Suspected DH in my 2 year old son

[CharlotteG87]

Hi,

I wonder if I could ask some advice. My son has been struggling with his skin for almost a year. It started with blisters on his upper arms and in March, after eating durum wheat pasta, he developed an awful rash and blisters over most of his body (except his chest), worsening by the hour. I’m trying to upload photos - can anyone help me?! 
 

To cut a long story with many doctor appointments short, we cut out gluten and his skin has improved but with the occasional flare up. Nothing like as severe as the March episode. 
 

Doctors think he has chronic bullous disease of childhood but won’t do a biopsy to confirm. They are ADAMANT it isn’t diet related but everything I read about DH leads me back to it. Does anyone have experience of a child with DH? Any thoughts would be so gratefully received, his skin flared up again today, getting worse by the hour, and I can’t think how or why it’s happening unless he has somehow eaten gluten or something CC. 
 

thank you, Charlotte 

 

 

[trents]

Welcome to the forum, Charlotte! This not the total solution but I would make you aware that if he has DH then dietary iodine exacerbates it. Like in iodized table salt or food high in iodine. You an get a biopsy done by a dermatologist to check for DH during an active outbreak. DH is definitive for celiac disease.

[Scott Adams]

Yes, dairy and seafoods can cause DH flareups, and it would be a good idea for him to get tested for celiac disease, but since he's already gluten-free you can't, as he'd need to eat gluten daily for 6-8 weeks before the tests.

Can I ask why the doctors are so sure his issues are not diet-related?

[knitty kitty]

Have you tried keeping a food journal of what your son eats and when the rash flares up?

[CharlotteG87]

12 hours ago, trents said:

Welcome to the forum, Charlotte! This not the total solution but I would make you aware that if he has DH then dietary iodine exacerbates it. Like in iodized table salt or food high in iodine. You an get a biopsy done by a dermatologist to check for DH during an active outbreak. DH is definitive for celiac disease.

thanks so much for your reply, I didn't know about iodine. They won't do a biopsy as he won't sit still for a local anaesthetic and they say a general anaesthetic is too extreme...

9 hours ago, Scott Adams said:

Yes, dairy and seafoods can cause DH flareups, and it would be a good idea for him to get tested for celiac disease, but since he's already gluten-free you can't, as he'd need to eat gluten daily for 6-8 weeks before the tests.

Can I ask why the doctors are so sure his issues are not diet-related?

hi, thanks so much for your message. To be honest, I don't know - they are just completely dismissive of it being anything to do with diet. Even if it is CBDC, they won't entertain the idea that it could be a dietary trigger.

Can I ask, do you always find DH to be itchy? It's the only aspect of his condition which doesn't quite fit and I think perhaps why they insist he doesn't have it?

[CharlotteG87]

16 minutes ago, knitty kitty said:

Have you tried keeping a food journal of what your son eats and when the rash flares up?

hi, thanks for your message. No, I haven't yet but this is a good idea. I had cut out dairy, eggs, gluten and oats since March but we recently reintroduced dairy, eggs and oats. I will start a diary. Do you find you have a flare up immediately after eating gluten, or can there be a delay of days/hours? My son's skin was getting worse by the hour last night but he was at nursery the day before, so I'm wondering if he's somehow eaten something he shouldn't have... I am so careful with what he has at home, I know he didn't have gluten on the day his skin was getting worse...

 

 

[trents]

CBDC?

[Scott Adams]

7 hours ago, CharlotteG87 said:

thanks so much for your reply, I didn't know about iodine. They won't do a biopsy as he won't sit still for a local anaesthetic and they say a general anaesthetic is too extreme...

hi, thanks so much for your message. To be honest, I don't know - they are just completely dismissive of it being anything to do with diet. Even if it is CBDC, they won't entertain the idea that it could be a dietary trigger.

Can I ask, do you always find DH to be itchy? It's the only aspect of his condition which doesn't quite fit and I think perhaps why they insist he doesn't have it?

If they won't even look at a dietary cause you should change doctors. Clearly he's having symptoms that could be related to things he's eating, thus, they are failing as doctors if they are unwilling to consider this.

DH is normally very itchy, so it's possible it may not be DH, but a dermatologist would need to do a proper DH biopsy next to the blisters to determine this.

Around 9% of celiacs can't tolerate oats, and oats are often contaminated with wheat, so you may want to exclude them for a while.

[shadycharacter]

3 hours ago, trents said:

CBDC?

 

Found this definition, and the info that it may resemble DH:

Chronic blistering dermatosis of childhood (CBDC) [...] is a rare blistering skin disease characterized by the presence of tense bullae and the linear deposition of IgA at the dermal-epidermal junction of lesional and perilesional skin. The disease may resemble bullous impetigo, bullous erythema multiforme, dermatitis herpetiformis, or pemphigus. The treatment involves the use of either dapsone or sulfapyridine.

https://pubmed.ncbi.nlm.nih.gov/6342155/

[CharlotteG87]

22 hours ago, CharlotteG87 said:

Hi,

I wonder if I could ask some advice. My son has been struggling with his skin for almost a year. It started with blisters on his upper arms and in March, after eating durum wheat pasta, he developed an awful rash and blisters over most of his body (except his chest), worsening by the hour. I’m trying to upload photos - can anyone help me?! 
 

To cut a long story with many doctor appointments short, we cut out gluten and his skin has improved but with the occasional flare up. Nothing like as severe as the March episode. 
 

Doctors think he has chronic bullous disease of childhood but won’t do a biopsy to confirm. They are ADAMANT it isn’t diet related but everything I read about DH leads me back to it. Does anyone have experience of a child with DH? Any thoughts would be so gratefully received, his skin flared up again today, getting worse by the hour, and I can’t think how or why it’s happening unless he has somehow eaten gluten or something CC. 
 

thank you, Charlotte 

 

 

 Sorry, I couldn’t work out how to get logged in to reply! Yes they think it’s chronic bullous disease of childhood. But his spots don’t resemble the characteristic “ring” blisters so I’m not convinced by that. 

[trents]

24 minutes ago, CharlotteG87 said:

 Sorry, I couldn’t work out how to get logged in to reply! Yes they think it’s chronic bullous disease of childhood. But his spots don’t resemble the characteristic “ring” blisters so I’m not convinced by that. 

I'm relieved to here the acronym had nothing to do with cannabis!

[knitty kitty]

9 hours ago, CharlotteG87 said:

hi, thanks for your message. No, I haven't yet but this is a good idea. I had cut out dairy, eggs, gluten and oats since March but we recently reintroduced dairy, eggs and oats. I will start a diary. Do you find you have a flare up immediately after eating gluten, or can there be a delay of days/hours? My son's skin was getting worse by the hour last night but he was at nursery the day before, so I'm wondering if he's somehow eaten something he shouldn't have... I am so careful with what he has at home, I know he didn't have gluten on the day his skin was getting worse...

I can have a delay of a couple of days, but other times I can have an immediate reaction.  It comes from quantity and quality (some flours contain more gluten than others), and if I've been glutened recently before (level of antibodies). 

Daycare may use Play Doh, paste, and finger paints, (all may contain wheat) in addition to contaminated snacks. 

Genetic testing might show genes for Celiac.  There may be some over lap in HLA genes in both, but there have been cases where patients have had both.  

Your doctors are employed by you.  You are allowed to get a second opinion.  

Do you have pictures?  

P.S. Sometimes my rash is itchier than others.  Worst itchy is right before outbreaks appear.  Others are itchy constantly.  

Edited October 13, 2022 by knitty kitty
Add more information

[CharlotteG87]

33 minutes ago, knitty kitty said:

I can have a delay of a couple of days, but other times I can have an immediate reaction.  It comes from quantity and quality (some flours contain more gluten than others), and if I've been glutened recently before (level of antibodies). 

Daycare may use Play Doh, paste, and finger paints, (all may contain wheat) in addition to contaminated snacks. 

Genetic testing might show genes for Celiac.  There may be some over lap in HLA genes in both, but there have been cases where patients have had both.  

Your doctors are employed by you.  You are allowed to get a second opinion.  

Do you have pictures?  

P.S. Sometimes my rash is itchier than others.  Worst itchy is right before outbreaks appear.  Others are itchy constantly.  

Thank you, this is so helpful. I have lots of photos but I can’t work out how to upload them?

[trents]

12 minutes ago, CharlotteG87 said:

Thank you, this is so helpful. I have lots of photos but I can’t work out how to upload them?

To upload photos, click on the three dots in the upper right corner of a new post window and then click on "Edit" and then you will see the tool for attaching photos (or "drag and drop") at the bottom of the Edit window. The trick is you only have a short time windows to do any kind of editing before that feature becomes inactive. So, before you start the edit process, know where your photos are stored and have that ready so you don't waste time fumbling around to find them.

[knitty kitty]

Not my forte, but maybe someone more fluent in computer stuff can help.

And there we go! 

Thanks, @trents!

Edited October 13, 2022 by knitty kitty
Typo

[Scott Adams]

There may be an easier way...at least on a PC. If you right click on any photo and select "copy image," then click within a new post where you want the picture to appear and right click again and select paste.

On an iPhone if you hold down your finger on an image for a while it will give you options to do the same.

 

[Posterboy]

Charlotte,

You might want to have his Vitamin D levels checked it is often low in autoimmune bullous disease.

Here is an article about it....

Entitled "Vitamin D in autoimmune bullous disease"

https://pubmed.ncbi.nlm.nih.gov/32049468/

You should also start him on a B-Complex with meals.....(it is the easiest way to get him started on his road back to to health).....and I would reccommend a high quality Magnesium as well like Magnesium Citrate or Magnsesium glcyinate sparing that (if that is difficult to do)......start bathing him in some Epsom Salts (they have a form of Magnesium) that can be absorbed through the skin.......you can use a wash clothe to give him a "Pan Bath" letting him gently absorb the Magnesium through his skin......and Magnesium is also important for a healhty immune system......

It is really the B-3 he needs here (in the B-Complex)  (Niacin deficiency is common in many kinds of skin diseases)) .......but when you are low in B-3......you are also low in your other B-Vitamins as well.

Here is some research that will help you....

Entitled "Successful adjuvant treatment of severe bullous pemphigoid by tryptophan immunoadsorption"

https://pubmed.ncbi.nlm.nih.gov/16045683/

The Tryptophan helps because the body uses it to replace/build the missing Vitamin B3 that is leading to his skin issues.

This article will explain how and why Niacin and/or Niacinamide (the naturally non-flushing kind of Niacin) can cause many dermatology issues....up to an including autoimmune Bullous diseases...

Entitled "Nicotinamide: Mechanism of action and indications in dermatology"

Note: Nicotinamide and Niacinamide is the same substance just spelled differently.....one is the British spelling one is the American spelling....

https://ijdvl.com/nicotinamide-mechanism-of-action-and-indications-in-dermatology/

Here is a recent article about your sons conditions where even in the dermatology field......change is slow and difficult.

Entitled T"etracyclines and Niacinamide as Steroid Sparing Agents in the Treatment of Autoimmune Bullous
Diseases: A Short Review"

https://www.jscimedcentral.com/Dermatology/dermatology-8-1134.pdf

Where despite good current research about how Niacinamide helps Bulluos diseases.....experts are sadly slow to reccommend Vitamins......because if you took them......you won't need the Steroids and doctor's who are using the Steroids to treat the Symptom's......and not the cause(s) ........the Vitamin deficency and/or Vitamin deficiencies leading to a disordered immune response.

I wrote a Posterboy blog post of how and why this happens in Lupus it might help you to read it....

Good luck on your continued journey and I wish your son his best health soon!

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[Beverage]

I can't tolerate oats unless Purity Protocol. Try completely cutting out the oats for awhile.