Newly diagnosed with DH

[statguymark]

Hello all, I'm recently diagnosed with Dermatitis Herpetiformis and I am also new to this website and these forums. I was diagnosed with celiac disease 5 years ago and my symptoms were very mild. I changed a few dietary choices and managed well. Several months ago, that nasty rash came on strong and I finally got to a dermatologist and got my DH diagnosis. I should be starting dapsone soon, depending on the lab tests.

I am now making many more dietary choices and striving to be gluten free (please wish me luck).

Can you share some tips or techniques for managing this mess? Perhaps some creams/lotions/hygiene choices?

And to everyone, thank you for sharing your stories. This is a fine message board and forum for sharing ideas. I hope to be helpful as well.

mark s

[trents]

Welcome to the forum, statguymark!

Your biggest challenge will be learning to eat gluten-free. There is a significant learning curve but eventually you develop sort of a sixth sense as to where gluten may be found in the food supply, medications, supplements, etc. Part of it is terminology and another part is avoiding cross contamination ("CC" as we call it). Eating out is the biggest sabotager of eating gluten free as you have not control over CC events happening back in the kitchen. In short, it's pretty easy to eliminate major sources of gluten so as to be eating a "lower gluten" diet but it's another thing to be truly gluten-free.

This might help: 

 

[Scott Adams]

Welcome to the forum!

Also keep in mind that iodine can also trigger DH outbreaks in some people, so you may need to avoid seafood, seaweed, and dairy/cheese as well, but not everyone with DH has an issue with iodine.

[KHL]

Hi statguymark, I suffered for years with DH before getting a proper diagnosis (despite going to multiple doctors and multiple dermatologists, but I digress). I found the following things helped me:

- keep your nails short! But remember it's mind over matter: it itches less if you don't scratch. 

- keep yourself cool: a fan at night, loose breathable clothing, cooler showers (this was a big one)

- the best cream was what doctors kept prescribing for me, but a general moisturizer (I liked CeraVe) can help tone down the itchy feeling overall

- if you live somewhere cold, avoid any itchy fabrics this winter

- focus on your gluten-free diet. It really works! I'd give up gluten every time for a life without DH and the other odd maladies and digestive issues that I no longer experience.  

Good luck! 

[Scott Adams]

I want to add that you can order topical lidocaine lotion that can help with the itch, and some people have reported than Ben-Gay cream helps.

[statguymark]

15 hours ago, KHL said:

Hi statguymark, I suffered for years with DH before getting a proper diagnosis (despite going to multiple doctors and multiple dermatologists, but I digress). I found the following things helped me:

- keep your nails short! But remember it's mind over matter: it itches less if you don't scratch. 

- keep yourself cool: a fan at night, loose breathable clothing, cooler showers (this was a big one)

- the best cream was what doctors kept prescribing for me, but a general moisturizer (I liked CeraVe) can help tone down the itchy feeling overall

- if you live somewhere cold, avoid any itchy fabrics this winter

- focus on your gluten-free diet. It really works! I'd give up gluten every time for a life without DH and the other odd maladies and digestive issues that I no longer experience.  

Good luck! 

Thanks very much. That's the type of advice I was seeking. Best of luck to you and everyone else.

statguymark

 

[Megawisdumb]

I was diagnosed with DH and have been gluten-free for 8 weeks now and still itch like crazy on legs, arms, back and head.  I got some dapsone gel 7.5% last week but it seems to just dry it out and not really help with the itch.  Frankly I haven't found much that helps.  I actually felt much better 8 weeks ago than I do now.  I used to run a few miles now I feel like an old man walking to the frig to get a snack.  My leg joints hurt.  Everyone keeps telling me you'll feel better soon...I'm waiting.  I'm strict gluten-free past 8 weeks just no relief.   I've tried Betamethasone Dipropionate and it cut the itch for 4-6 hours which is some relief i suspect.  Its alcohol based so it burns on the open sores. Triamcinolone Acetonide cream seems to suppress the itch longer but after a few tubs I could be wrong.  Like a horse twitch, the itch is starting to lose its attention to the joint pain so my point is enjoy the itch while it lasts as what ever chemical process is driving the joint pain starts to kick in you'll care less about the itch. 

[trents]

Welcome to the forum, Megawisdumb!

I'm thinking the oral form of Dapsone might be a better route. Just about everybody having DH on this forum who have used oral Dapsone have testified that it really helps.

[Megawisdumb]

Thanks Trents.  I saw the blood test requirements and leprosy usage on the oral Dapsone and thought the DH would go away on its own as I'm not big into RX's especially since I was having all the pains with the detox.  However, I had no idea I'd be at week 8 and still feeling better when I was hooked on pop-tarts and pizza.  I'll give it another month or so and then ask for some Dapsone oral if I'm still itching like a crackhead.   

[Scott Adams]

Have you tried lidocaine creams? Many over the counter ones are in the 5% range and have been helpful to others with DH.

As I understand it, Dapsone can have some serious long-term side-effects, and ultimately rooting out all gluten in your diet my be the best approach.

[statguymark]

12 hours ago, Scott Adams said:

Have you tried lidocaine creams? Many over the counter ones are in the 5% range and have been helpful to others with DH.

As I understand it, Dapsone can have some serious long-term side-effects, and ultimately rooting out all gluten in your diet my be the best approach.

Thank you Scott. It is clear to me that Dapsone is a mixed bag of good and bad. I am currently taking a 1/2 dose nearly every day with my doctor's guidance. I am continuing to strive for low or zero gluten in my diet and I will continue with the blood tests. 

My current struggle is to find a physician that has experience with DH and Dapsone. I am lucky that my digestive symptoms are quite small, but that rash can be really nasty.

[statguymark]

16 hours ago, Megawisdumb said:

I was diagnosed with DH and have been gluten-free for 8 weeks now and still itch like crazy on legs, arms, back and head.  I got some dapsone gel 7.5% last week but it seems to just dry it out and not really help with the itch.  Frankly I haven't found much that helps.  I actually felt much better 8 weeks ago than I do now.  I used to run a few miles now I feel like an old man walking to the frig to get a snack.  My leg joints hurt.  Everyone keeps telling me you'll feel better soon...I'm waiting.  I'm strict gluten-free past 8 weeks just no relief.   I've tried Betamethasone Dipropionate and it cut the itch for 4-6 hours which is some relief i suspect.  Its alcohol based so it burns on the open sores. Triamcinolone Acetonide cream seems to suppress the itch longer but after a few tubs I could be wrong.  Like a horse twitch, the itch is starting to lose its attention to the joint pain so my point is enjoy the itch while it lasts as what ever chemical process is driving the joint pain starts to kick in you'll care less about the itch. 

I'm sorry you are having that problem. It sounds awful. I'm curious about the Dapsone gel, vs a tablet. I'm not a doctor so my advice is completely amateur, but maybe switch to the tablet if the gel fails to help for another week. And be sure to do the blood tests.

 

[Megawisdumb]

My DH diag and celiac diag were just a few weeks a part.  I did not have any GI issues as well.  I just didn't want to introduce a strong RX into my body while I was dealing with the detox and certainly was not anticipating the joint pain.  Most of the stories report feeling better in a few days or weeks of gluten-free diet but don't go into detail on DH linger timelines.   The strict gluten-free was relatively easy for me as I am a protein guy anyway so changing my bread was the biggie.  I suspect they are extended for some like me.  The Dapsone gel or Aczone as its marketing name doesn't seem to help more than any OTC lotion.   Good luck with finding a physician, most that I have dealt with have limited scope of understanding.  

[Megawisdumb]

14 hours ago, Scott Adams said:

Have you tried lidocaine creams? Many over the counter ones are in the 5% range and have been helpful to others with DH.

As I understand it, Dapsone can have some serious long-term side-effects, and ultimately rooting out all gluten in your diet my be the best approach.

I have tried the lidocaine and it helps for a limited time.  I rooted all gluten from my diet on day 1 - 8 weeks ago but have no idea how long it takes to get the proteins out of my blood stream to stop the DH reaction.  I believe I have a better understanding of why some cultures did "blood letting" to cure the aliments - they probably had DH! 

[Rogol72]

There are other conditions that may cause itchy skin that can coexist with DH ... Iron Deficiency/Anemia and underactive Thyroid, these can be easily missed or overlooked.

https://www.usdermatologypartners.com/blog/getting-rid-of-itchy-skin-with-no-rash/

Iodine does exacerbate DH, I can attest to that. 

[Ambreen kelly]

Hi, I’ve had celiac disease for 15 years whilst I have learned to manage it well and on a complete gluten free diet I have suddenly developed a rash around my hair line , one side of my face could this be DH? 
 

[knitty kitty]

@Ambreen kelly,

I have DH.  I've found foods high in iodine will trigger my DH even though I'm gluten free.  

High iodine foods include iodized table salt, sea salt, seafood, especially crustaceans, and dairy products.  

Niacin Vitamin B3 will help DH heal faster.

Hope you feel better soon! 

[Ambreen kelly]

21 minutes ago, knitty kitty said:

@Ambreen kelly,

I have DH.  I've found foods high in iodine will trigger my DH even though I'm gluten free.  

High iodine foods include iodized table salt, sea salt, seafood, especially crustaceans, and dairy products.  

Niacin Vitamin B3 will help DH heal faster.

Hope you feel better soon! 

Thank you so much I will go and get some ….. any other supplements a must for celiac disease?

[knitty kitty]

We recommend a good B Complex, Vitamin D, and magnesium glycinate.  Also, extra Thiamine Vitamin B 1(in the form Benfotiamine) is beneficial in healing the intestinal damage.

[Ambreen kelly]

Perfect thank you so much really appreciate it . 

[PME]

4 hours ago, knitty kitty said:

We recommend a good B Complex, Vitamin D, and magnesium glycinate.  Also, extra Thiamine Vitamin B 1(in the form Benfotiamine) is beneficial in healing the intestinal damage.

Thanks, Knitty Kitty. Wondering...How did you determine the dosage of magnesium glycinate? What would you recommend as "good" B Complex and Vitamin D. (I'm currently taking D3 from Puritan's Pride 50 mcg rapid release liquid softgels but now noticing they contain corn oil, gelatin and soybean oil.) Also taking Nutricost Viatmin K2 MK-4,  100 MCG. Also just yesterday started adding a Tablespoon of nutritional yeast into my diet but not sure that's sufficient for Thiamine. How do you determine dosage of Benfotiamine? 

[trents]

50mcg of D3 is not near enough to address a deficiency. Try 5k-10k IU.

[PME]

Ok, thank you. I will up it again. I had been taking it twice a day (total of 4000 IUs), but I feared maybe it was the cause of constipation, so I cut back to 1X daily.

[trents]

I am not aware of high doses of D3 causing constipation issues.

[Wheatwacked]

The effective blood level of vitamin D is around 80 ng/ml which is equivalent to 200 nmol/L depending on the lab.  Because of a manufacturing error, the infant formula had 1000 times the maximum vitamin D for infants, in the UK in 1950s there was an epidemic of infant deaths attributed to calcification which The Royal College of Physicians and the British Pediatric Association concluded that the most likely causes were the unregulated overfortification of milk with vitamin D and/or excessive intakes of vitamin D from various foods. Although the Royal Academy of Physicians admitted that it did not have any direct evidence for this conclusion. As a result, legislation was instituted in Great Britain forbidding the fortification of any food or any product with vitamin D. This concern for vitamin D toxicity in children led to most of the world (including countries in Europe, the Middle East, Asia, Africa, and South America) banning vitamin D fortification of milk. Only the United States, Canada, and a few European countries continued to permit milk to be fortified with vitamin D. Vitamin D Is Not as Toxic as Was Once Thought

So the RDA was set at only enough to prevent rickets.  But what about all the rest of the bones and teeth?  Ever wonder why osteoporosis is found in just about every disease, including just growing old.  Or why the UK is infamous for rotting teeth?  They get virtually no vitamin D from sunlight in winter, and when there is enough sunlight in summer SPF 100 and cover up because of fear of skin cancer. There is a depression called Seasonal Effective Disorder caused by lack of sunlight and resultant low vitamin D. 42% US adults, up to 70% Canadians and 51% Irish have vitamin D insuffieciency.

 "Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL." https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

I've been taking 10,000 IU a day since 2014, getting tested for the last 3 years 4 times a year and have never had higher than 86 ng/ml.  It ended a very long depression after only 3 days at that dose. It also modulates the overactive autoimmune response.