appointment next month & I will be sure to ask about the vitamins. 
 

Thanks so much. 

3 hours ago, trents said:

Welcome to the forum, Beck123!

Are you certain the rash on the back of your neck is DH? Could it be something else? Have you had the rash biopsied to confirm it is DH? Could something in your regular "safe" food consumption list have had a formulation change so that it is no longer gluten-free?

I never had my rash biopsied, but my doctor said that it was. I’ve been extra careful and I’ve been writing down what I eat everyday to see if it’s something that I’m eating. Thank for your help. 

[Beck123]

3 hours ago, Scott Adams said:

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

Thank you! I don’t eat many of the foods you listed, but apparently dairy is night in iodine also. I will try cutting it out and see if it helps. Thanks!

[knitty kitty]

@Beck123,

Yes, if I eat dairy even without gluten, I will get DH outbreaks.

This article might be helpful....

Mucosal reactivity to cow's milk protein in coeliac disease

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

I also get eczema from dairy.  So I'm a flaky, bumpy, itchy mess if I consume dairy.

[Rogol72]

I've had DH a long time, diagnosed by skin biopsy. I can attest to everything that's been said about DH and the dairy/iodine connection. In addition to flaring DH, dairy makes me really tired and knocks me out. It's the casein protein, and/or the Microbial Transglutaminase food additive they put into dairy and other foods.

https://pubmed.ncbi.nlm.nih.gov/30543926/

https://www.frontiersin.org/articles/10.3389/fped.2018.00389/

It's worthwhile keeping a food and mood journal. 

[Rogol72]

I came across this webinar by the Canadian Celiac Association on DH if anyone is interested ...

https://www.youtube.com/watch?v=PAdmsNiyfOw

[pplewis3d]

On 8/30/2022 at 4:42 PM, Scott Adams said:

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

 

On 8/30/2022 at 4:42 PM, Scott Adams said:

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

 

..and some brands of eggs have additional iodine in them!!!

 

[trents]

55 minutes ago, pplewis3d said:

 

 

..and some brands of eggs have additional iodine in them!!!

 

How would they do that? Must be "chicken of the sea" hens. You're not talking about powdered eggs are you?

Edited September 3, 2022 by trents

[Beck123]

On 9/1/2022 at 11:46 AM, Rogol72 said:

I've had DH a long time, diagnosed by skin biopsy. I can attest to everything that's been said about DH and the dairy/iodine connection. In addition to flaring DH, dairy makes me really tired and knocks me out. It's the casein protein, and/or the Microbial Transglutaminase food additive they put into dairy and other foods.

https://pubmed.ncbi.nlm.nih.gov/30543926/

https://www.frontiersin.org/articles/10.3389/fped.2018.00389/

It's worthwhile keeping a food and mood journal. 

Today is day 3 of no dairy and the rash is almost clear. So thank you all so much!!!

[Rogol72]

Helpful info for reference ...

https://celiac.org/about-the-foundation/featured-news/2015/10/dermatitis-herpetiformis-and-iodine-exposure/