Does anyone know how accurate the iodine patch test is?

[Breezy1]

I’ve been researching a lot lately and came across the iodine patch test, and how it may react to someone with DH. 

Ive been frustrated with blood tests as the only one I seem to be able to get here in Canada is the ttg iga which I tested negative for. I’m going to ask my doctor if there’s any way to get the other tests done(even if I have to pay) at my next appointment but I’m waiting on an ultrasound to check my gallbladder first. 

So I decided to try the iodine patch test. I put some on a bandaid and put it on clear skin next to an active breakout. Within 10 minutes it was burning a lot, by 15 minutes it was burning so much I had to go check it, well the whole area around the bandaid was red, all the way to my active rash which was now more inflamed! So I decided to take the bandaid off immeiditely and tried washing the iodine off with some water. The area is still burning, and the skin the iodine was on is very red and raised (no new blisters yet) and the surrounding are with my current rash is very very red and angry looking! 

Does this sound like a normal reaction for a person with DH? I know no one here can diagnose me and id have to see a dermatologist (which I plan to ask to be referred to one at my next appointment) but I just wanted to see if anyone has tried this and had a similar reaction? Or knows anything about it? 

Thanks you!!

[Posterboy]

Breezy1,

I can't answer your Iodine patch question.  Maybe squirmingitch will come on soon and be able to answer it.  

But if you are having DH problems see this recent thread.  If you  haven't read it might help  you treat it with off label antibiotics.

It explains how both Doxycycline and Tetracycline has been effectively used in the treatment of DH.  And the doctor's are not yet using it widespread in a clinical setting for DH sufferers.

 https://www.celiac.com/forums/topic/122255-the-more-im-in-the-worse-it-gets/?tab=comments#comment-995545

I hope this is helpful.  But it is not medical advice.

Posterboy,

 

 

[cyclinglady]

36 minutes ago, Posterboy said:

Breezy1,

I can't answer your Iodine patch question.  Maybe squirmingitch will come on soon and be able to answer it.  

But if you are having DH problems see this recent thread.  If you  haven't read it might help  you treat it with off label antibiotics.

It explains how both Doxycycline and Tetracycline has been effectively used in the treatment of DH.  And the doctor's are not yet using it widespread in a clinical setting for DH sufferers.

https://www.celiac.com/forums/topic/122255-the-more-im-in-the-worse-it-gets/?tab=comments#comment-995545

I hope this is helpful.  But it is not medical advice.

Posterboy,

 

 

There could be a reason doctors are no longer trying to use antibiotics to relieve DH or Rosacea.  There are some very serious side effects to taking these drugs long term.  Why even take the risk when dietary changes can provide relief and remission?  

I can speak from personal experience.  I have Rosacea and was on tetracycline for a few years back in the early 90’s (most our your links were published back then).    I was assured that it would do no harm.  My doctors were wrong.  I think it was the initial cause or trigger of my autoimmune issues.  

Oddly enough, dietary changes prevent a Rosacea flare.  It will occur if I consume certain foods (e.g. red wine, garlic).  Otherwise, I actually get complements on my clear complexion, so my diet works and most likely calming my immune responses (e.g. inflammation) helps.  

I would NEVER recommend long term antibiotics like the medical community was doing more than 20 years ago.  My hubby had recent major surgery.  He never was given antibiotics ever!  They monitored for infection.  He did not develop infection so he was not given antibiotics.  When I had surgery years ago, it was routinely given as a precaution.  And then I suffered from serious side effects for months (I was prescribed CIPRO, a fluoroquinolne,  back then, which the FDA now requires a black box warning).  

Please carefully weigh the risks!  

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Just because a peer-review  study was published does not mean it is current or still accepted.  Celiacs would still be eating only bananas as a treatment or type 1 diabetics would be starved.  Stick with current studies, please.  

[Posterboy]

Cyclinglady,

I was wrong to respond to a condition in which I have had no personal experience with.

These studies were for those who were not tolerant to Dapsone and for whom systemic steroids did not effectively work. 

From this this linked research. . .entitled "Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide"

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quoting

"We report a patient with severe dermatitis herpetiformis (DH) who was intolerant of dapsone, sulphapyridine, systemic steroids, and azathioprine. He was treated effectively with a combination of heparin, tetracycline and nicotinamide."

From this research the commonly believed thought is the antibiotics is what helped their remission.  And it could of as easily been the Vitamin.

And why I mentioned the other study that studied only tetracycline and the Nicotinamide (european spelling) showing heparin was not critical to the effective outcome.  The logical outcome  of this study was to either try tetracycline or the Nicotinamide (Vitamin) by itself and see which one of those helped independently of the other.

The doxycyline study was a recent study from 2017 that worked better than coricosteroids  showing it is still being studied today.

But I agree with you Cyclinglady Antibiotics can be dangerous longer term.  But I see no reason the Vitamin (Nicotinamide) shouldn't at least be explored some.

the reaction you had to CIPRO i Had to sulfa drugs . . and can't tolerate them.

I have used doxycycline and tetracycline for ticks bites several time with no long(er) term effects.

I agree the antibiotics (if then) should only be considered when steroids or Dapsone or diet fails to work properly.

Maybe there will be a follow up study on this topic where only Nicotinamide is used in the treatment of DH. . ..

then we we would know with more certainity whether it the antibiotics or the Vitamin that made the difference.  I have found Vitamin(s)/Minerals when I find out which/what ever it is helped my health tremendously.

From a B-complex (which has Niacinamide in it) to Vitamin D to magnesium Citrate they all helped me because I was low in them all.

Posterboy,

 

[ravenwoodglass]

In my childhood my Mom would use iodine if I got a cut or scrape. After I developed DH she had to stop using it and used peroxide instead.  The burning would have me screaming.

If you have DH you need to be VERY strict with the diet and many also avoid high iodine foods. I switched to non-iodized salt but some need to avoid stuff like seaweed and high iodine seafood. It can take a bit of time for the antibodies to leave the skin and I found that to be helpful in letting me know when I had some CC or gluten sneaked in somewhere as a new lesion would start to form in minutes. I have been diagnosed almost 16 years now and I just get one or two tiny lesions that don't show up till a few days after a glutening.

You may also want to check toiletries for gluten ingredients. Gluten can not get through intact skin but if you have lesions it is not intact.

Do research Dapsone throughly before you take it. It can be toxic to the liver and it isn't uncommon for a newly diagnosed celiac to have liver issues at diagnosis. If you do decide to risk it make sure you doctor does bloodwork to check liver function first and repeats those tests frequently while you are taking it. As far as antibiotics go if your lesions are infected then you would need them. If not IMHO they are not needed. Just my opinion.

 Just one more thing, you might not want to wait to talk to your doctor about further testing. If it's not possible then go ahead and start a strict diet. Being gluten free will only impact testing for celiac. Celiac can cause gallbladder problems so those may resolve gluten free.

[squirmingitch]

For a long, long time after I went gluten-free, just putting a band aid on my skin was enough to get it puffed up & red, hot & itchy. It's like your skin is in ultra super hypersensitivity mode. 

[Breezy1]

Thank you for your replies everyone! 

Raven, as a child I always used peroxide so I can’t compare, but I know for surgery I never had a reaction to iodine if it was used to clean the skin. Although 2.5 years ago I had my second emergency c-section and when I woke up my whole body was itching like crazy! I asked the nurses why and they said they had given me Benadryl and it was nothing to worry about. However the Benadryl didn’t help and I was itching forever, then developed a rash on my bottom. I tried talking to doctors and they were all stumped and said they didn’t know what I reacted to! I’m wondering if iodine was used and since I did have a mild rash at the time I reacted? Really makes me wonder! 

I’m wondering if I should trial the diet, like you suggested. I feel like it would be easier for me to be strict if I got a diagnosis, as well as my partner to take my seriously ect, but it just seems so hard to get proper testing done here and I don’t understand why! I went gluten free(as well as many othe things, I was on a very bland diet) about 7 months ago because I went to a naturopath and she thought it may be celiac and other food intolerances so she had me do an elimination diet. I was starting to feel a lot better by week 3 (although not totally better) which was the start of reintroducing foods, but then I messed it all up and ate a meal that had gluten and dairy in it as well as some nightshades, and I felt awful but since I introduced a few things at once wasn’t sure which one caused it. 

I’m not even 100% sure this ultrasound is for my gallbladder, as I’m waiting for two ultrasounds. One for that, and one because last month my period was out of whack and I bled for 20 days, all my hormone levels and thyroid came back normal. They didn’t tell me which one this is for so it may be a longer wait :/ 

wow squirmingitch that sounds awful! I was honestly shocked when the iodine started burning so bad and I saw that the whole area surrounding was red and inflamed, I kind of didn’t expect to get a reaction, or at least not so soon. 

Also, so far the area is still red but has gone down some, the burning stopped but it is a bit itchy, no new blisters yet though.

[squirmingitch]

There is such a thing as iodine allergy. I recall a medical procedure I was in the hospital for & they asked me if I was allergic to iodine. Also, iodine can cause rashes on the skin especially if the solution is applied & then covered up. 

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[Breezy1]

Thanks for the links squirmingitch! The time I had a c section and ended up with a rash after and was itchy all over, it was not in the area iodine would have been applied. But does that mean the patch test doesn’t work? If it can cause a rash in people without DH?

[Breezy1]

Here are a few pictures of my rash now that I figured out how to shrink the file size

[Breezy1]

[squirmingitch]

I did a lot of research on the iodine patch test in 2010-2011 & concluded the patch test was bunk - just another of those internet myths that gets copied & pasted so many times that people can't distinguish truth from fiction; much like propaganda.

I'm sorry but we just really can not tell from pictures. Yes, it could be dh but then again there are many skin conditions/rashes that look alike. If you really want to know for sure then you need to eat gluten everyday for 12 weeks & then get a dh biopsy.

[Breezy1]

Thanks squirmingitch! I think I will talk to my doctor and try to push him for a referral to a dermatologist. And if i can’t get a referral I’ll probably try going gluten free and see if it improves at all. The last time I don’t think I went gluten free long enough for the rash to clear up. 

[Boris123]

@Breezy1 The Iodine patch works perfect for me and other family members. 
I take uge doses of iodine Lugols (oraly with some yoghurt) to correct my Iodine levels and it helps me a lot.
Those bumbs could be and looks a bit like a bromine detoxification.  
Look up detox effects of iodine, so they won't scare you.  There are a lot of good youtube presentations.

Like Dr Jorge Flechas, Sherry Tenpenny, Mark Sircus, Brownstein.

(it looks like some people have a sensitive skin, a iodine patch does not hurt me and it won't get red) 
(I think it makes me tolerate gluten better, you need iodine to make enough stomach acid.
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[cyclinglady]

4 hours ago, Boris123 said:

@Breezy1 The Iodine patch works perfect for me and other family members. 
I take uge doses of iodine Lugols (oraly with some yoghurt) to correct my Iodine levels and it helps me a lot.
Those bumbs could be and looks a bit like a bromine detoxification.  
Look up detox effects of iodine, so they won't scare you.  There are a lot of good youtube presentations.

Like Dr Jorge Flechas, Sherry Tenpenny, Mark Sircus, Brownstein.

(it looks like some people have a sensitive skin, a iodine patch does not hurt me and it won't get red) 
(I think it makes me tolerate gluten better, you need iodine to make enough stomach acid.
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Show me legitimate peer-reviewed studies, please.  Otherwise, I personally disagree.  

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[Breezy1]

I don’t know what bromine detoxification is, but those pictures of my rash were taken before I did the iodine patch test, if that makes a difference.