DH and related complications

[Alaskaguy]

Hello all,

I am a newbie here, and this is my very first post.  So I hope that you can be patient with me as I try to explain my situation.

I have/had been having an increasing problem with an incredibly itchy rash for the past five or six years.  This came on so gradually that I can't even remember exactly when it started, as at first it was merely itching, although it slowly got progressively worse.  But after maybe a year or two of that, there started to appear odd 'bumps' and then rashes in the places where I had been getting itchy, and the itching only got worse.

A few things I noticed about these bumps and rashes was that they would seem to start or flare up suddenly (like in minutes), but fade away very slowly, over days or weeks.  The bumps started showing up in larger and larger groups or clusters, and the skin around and under these clusters started more and more to become red or purplish; this color would turn to purple-brownish after that particular clump of "bumps" subsided, but this color would often last, and only very slowly fade, for many weeks afterward.  I also noticed that most of the clusters of 'bumps', and itchy areas, would appear symmetrically on my body --- for example, if I had an itchy rash forming on the inside of my upper left arm, there would usually be one more or less simultaneously forming on the inside of my upper RIGHT arm as well.

After trying to just "live with it" for a couple of years, I started to increasingly use over the counter hydrocortisone cream on these rashes and itchy areas, along with diluted blue tansy essential oil, a noted natural anti-inflammatory.   Sometimes I would use both of those in combination.  That seemed to help with the itch, sometimes, but they did not seem to make the rashes and bumps go away.

Late last year (2017) and early this year, I noticed that the itching and rashes were not as bad as they had been at the same time of year last year and the year before.  After thinking about my diet over the previous two or three months, I realized that I had been eating almost no wheat products (pasta, bread, etc.), which I otherwise normally would have been.  So I really dug into some internet research, trying to find any link between dermatitis and wheat consumption, and BINGO, I ran across "dermatitis herpetiformis", which I had never heard of before.  When I read up on that condition, and looked at online photos of it, I had FINALLY found what looked and sounded like what I was experiencing.  But not having medical insurance, I never did have myself tested for celiac disease.

So, long story short, I started a rigorous gluten-free diet in late January, and quickly saw noticeable improvement in my skin condition.  However, while the situation is overall significantly improved, I have still had flare-ups in the condition while on the gluten-free diet.  One time was after eating a fish stew which contained dulse (a sea vegetable) twice on consecutive days, and I now understand that iodine can aggravate the DH even after going on a gluten-free diet.

My question here, for those of you willing to help me, would be what OTHER triggers should I be looking out for in regards to DH?  I now know about iodine being one, but somewhere I think I had read about sulfites being another, although I cannot now find that reference.  Elsewhere I have read about alcohol being implicated, or MSG, or other substances found in food.  But I cannot seem to find a simple and definitive list of such DH 'triggers'.  Nor is there any clear indications of just how long I might expect the DH to linger in my skin after going gluten-free, or have to worry about consuming these 'trigger' foods and substances.

Thank you so much folks, and I am really glad that I have discovered this forum!

[Alaskaguy]

Oh, one thing that I REALLY wanted to ask you all about, was the circumstances of my worst rash/bumps/itching outbreak since going gluten-free (or even for several months before going gluten-free).

Back in early April, I started physical therapy for a spine injury that I suffered in a bad fall in early March (yes, it has NOT been a good year for me!).  Most of this physical therapy was taking place in an indoor pool.  Well, knowing something of the chemistry of pool treatments, I was aware that indoor pools, in contrast to outdoor pools, typically use a mixture of iodates, iodides and iodine (elemental) to sterilize their water, rather than chlorine and chlorates.  And sure enough, after three or four sessions, I started getting the itching, then the bumps, then the full-blown rashes that I had had before.  By the seventh session, it was getting pretty bad, and after the eighth session I told them "No more!" --- I just couldn't take it anymore.  And once removing myself from that pool environment, all those symptoms started abating, but slowly, taking several weeks to mostly subside (I am not sure that they have fully yet).

Has anyone else here read, heard of, or experienced flare-ups of DH in regards to using INDOOR pools?  I should stress that this would probably be a problem ONLY with indoor pools or hot tubs, as outdoor pools use an entirely different (chlorine-based) system of chemicals for sterilization and algae control.

[cyclinglady]

I do not have DH, but members report that they must be super strict with the gluten-free diet.  Most have determined they must avoid even most processed gluten-free foods, as 20 ppm seems to be too much for them.  Read through the DH section for tips for triggering DH.  

[cyclinglady]

Wow!  My gym pool is indoors and they still use chlorine to keep their pool clean (like our school pool).   I never though a “salt” pool would aggravate  DH, but why not?  

[Alaskaguy]

9 minutes ago, cyclinglady said:

Wow!  My gym pool is indoors and they still use chlorine to keep their pool clean (like our school pool).   I never though a “salt” pool would aggravate  DH, but why not?  

I know that the implication of the pool chemicals in my bad flare-up might sound a little odd, and maybe it is, as I do not know if the iodine has to actually be INGESTED to cause the skin reaction, or if it could just be absorbed through the skin directly.  Chemically, what happened would seem to make sense to me, if the iodine was absobed through my skin over multiple uses of the (indoor) pool.  But I had never read of anything like this happening to anyone else with DH, or who suspected that they had DH.

[apprehensiveengineer]

I've noticed that going in the ocean for prolonged periods makes my skin worse. This seemed to happen regardless of whether I submerged my head. No idea if this is to do with topical iodine exposure or not, but it seems that topical iodine can induce a flare, as it can be used for diagnostic purposes: https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2133.1980.tb07250.x

Most pools use some chlorine or bromine salts to disinfect the pool water, none of which seem to be iodine-based, as far as I am aware.

I'd not heard of using iodine in pools, but it seems that it is a thing, which is kind of cool - it eliminates the harmful VOCs that are created when chlorine/bromine react with the nitrogenous compounds that come off of our bodies. Unfortunate if you have DH, I guess though. I think you just had bad luck with this pool - I was a lifeguard/competitive swimmer for a long time, and I've never encountered a public pool that wasn't primarily chlorine disinfected.

 

[Alaskaguy]

13 hours ago, apprehensiveengineer said:

I've noticed that going in the ocean for prolonged periods makes my skin worse. This seemed to happen regardless of whether I submerged my head. No idea if this is to do with topical iodine exposure or not, but it seems that topical iodine can induce a flare, as it can be used for diagnostic purposes: https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2133.1980.tb07250.x

Most pools use some chlorine or bromine salts to disinfect the pool water, none of which seem to be iodine-based, as far as I am aware.

I'd not heard of using iodine in pools, but it seems that it is a thing, which is kind of cool - it eliminates the harmful VOCs that are created when chlorine/bromine react with the nitrogenous compounds that come off of our bodies. Unfortunate if you have DH, I guess though. I think you just had bad luck with this pool - I was a lifeguard/competitive swimmer for a long time, and I've never encountered a public pool that wasn't primarily chlorine disinfected.

 

Thank you, all, especially AE directly above, for that information.

You know, I never knew or suspected that any kind of swimming pool used anything other than chlorine, or some form of chlorine anyway, to disinfect their water.  But apparently iodine/iodates work very well, better in fact than chlorine, but they do nothing to keep down the algae that is also a big problem in swimming pools, so they are not used in OUTDOOR swimming pools, i.e., those exposed to the sun.  But this is not a problem, of course, in INDOOR swimming pools, which is why I stressed the "indoor" aspect in my posts above. 

But aside from discovering that at least some indoor pools used iodine/iodates to disinfect their water, I could find no online references to anyone with dermatitis herpetiformis being bothered or having their condition aggravated by swimming in such pools.  And if I didn't mention it before, maybe I should add that this was not a swimming pool, per se, but a physical therapy pool.

[squirmingitch]

OOF! Where to start with you......

OK, let's see, triggers & aggravators..... NSAID's but if you MUST take something, it seems Tylenol is the least offender. Go to thyca.org for a low iodine diet (leave off the gluten foods too!), steroids --- generally a monstrous rash backlash after quitting them. Do NOT eat out - it isn't worth the risk and if you do it anyway then you're asking for the suffering you will get. On the iodine, you don't have to be low iodine forever -- it's just to get the rash to calm down. Stress. Gluten of course & I mean the teeniest, tiniest bit! Heat & humidity & sweat. 

Do not kiss any gluten eaters until they have done a very good job of brushing their teeth!!!!

Feed your pets gluten-free pet food. Why? Because pets lick stuff, themselves, us, whatever. We touch & then get it in our mouths if we goof & don't wash. Or the dog gets exuberant & hauls off & gives you big sloppy, wet kiss when you're laughing & OOPS!

The rash can & will flare whether you're eating gluten free or not UNTIL all the antibodies are out from under the skin. How long does that take? We are all individuals & it can take weeks or years or years & years.

As to topical iodine & the patch test to dx. I did a boatload of research on that years ago & it's bunk. There have been medical studies done on that & it has been determined the iodine on the skin patch test doesn't indicate anything as far a dh goes. You can believe me or research it yourself. If you dig on this dh forum, you can find where I laid it all out some years ago - around 2011 or 2012. the test referenced in the earlier posted link is from 1980. Doesn't make it invalid but no testing since backs up the data.

As far as pools go.... I have read where people report problems after being in pools. Seems from what I read, most all were talking about outdoor pools. I have also read people saying that about the ocean or salt water swimming. I've not found any studies that addressed that issue. I have read people with dh also reporting that these things did not bother them or make the rash flare. I suspect but can't prove, it's an individual thing & quite possibly, the chlorine or iodine or salt water dries out the skin which would tend to make the skin more "gitzy" & apt to "act out". I could easily see that happening.

Try this for a while:

https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-13-40

 

 

 

[apprehensiveengineer]

21 hours ago, Alaskaguy said:

And if I didn't mention it before, maybe I should add that this was not a swimming pool, per se, but a physical therapy pool.

That makes sense. Smaller pools (eg. therapy pools, hot tubs) are more easily thrown off-balance chemically because of the lower volume of water and warmer pool temperature. Typically, they require higher concentrations of chlorine, so I can see why using iodine (which is less irritating to skin/eyes/airways if used in high concentrations than chlorine) in such a pool would be done. Chlorine/bromine (or rather, the gases they form when reacting with stuff) is very nasty and causes occupational asthma in lifeguards and swimmers.

 

[squirmingitch]

A couple things I forgot to mention earlier...... pressure points ~~~ dh likes to hit pressure points. that can be clothing seams, bras in general, where your socks hug your calves, stuff like that. Loose clothing helps!!!! Going barefoot helps if you're in a climate where you can do that. DH also likes to hit scars/scar tissue. I have a hysterectomy scar that got strafed time & time & time again. Other various & sundry scars I've gotten over a lifetime got hit often as well. Also, there was a good period of time there where I could not wear a band aid without my skin reacting like mad. It would get all red, puffy & itchy/burning where the band aid was & many times would then develop dh in that area. 

I think part of it is that your skin is just so ridiculously hypersensitive & those antibodies are just rearing to go attack anything at all. 

Just be aware of those kinds of things is all. I took my earrings out & didn't wear them for a couple years b/c they were even irritating me. 

[disgruntledceliac]

I just wanted to add that the Fasano diet has made a world of difference for me. It is limiting in its options for 3-6 months, but after 2 months my DH has gone away for the first time in a decade. Look into it and see if it works for you.

[Alaskaguy]

Hello All,

While I have posted little if at all in the past several months, I thought I'd give you all an update on my situation since I started this thread seven months ago.

I have adhered to a strict gluten-free diet (or as strict as I can possibly make it) for almost 13 months now, without a single case of "cheating" (was never even tempted!).  My dermatitis herpetiformis has gotten noticeably better in the last year (most significantly just in the past two or three months), to the point that I have many days now with little or no itching, and only occasionally have any rash/pustule outbreaks, which however are much smaller than in the past, and which respond very promptly to topical hydrocortisone, or if not so treated, typically disappear within two or three days anyway.

I also cut out all milk and dairy back in September, and at the same time stopped eating my certified gluten-free oats, just to see if that might not help speed the process of healing.

However, just after my post last June, I had an increasingly bad outbreak on many of my usual DH locations, which proceeded to turn into large fluid-filled blisters, VERY similar to the poison ivy rashes that I used to get years ago when I lived in Michigan (fortunately, Alaska is not cursed with that plant); this was the first time since first experiencing DH six or seven years ago that I had had this kind of reaction.  BUT, it did coincide with a binge of mango-eating that I indulged in back in June of last year, which also caused a very persistent but different case of dermatitis on my hands, exactly where I would hold the mangoes while peeling them.

Has anyone else ever experienced a flare-up on their DH from a completely gluten-free food such as mangoes?  I had eaten mangoes most of my life, and never had such a reaction before.  However, my mother developed an allergy to mangoes about 15 years ago, and mangoes are related to poison ivy, and from what I read are a common allergen.  It just seems weird that in addition to the obvious contact dermatitis they caused, that they would also aggravate the pre-existing DH on my back and upper arms.

Later, in December, I had a similar but less severe and shorter-term reaction, which I attributed to eating cashews every day for about a week.  Although I had never had any problems with eating any kind of nuts before, cashews are also related to mangoes, as it happens, and apparently are not an uncommon cause of allergic reactions as well.

Ironically, as I write this, I am itching moderately on my left torso, and see that I have a few small bumps/proto-pustules that are forming there.  But it is much, much less itchy than what I was having before going gluten-free, and I have been able to sleep through almost every night without waking up due to itchiness for most of the past three months.  So it seems like progress is being made, if slowlyl.