Scalp DH? Or something else entirely?

[NoGlutensToday]

I used to get DH on my face and back. After going on the Fasano diet and being prescribed Dapsone I seem to have solved this.

However, I still get bumps on my scalp. Been getting them for years. They look a lot like DH and are sore and itchy. I asked my dermatologist about this and she said it could be part of my DH, or it could be something else entirely.

Personally, I don't understand how it could be DH if I'm not getting it elsewhere anymore, am on Dapsone, and eliminated the offending foods. I also use a shampoo that was recommended by my dermatologist.

I have some other issues related to my celiac - such as an apparent case of IBS that was only resolved by following the FODMAPS diet. My stomach is still healing and I still get rundown easy. So it is possible that these bumps are something else.

Any ideas what this might be? It gets worse if I wear a hat, which could be problematic since summer is around the corner.

[cyclinglady]

I do not have DH, but my advice would be to get a second opinion from a different dermatologist.  I hope you find answers!  ?

[squirmingitch]

If you got the bumps on your scalp for years prior to getting dh on your face & back, then it may be that the ones on your scalp will take longer to resolve HOWEVER, the Dapsone + diet should take care of that quickly. 

There are many skin issues celiacs get & many skin issues that are similar to dh so it really could be anything. 

[apprehensiveengineer]

My scalp's hella messed up. It's gotten a lot better though - I didn't seek a professional haircut for years because I've been too embarrassed about it. I still have a few lesions occasionally, but nothing super chronic (now I cut my own hair to save money lol).

There are also some other skin conditions that can cause lesions on the scalp though. That said, if your problems seem to correlate with gluten consumption, I'd guess it might be DH.

[NoGlutensToday]

Thank you all for sharing your insights. I really do appreciate this community.

When my scalp bumps(lesions?) were first presented to a doctor the belief was that I had foliculitis. I was prescribed some medication and some product to apply to the affected area. After treating this for a while and seeing no difference we started looking at other diagnoses.

It now strikes me that it very well could be foliculitis -- that's what it still looks like -- but that my body may not have responded to the medication because I still hadn't properly addressed my celiac (and IBS). Now that I'm addressing those issues perhaps it is worth taking another look at this as foliculitis.

I'm taking dapsone and my celiac symptoms seem to be in check. (No more DH on my face or back, which was an issue for years.)

One big problem with the foliculitis -- or whatever it is -- is that it gets aggravated by sweating and wearing hats. Summer is around the corner, and since I'm on dapsone I'm photosensitive. So I make sure to slather on SPF, but I still need some extra help in the form of a ballcap. But this kicks off the vicious circle of causing more painful bumps. So aggravating!

[cyclinglady]

 Can not wear a hat?  I limit my hat use by using a pretty umbrella when walking to pick up school children or watch a game.  Hubby will use a manly golf umbrella to keep cool or allow two people some shade.  Consider umbrellas (if your exercise is low impact)  to help off set when you need to wear a hat.  

[squirmingitch]

cyclinglady has great suggestions but sometimes you need both hands free. I often garden & need both hands free. Your baseball cap does not provide much air flow for cooling not to mention it doesn't give you much shade. My husband & I both wear this type straw hat. See all the vent holes in there? Nice air flow through there! Plus the brim all the way around provides additional sun protection & cooling. What we do is modify so it stays on in windy conditions. We get long leather shoelaces & tie them around the brim & pass through to the inside to hang down on each side. We take a decorative bead & thread it on so it's adjustable. Then we tie the ends together to keep the bead from falling off. These hats are really cheap too so we have some in the house & extra pairs in the car in case we get stuck somewhere needing protection.

https://www.northerntool.com/shop/tools/product_200518981_200518981

 

 

[Maddy1]

I have suspected DH on my scalp for years. I have never had these lesions anywhere else but my scalp. They become intensely itchy and ooze when I scratch and then a scab forms. I am Celiac and gluten-free for 10 years. I've always wondered if it has something to do with slight cross contamination from restaurants ect. My dermatologist doubted it was DH, without testing them, and gave me some cream that didn't work at all. 

[cyclinglady]

2 hours ago, Maddy1 said:

I have suspected DH on my scalp for years. I have never had these lesions anywhere else but my scalp. They become intensely itchy and ooze when I scratch and then a scab forms. I am Celiac and gluten-free for 10 years. I've always wondered if it has something to do with slight cross contamination from restaurants ect. My dermatologist doubted it was DH, without testing them, and gave me some cream that didn't work at all. 

@Maddy1 Consider browsing through the DH section of the forum if you suspect it might be the cause of your head rash and since you have celiac disease.  I think you will find that those with DH who have successfully treated their DH are SUPER careful.  It seems that 20 ppm threshold might be too much for them (it can be too much for many celiacs without DH too).  They avoid processed foods and do not eat out for the most part).  Drastic?  It works for them.  

Look at Squirmingitch’s and Apprehensive Engineer’s postings specifically.  They are active forum members and have been successful without medications, if I recall.

Consider trialing the Fasano diet for a month or so too.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

Following this diet will help you determine if you were getting too much hidden gluten exposure into your diet.  Also, make sure you are getting follow-up care:

https://celiac.org/about-celiac-disease/treatment-and-follow-up/adult-pediatric-follow-up-checklists/

I feel better avoiding processed foods and I never eat out except at dedicated gluten-free restaurants.  This works for me.  My last repeat endoscopy revealed a healed small intestine.  ?

[apprehensiveengineer]

11 hours ago, Maddy1 said:

I have suspected DH on my scalp for years. I have never had these lesions anywhere else but my scalp. They become intensely itchy and ooze when I scratch and then a scab forms. I am Celiac and gluten-free for 10 years. I've always wondered if it has something to do with slight cross contamination from restaurants ect. My dermatologist doubted it was DH, without testing them, and gave me some cream that didn't work at all. 

As @cyclinglady said, being super strict was necessary for me to make any headway against the rash. I have been gluten-free for 4 years, and I still get dinged every once in a while when I try a new brand/thing.

In my first year gluten-free, I was not very careful about CC with my gluten-eating roommates, and was fairly relaxed about what packaged foods I would buy - I didn't worry about stuff saying it was gluten-free unless it was something like bread, pasta etc. I ate out, but didn't really take many precautions aside from saying I was gluten-free. Many celiacs live like I did in that first year with apparent success. However, I was still getting sick quite regularly, and my rash didn't improve much. While I felt much better than I had before being gluten-free, I was aware that I could be doing much better, and so I slowly started doing all the "paranoid" things I'd laughed at when I first started out.

Basically, I did a Fasano-ish diet (I allowed myself a few things that I assumed would be low risk), then added stuff back in. This strategy helped me identify a few things that were causing issues. The whole thing is a bit infuriating/time consuming, but worth it IMHO.
Interestingly, I've actually found that a lot of my problems were from single ingredient, non-processed foods. One of the worst culprits turned out to be the store brand maple syrup I was eating intermittently (didn't always buy the same brand, didn't use maple syrup every day). Presumably, they might run the maple syrup on the same line as "table syrups" or molasses (could contain gluten)

Point here is that nothing is sacred, with the exceptions of fresh produce, eggs, plain/fresh meat, most plain dairy (ie. milk, butter, cheese). Keep track and look for patterns. It might be something really dumb that you don't think about.

[squirmingitch]

Those really dumb things are always the ones that get you. Sad but true.

[Levi]

Dg’d Dec. 2006 

Instead of blisters, gluten bumps in the scalp are a crusty small dried build up that when pulled off are orange in tint. Gluten flare ups on the head react same as any others that appear at pressure points of the body. They all have a 7-10 day cycle of completely healing as in disappearing, as long as one remains gluten-free… “put ins” and “put ons.”

** I would advise caution in not peeling some of the larger deeper gluten bumps from the head as you can easily peel your scalp layer and cause a sore along with possible infection. Learned from experience… 

 

GOD Bless us, Keep us, make us YOUR Saints 

 

[KnitterPup]

On 5/10/2019 at 9:49 AM, NoGlutensToday said:

Thank you all for sharing your insights. I really do appreciate this community.

When my scalp bumps(lesions?) were first presented to a doctor the belief was that I had foliculitis. I was prescribed some medication and some product to apply to the affected area. After treating this for a while and seeing no difference we started looking at other diagnoses.

It now strikes me that it very well could be foliculitis -- that's what it still looks like -- but that my body may not have responded to the medication because I still hadn't properly addressed my celiac (and IBS). Now that I'm addressing those issues perhaps it is worth taking another look at this as foliculitis.

I'm taking dapsone and my celiac symptoms seem to be in check. (No more DH on my face or back, which was an issue for years.)

One big problem with the foliculitis -- or whatever it is -- is that it gets aggravated by sweating and wearing hats. Summer is around the corner, and since I'm on dapsone I'm photosensitive. So I make sure to slather on SPF, but I still need some extra help in the form of a ballcap. But this kicks off the vicious circle of causing more painful bumps. So aggravating!

 

On 5/4/2019 at 10:09 PM, NoGlutensToday said:

I used to get DH on my face and back. After going on the Fasano diet and being prescribed Dapsone I seem to have solved this.

However, I still get bumps on my scalp. Been getting them for years. They look a lot like DH and are sore and itchy. I asked my dermatologist about this and she said it could be part of my DH, or it could be something else entirely.

Personally, I don't understand how it could be DH if I'm not getting it elsewhere anymore, am on Dapsone, and eliminated the offending foods. I also use a shampoo that was recommended by my dermatologist.

I have some other issues related to my celiac - such as an apparent case of IBS that was only resolved by following the FODMAPS diet. My stomach is still healing and I still get rundown easy. So it is possible that these bumps are something else.

Any ideas what this might be? It gets worse if I wear a hat, which could be problematic since summer is around the corner.

I had DH too - have had problems with my scalp - itchy, red bumps all over. I have recently discovered (for me) this is a reaction caused by cane sugar (white sugar). I have substituted honey for sugar and have no more issues.

You could be reacting to the same, or some other grain, like corn, rice, etc. Sugar cane is a grass, just like wheat, rice, corn, millet, etc. I’ve removed all grains/grasses from my diet. Also milk products and night shades.

I'm on the AIP diet (Auto Immune Protocol). It’s an elimination diet - you remove from your diet anything known to man that can cause a problem. Stabilize yourself for a few months, then add food items one-by-one to see if there is any reaction.

The best source of information I’ve found about this diet is The Paleo Mom (https://www.thepaleomom.com/category/autoimmunity/). I highly recommend it.

[NoGlutensToday]

On 10/16/2019 at 7:22 AM, KnitterPup said:

 

I had DH too - have had problems with my scalp - itchy, red bumps all over. I have recently discovered (for me) this is a reaction caused by cane sugar (white sugar). I have substituted honey for sugar and have no more issues.

You could be reacting to the same, or some other grain, like corn, rice, etc. Sugar cane is a grass, just like wheat, rice, corn, millet, etc. I’ve removed all grains/grasses from my diet. Also milk products and night shades.

I'm on the AIP diet (Auto Immune Protocol). It’s an elimination diet - you remove from your diet anything known to man that can cause a problem. Stabilize yourself for a few months, then add food items one-by-one to see if there is any reaction.

The best source of information I’ve found about this diet is The Paleo Mom (https://www.thepaleomom.com/category/autoimmunity/). I highly recommend it.

I appreciate the response (from everybody!). It is so strange ... paying strict attention since May, I have noticed that I only get the bumps on my head a) after wearing hats and b) when I don't make sure to wash my head in the morning and night before bed. If I wash my head twice a day and don't wear a hat, I seem to be fine. Ignore that routine, and I tend to get some bumps.

The common denominator there seems to be sweat and (maybe) clogged follicles. Still not exactly sure what that means, but at least I know how to avoid it.

Still wish I could wear a hat without this problem popping up, so I continue trying to learn more about it.

[Jenna1028]

On 5/4/2019 at 10:09 PM, NoGlutensToday said:

Any ideas what this might be? It gets worse if I wear a hat, which could be problematic since summer is around the corner.

I get this, too. I don't know about you, but they are equal in appearance - meaning I get in the same sore/spot on both the right and left side of my head. One in particular I've had for over a year... I don't know if its related to the DH, but after all the research I've done, I'm wondering if they just don't heal because my immune system is run down... I also discovered that the shampoo and conditioner I've used for years has gluten in it, as well as aloe - which I am also allergic too. 

Also, when I work in the yard, or really do any activity that causes sweating, the problem is worse, more appear, and they itch like crazy!!  I know for a fact my DH is made worse/severely irritated by sweating or being in the sun. 

So I don't know for sure - but in my opinion - they're definitely related. 

 

 

[NoGlutensToday]

If you can find it, consider Adasept for washing your face/hair. My dermatologist recommended it and it doesn't have any irritants in it.

I don't find mine to be symmetrical -- that's definitely a symptom of DH -- but I suspect it is related to rundown immune systems. Hope you're eating healthy with lots of greens. (Fasano Diet made all the difference for me...I was not recovering for years until I got strict and followed it.)

Even more than the immune system, the link between sweating and irritation from having a hat rub against the skin is clear. If I don't wear a hat, I rarely get these bumps. If I wear a hat, I'm probably gonna get some. So odd, and I'm not really getting any answers from my doctors about it. (They give me some creams to apply to make the bump go away but have no answers about preventing them, except 'don't wear hats!')

 

[Jenna1028]

22 minutes ago, NoGlutensToday said:

If you can find it, consider Adasept for washing your face/hair. My dermatologist recommended it and it doesn't have any irritants in it.

I don't find mine to be symmetrical -- that's definitely a symptom of DH -- but I suspect it is related to rundown immune systems. Hope you're eating healthy with lots of greens. (Fasano Diet made all the difference for me...I was not recovering for years until I got strict and followed it.)

Even more than the immune system, the link between sweating and irritation from having a hat rub against the skin is clear. If I don't wear a hat, I rarely get these bumps. If I wear a hat, I'm probably gonna get some. So odd, and I'm not really getting any answers from my doctors about it. (They give me some creams to apply to make the bump go away but have no answers about preventing them, except 'don't wear hats!')

 

I'll look into the diet!  I currently have a major DH rash - the worst of my life!  So I'm trying everything.  I only recently realized this is DH. I've seen so many doctors over the years and no one ever figured it out. (Which seems to be the norm around here). So frustrating. 

So one thing worth mentioning - I was a landscape designer for years. I live in the south, where its hot, and people sweat 10 months out of the year.  Because of this, I always assumed the rash was related to heat.

My wheat allergy was discovered 15 years ago when I had a horrible reaction to a sunburn. I looked like I had the measles - it was awful. But also, it was only focused on my stomach, and only on the burn spot - no where else. At that point, the doctor tested me for allergies because, in her words, "your body's immune system is so weak that you cannot even fight off a sunburn."  So she did an allergy panel and I discover that I was allergic to wheat, eggs, sesame seeds, shellfish, and on and on. I feel that it's at this point that I should've been tested for Celiac, but nope, never occurred to the doctor, and I had never heard of celiac. 

Anyway, long story short, heat has always further irritated the already excising rash. (Unless I take a scalding hot shower which scratches the itch/rash so deep, its euphoric). And because my immune system is so low, I have other weird things happen - like the sunburn. 

I don't know if you have medical marijuana where you live, but I'm trying CBD oil as of this morning, and it seems to really help the itch. I don't know if this is an option for you, but maybe it would help. 

Seems like one thing is for certain, people with celiac have weird symptoms, and only through boards and groups like this will we see the similarities and find a solution. 

❤️