Getting Glutened vs. Getting "Iodined"

[Alaskaguy]

Hello All,

I have a question (don't I always?) for those with dermatitis herpetiformis who have longtime experience with the gluten-free diet.

How can you tell --- or CAN you tell at all --- between having a stray reaction to gluten vs. having a reaction due to having consumed a high (or a relatively high) amount of iodine, which we know does not cause but can aggravate DH?  Are the reactions the same, and do they last a similar length of time?

I'm just wondering how one can distinguish between reacting to gluten vs. reacting to iodine, particularly after having been on a gluten-free diet for a year or more.

As a secondary question here, just how long might one expect to continue having DH reactions to high levels of consumed iodine after going on a gluten-free diet?  I get the feeling that it is on the order of years, or even indefinitely, which is a depressing prospect to me.  It's bad enough to have had to give up so many gluten-related foods (real, deep-dish pizza, I miss you!), but to face having to permanently or indefinitely give up seafood, yogurt, asparagus, milk and many other non-gluten-related foods is a real kick in the gut (no pun intended).

[squirmingitch]

You're asking some pretty impossible questions there AG. I can't tell the difference except if it's a glutting, then there will be some (for me) GI distress & an under eye tic on my right side & snoring for starters but these things come a couple-3 days after the fact. So right off the bat, I can't tell just by the rash. If days go by & I only have the rash, then I know it's iodine related. 

Everyone is an individual. Remember that. MOST people do not have this go on for years AG, MOST, the vast majority, are fine in months to a year. You keep going like this & you're going to make yourself sick. You're stressing. Stress can make the rash flare. Stress can make the rash flare just like ODing on iodine. Chill out some friend. OK? 

Don't get me wrong. I understand the need to know what you're up against, I understand research, but one can overdo it & make yourself crazy. I've been there. I am only speaking in an effort to help. 

[Alaskaguy]

33 minutes ago, squirmingitch said:

You're asking some pretty impossible questions there AG. I can't tell the difference except if it's a glutting, then there will be some (for me) GI distress & an under eye tic on my right side & snoring for starters but these things come a couple-3 days after the fact. So right off the bat, I can't tell just by the rash. If days go by & I only have the rash, then I know it's iodine related. 

Everyone is an individual. Remember that. MOST people do not have this go on for years AG, MOST, the vast majority, are fine in months to a year. You keep going like this & you're going to make yourself sick. You're stressing. Stress can make the rash flare. Stress can make the rash flare just like ODing on iodine. Chill out some friend. OK? 

Don't get me wrong. I understand the need to know what you're up against, I understand research, but one can overdo it & make yourself crazy. I've been there. I am only speaking in an effort to help. 

Thanks for your response, Squirmingitch, but I have to almost laugh, as at this point I am not really stressing over these questions at all --- just curious.  I have always been an insatiable question-asker, so please don't take my frequent questions as a sign of my obsessing over celiac disease or DH.  Yeah, admittedly I was rather stressed out for a couple of days two weeks  ago or so, but I am significantly settled down now, even while negotiating the nutritional maze of trying to manage two different elimination diets simultaneously.

And actually, I am even less stressed than I might have been a few days ago, as after doing my nutritional analysis of my diet this week, I can see there were going to be a few gaps in my nutrition on the Fasano + Low Iodine Diet, which however are relatively easily filled, and I have already taken steps to fill them (I've never been in a position before where my only practical protein intake is limited to meat, for example). .  But rather than worrying over those few inadequate but supplement-able nutrients, I was in fact rather pleased that my nutritional intake is as good as it is on such a limited diet, which is very reassuring to know. 

[ravenwoodglass]

My understanding is that the iodine doesn't cause a DH flare. It somehow keeps the antibodies from being removed from the skin. So if you are consuming gluten or getting CCed there are more antibodies to react which makes the rash more extensive. Once those antibodies have cleared gluten will still cause a DH outbreak but it will be much, much more mild.  You might just get one or two small lesions that resolve quickly instead of a big patch of them that are slow to heal.  You have to be very strict with gluten, of course, but be wary of completely cutting out all iodine as it is a needed nutrient. After you have been lesion free for a couple months do add it back in.

[squirmingitch]

Point taken AG. It can be difficult to tell in text as opposed to getting tone of voice, body language etc....

[AmberJ]

9 hours ago, Alaskaguy said:

Hello All,

I have a question (don't I always?) for those with dermatitis herpetiformis who have longtime experience with the gluten-free diet.

How can you tell --- or CAN you tell at all --- between having a stray reaction to gluten vs. having a reaction due to having consumed a high (or a relatively high) amount of iodine, which we know does not cause but can aggravate DH?  Are the reactions the same, and do they last a similar length of time?

I'm just wondering how one can distinguish between reacting to gluten vs. reacting to iodine, particularly after having been on a gluten-free diet for a year or more.

As a secondary question here, just how long might one expect to continue having DH reactions to high levels of consumed iodine after going on a gluten-free diet?  I get the feeling that it is on the order of years, or even indefinitely, which is a depressing prospect to me.  It's bad enough to have had to give up so many gluten-related foods (real, deep-dish pizza, I miss you!), but to face having to permanently or indefinitely give up seafood, yogurt, asparagus, milk and many other non-gluten-related foods is a real kick in the gut (no pun intended).

OMG I’ve having the same issue with dairy, sugars, even natural sugars like fruits! I’m following this thread. I really thought I was the only one! Thanks for asking it. My dr says I just need to go a good 6 months gluten/sugar/dairy free to “reset my system” and it should help. We’ll see.

Good luck to you sir!

 

AJ

[squirmingitch]

2 hours ago, ravenwoodglass said:

My understanding is that the iodine doesn't cause a DH flare. It somehow keeps the antibodies from being removed from the skin.

My understanding is not this. My understanding is that the antibodies are there, under the skin and iodine can aggravate the antibodies. The antibodies sit there under the skin, sort of like dormant plants in winter, if iodine intake is high enough (depending on the individual & the # of antibodies remaining under the skin) then it "triggers" the rash to flare.

[apprehensiveengineer]

For what it's worth, I've noticed that if it's just iodine I will not get any other symptoms. In addition to the rash, I typically get GI symptoms, fatigue, and sometimes joint swelling when I ingest gluten.

I don't typically eat seafood or stuff with lots of iodized salt, but sometimes I do on special occasions knowing that there will be some relatively minor consequences. Typically this is because I am traveling - canned tuna, salty snacks, jerky etc. are often the only nutritionally balanced things available that I am sure are safe.

An interesting question is whether or not the flare-up is causing a clinically worrisome amount of cellular damage (ie. potentially risking cancer, other AI diseases). I'd guess that on some level it is bad, but probably less bad than eating gluten. It does seem that increased iodine intake can increase your risk of Hashimoto's, which is a disease that people with DH seem to be more at risk for than regular celiacs. The pathway for this isn't clear though... but on the off-chance, I try to avoid ingesting iodine in amounts that causes a noticeable flair unless it is truly unavoidable as I have several close relatives who have Hashimoto's.

[Alaskaguy]

11 hours ago, ravenwoodglass said:

My understanding is that the iodine doesn't cause a DH flare. It somehow keeps the antibodies from being removed from the skin. So if you are consuming gluten or getting CCed there are more antibodies to react which makes the rash more extensive. Once those antibodies have cleared gluten will still cause a DH outbreak but it will be much, much more mild.  You might just get one or two small lesions that resolve quickly instead of a big patch of them that are slow to heal.  You have to be very strict with gluten, of course, but be wary of completely cutting out all iodine as it is a needed nutrient. After you have been lesion free for a couple months do add it back in.

Ravenwood, that is a very good point you bring up, and it is for precisely that reason why I asked my original questions.  What you describe is basically exactly what I have been experiencing over the past few months --- repeated small and usually individual pustules/bumps, rather than the wholesale rafts of them that I routinely had before going gluten-free.  Also, those itchy bumps/pustules that I have been experiencing more recently have almost all been quite quick to heal, often in well less than 24 hours, and rarely if ever more than 48 hours, unlike those I had while still eating gluten foods, which could and usually did last for weeks or months.

So it naturally makes me wonder, have those outbreaks that I have experienced within the past few months been due to ongoing and inadvertent gluten consumption via cross-contamination, unchecked and detrimentally high iodine intake, or just the ongoing process of my skin still reacting to those gluten-related antibodies that had built up in it while I was eating gluten foods?  Or maybe some combination of all three factors?

[Alaskaguy]

10 hours ago, AmberJ said:

OMG I’ve having the same issue with dairy, sugars, even natural sugars like fruits! I’m following this thread. I really thought I was the only one! Thanks for asking it. My dr says I just need to go a good 6 months gluten/sugar/dairy free to “reset my system” and it should help. We’ll see.

Good luck to you sir!

 

AJ

Thank you Amber!  I will do my best to keep the board informed of my progress, not because I am that important or special in any way, but simply as potentially useful information for the many others who read those posts even if they do not make their own, or for those who might read these threads in the future.

[Alaskaguy]

3 hours ago, apprehensiveengineer said:

For what it's worth, I've noticed that if it's just iodine I will not get any other symptoms. In addition to the rash, I typically get GI symptoms, fatigue, and sometimes joint swelling when I ingest gluten.

Thanks for your response, ApEng. 

Can you remind me again, how long have you been on the gluten-free diet?  I'm just curious to know how long it's been, since you are apparently still having adverse reactions to high iodine intake.  Do you feel that those iodine-related skin reactions are 'tapering off' over time for you?

Unlike you (and most others here), I no longer have any celiac disease-related GI symptoms.  Although in retrospect I did have such symptoms for most of my life (constant C, cramping and discomfort in the context of bowel movements), they were never as extreme as many others with celiac disease suffer, and for that matter I never even connected them to celiac disease until those symptoms quickly went away while on the gluten-free diet.

[apprehensiveengineer]

@Alaskaguy

Almost 4 years. The first 1.5 years or so I was not very careful about CC and got glutened a lot.

I'm in my late 20s now, but probably ate more gluten in the first 2 decades of my life than most people could dream of ingesting in 40 - British family (everything is served with bread, bread is a snackfood) + endurance athlete (high carb intake, >4000 calories a day total) + big-time beer enthusiast. I probably have more antibodies buried under my skin than would be expected.

I think my GI symptoms are a bit less severe than the typical celiac. Unless I get glutened very badly, I typically just get steatorrhea, or weird poops (and usually more frequent - >3x per day as opposed to 1-2). I get the classic diarrhea maybe 1-2 times per year. If I had no other symptoms, I might conclude that I almost never get glutened (and would perhaps try to pass off feeling terrible at "random" on other things)!

I am however, very sensitive - if I get a rash outbreak, it is almost always preceded by a "weird stomach day." Timing varies, but right now it seems to be about 2-3 days to onset, peak rash about 5 days. Sometimes the GI issues are so slight that I'm not sure... until the rash flares. I had chronic stomach issues as a kid/teen that would have me on the BRAT diet for months at a time... then fade away randomly. The rash appearing when I was ~21-22 is what made me realize there had to be something serious wrong with me.

 

 

 

[Alaskaguy]

Thanks for that information on your celiac disease symptoms, AppEng.  I take particular note of your observation that it takes 2 or 3 days before you see skin rash or skin symptoms from a glutening, and 5 days to peak rash.  I've never (to this point) been able to identify any given DH outbreak of my own with any particular food or meal, so that is good to know, even though my individual reactions and timing might well be different from your own.

[apprehensiveengineer]

@Alaskaguy

With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent drywall dust exposure at work (ugh), and then got glutened by a new food item that I introduced last weekend. The second time around, I was itchy/crusty/gross about a day later.

[slaphappy]

Oh no..I have this and just took a supplement with 100% of daily iodine.

[squirmingitch]

Hey Alaskaguy, how's it going?