Iodine and gluten-free

[ItchDrivingMeCrazy]

Hi everyone,

I am trying to figure out if I have DH. Excruciating rash.. 

My bloods came out negative - IGA 1.2 g/L [0.8 - 4.0] (I'm still waiting to see the doctor. I am planning to find out more about what type of test they did after reading a lot online of TG2 and TG3) I find it really hard to understand which is what.

I had a skin biopsy last week. I am so desperate to move any type of healing along at this time, so I went gluten-free (and more or less iodine-free - thanks to everyone who advised me on my previous post) the day after the biopsy. I do understand that some people struggle for years before their rash clears up after going gluten-free. I was just wondering if anyone out there has felt results faster (Much faster perhaps?) And if the iodine-free diet speeds it up as well? Any hope is very welcome 🙂 

I know everyone's rash is different, so to put it in perspective it is now covering both shins front and back (about 70%) both sides of both knees, front of both thighs, lower back and a patch down each side of my bum, lower belly, started circling my belly button and grew out to cover a larger area and spreading towards the groin on both sides + my arms pretty much covered now, about 60%. What has happened to your rash when it starts to heal? Does it stay in large areas for a long time or does most of it go away leaving smaller patches?

I'm also wondering how many people on here have had negative blood tests and then got a diagnosis for DH further down the line. Reading back in the forum it seems as if it happens now and then, but the doctors seem very negative about the possibility. It really doesn't help when there are 3 months in between appointments and a total refusal to investigate two issues at once. I will be skin-less by the time I'm any wiser. (joke)

 

 

 

[Wheatwacked]

Here is a good article from NHS Inform Dermatitis herpetiformis that will answer some of your question.

• DH affects around 1 in 10,000 people.
• Most people with DH will have the same kind of gut damage seen with coeliac disease, but may not complain of gut symptoms
• Just over half (60%) of people with DH don’t have gut symptoms.
• The length of time it takes for the skin to heal varies from person to person but it can take up to 2 years or more.
• Medication will only be given to control the skin itching and blisters and doesn’t treat any other symptoms.  The drug most likely to be used is called Dapsone.

Another article from the US. Dermatitis Herpetiformis: What Practitioners Need to Know. 

• This review highlights distinguishing clinical symptoms and serves to aid the reader in the diagnosis and treatment of DH.
• However, serum markers such as IgA endomysial antibodies are negative in as many as 10-37% of patients with DH.

Neither mentions Iodine.

But read this case study:  Dermatitis herpetiformis resistant to dapsone due to dietary iodide ingestion 

• the patient was asked to discontinue her use of the kelp-containing supplement. Over a 2-month period, her condition showed a dramatic improvement of pruritus, and she stopped developing new lesions. Her symptoms of DH stabilized, and she has remained clear for 4 years with a GFD, dapsone 50 mg twice a day, and topical corticosteroid as needed.
• However, to our knowledge, no other cases linking iodide-rich dietary supplements to DH flares have been reported.
• Medications most clearly linked to drug-induced DH flares include nonsteroidal anti-inflammatory drugs, specifically ibuprofen and indomethacin.

And maybe the best explanation is Dr. Warren Heymann: Aha! The Iodide Paradox Now Makes Sense!

• The exacerbation of DH by iodides was demonstrated in a study of the KI patch test performed in 26 patients with DH.  All 5 patients with active disease, but not on treatment, had a positive test, while only 2 of 6 patients on a gluten-free diet, and only 1 of 8 on dapsone, were positive. All 3 patients in remission and 2 with linear IgA (but with active disease) were negative. 
• Taylor and Zone hypothesized that conformational change in TG3 induced by high concentrations of KI would allow for increased enzymatic activity.  They were able to confirm this hypothesis in a dose-dependent manner in vitro. Presumably, the IgA-aggregated enzyme’s increased activity induced by KI enhanced DH in these patients.
• KI is useful in most neutrophilic disorders. DH is an exception because of KI’s conformational effect on TG3.

And an article from 1996 with lots of comments.

"Dr. Zone also explained that dermatitis herpetiformis patients need not avoid iodine indefinitely. Iodine is an important mineral for our bodies. dermatitis herpetiformis patients can stop avoiding iodine when their rash symptoms clear up which can take anywhere from a few months to a couple of years on a gluten-free diet."

 

[Raquel2021]

4 hours ago, Wheatwacked said:

Here is a good article from NHS Inform Dermatitis herpetiformis that will answer some of your question.

• DH affects around 1 in 10,000 people.
• Most people with DH will have the same kind of gut damage seen with coeliac disease, but may not complain of gut symptoms
• Just over half (60%) of people with DH don’t have gut symptoms.
• The length of time it takes for the skin to heal varies from person to person but it can take up to 2 years or more.
• Medication will only be given to control the skin itching and blisters and doesn’t treat any other symptoms.  The drug most likely to be used is called Dapsone.

Another article from the US. Dermatitis Herpetiformis: What Practitioners Need to Know. 

• This review highlights distinguishing clinical symptoms and serves to aid the reader in the diagnosis and treatment of DH.
• However, serum markers such as IgA endomysial antibodies are negative in as many as 10-37% of patients with DH.

Neither mentions Iodine.

But read this case study:  Dermatitis herpetiformis resistant to dapsone due to dietary iodide ingestion 

• the patient was asked to discontinue her use of the kelp-containing supplement. Over a 2-month period, her condition showed a dramatic improvement of pruritus, and she stopped developing new lesions. Her symptoms of DH stabilized, and she has remained clear for 4 years with a GFD, dapsone 50 mg twice a day, and topical corticosteroid as needed.
• However, to our knowledge, no other cases linking iodide-rich dietary supplements to DH flares have been reported.
• Medications most clearly linked to drug-induced DH flares include nonsteroidal anti-inflammatory drugs, specifically ibuprofen and indomethacin.

And maybe the best explanation is Dr. Warren Heymann: Aha! The Iodide Paradox Now Makes Sense!

• The exacerbation of DH by iodides was demonstrated in a study of the KI patch test performed in 26 patients with DH.  All 5 patients with active disease, but not on treatment, had a positive test, while only 2 of 6 patients on a gluten-free diet, and only 1 of 8 on dapsone, were positive. All 3 patients in remission and 2 with linear IgA (but with active disease) were negative. 
• Taylor and Zone hypothesized that conformational change in TG3 induced by high concentrations of KI would allow for increased enzymatic activity.  They were able to confirm this hypothesis in a dose-dependent manner in vitro. Presumably, the IgA-aggregated enzyme’s increased activity induced by KI enhanced DH in these patients.
• KI is useful in most neutrophilic disorders. DH is an exception because of KI’s conformational effect on TG3.

And an article from 1996 with lots of comments.

"Dr. Zone also explained that dermatitis herpetiformis patients need not avoid iodine indefinitely. Iodine is an important mineral for our bodies. dermatitis herpetiformis patients can stop avoiding iodine when their rash symptoms clear up which can take anywhere from a few months to a couple of years on a gluten-free diet."

 

Very interesting info. So if you elimate iodized salt from your diet and other iodine rich foods how are you to get the iodine your thyroid needs. Just asking because my endocrinologist told me to get rid off iodized salt and kelp.for my Hastings 

Just now, Raquel2021 said:

Very interesting info. So if you elimate iodized salt from your diet and other iodine rich foods how are you to get the iodine your thyroid needs. Just asking because my endocrinologist told me to get rid off iodized salt and kelp.for my Hastings 

Hashimoto's 

[Raquel2021]

4 hours ago, Wheatwacked said:

Here is a good article from NHS Inform Dermatitis herpetiformis that will answer some of your question.

• DH affects around 1 in 10,000 people.
• Most people with DH will have the same kind of gut damage seen with coeliac disease, but may not complain of gut symptoms
• Just over half (60%) of people with DH don’t have gut symptoms.
• The length of time it takes for the skin to heal varies from person to person but it can take up to 2 years or more.
• Medication will only be given to control the skin itching and blisters and doesn’t treat any other symptoms.  The drug most likely to be used is called Dapsone.

Another article from the US. Dermatitis Herpetiformis: What Practitioners Need to Know. 

• This review highlights distinguishing clinical symptoms and serves to aid the reader in the diagnosis and treatment of DH.
• However, serum markers such as IgA endomysial antibodies are negative in as many as 10-37% of patients with DH.

Neither mentions Iodine.

But read this case study:  Dermatitis herpetiformis resistant to dapsone due to dietary iodide ingestion 

• the patient was asked to discontinue her use of the kelp-containing supplement. Over a 2-month period, her condition showed a dramatic improvement of pruritus, and she stopped developing new lesions. Her symptoms of DH stabilized, and she has remained clear for 4 years with a GFD, dapsone 50 mg twice a day, and topical corticosteroid as needed.
• However, to our knowledge, no other cases linking iodide-rich dietary supplements to DH flares have been reported.
• Medications most clearly linked to drug-induced DH flares include nonsteroidal anti-inflammatory drugs, specifically ibuprofen and indomethacin.

And maybe the best explanation is Dr. Warren Heymann: Aha! The Iodide Paradox Now Makes Sense!

• The exacerbation of DH by iodides was demonstrated in a study of the KI patch test performed in 26 patients with DH.  All 5 patients with active disease, but not on treatment, had a positive test, while only 2 of 6 patients on a gluten-free diet, and only 1 of 8 on dapsone, were positive. All 3 patients in remission and 2 with linear IgA (but with active disease) were negative. 
• Taylor and Zone hypothesized that conformational change in TG3 induced by high concentrations of KI would allow for increased enzymatic activity.  They were able to confirm this hypothesis in a dose-dependent manner in vitro. Presumably, the IgA-aggregated enzyme’s increased activity induced by KI enhanced DH in these patients.
• KI is useful in most neutrophilic disorders. DH is an exception because of KI’s conformational effect on TG3.

And an article from 1996 with lots of comments.

"Dr. Zone also explained that dermatitis herpetiformis patients need not avoid iodine indefinitely. Iodine is an important mineral for our bodies. dermatitis herpetiformis patients can stop avoiding iodine when their rash symptoms clear up which can take anywhere from a few months to a couple of years on a gluten-free diet."

 

I wonder if in any way iodized salt mimics gluten in any way. 

[ItchDrivingMeCrazy]

4 hours ago, Wheatwacked said:

Here is a good article from NHS Inform Dermatitis herpetiformis that will answer some of your question.

• DH affects around 1 in 10,000 people.
• Most people with DH will have the same kind of gut damage seen with coeliac disease, but may not complain of gut symptoms
• Just over half (60%) of people with DH don’t have gut symptoms.
• The length of time it takes for the skin to heal varies from person to person but it can take up to 2 years or more.
• Medication will only be given to control the skin itching and blisters and doesn’t treat any other symptoms.  The drug most likely to be used is called Dapsone.

Another article from the US. Dermatitis Herpetiformis: What Practitioners Need to Know. 

• This review highlights distinguishing clinical symptoms and serves to aid the reader in the diagnosis and treatment of DH.
• However, serum markers such as IgA endomysial antibodies are negative in as many as 10-37% of patients with DH.

Neither mentions Iodine.

But read this case study:  Dermatitis herpetiformis resistant to dapsone due to dietary iodide ingestion 

• the patient was asked to discontinue her use of the kelp-containing supplement. Over a 2-month period, her condition showed a dramatic improvement of pruritus, and she stopped developing new lesions. Her symptoms of DH stabilized, and she has remained clear for 4 years with a GFD, dapsone 50 mg twice a day, and topical corticosteroid as needed.
• However, to our knowledge, no other cases linking iodide-rich dietary supplements to DH flares have been reported.
• Medications most clearly linked to drug-induced DH flares include nonsteroidal anti-inflammatory drugs, specifically ibuprofen and indomethacin.

And maybe the best explanation is Dr. Warren Heymann: Aha! The Iodide Paradox Now Makes Sense!

• The exacerbation of DH by iodides was demonstrated in a study of the KI patch test performed in 26 patients with DH.  All 5 patients with active disease, but not on treatment, had a positive test, while only 2 of 6 patients on a gluten-free diet, and only 1 of 8 on dapsone, were positive. All 3 patients in remission and 2 with linear IgA (but with active disease) were negative. 
• Taylor and Zone hypothesized that conformational change in TG3 induced by high concentrations of KI would allow for increased enzymatic activity.  They were able to confirm this hypothesis in a dose-dependent manner in vitro. Presumably, the IgA-aggregated enzyme’s increased activity induced by KI enhanced DH in these patients.
• KI is useful in most neutrophilic disorders. DH is an exception because of KI’s conformational effect on TG3.

And an article from 1996 with lots of comments.

"Dr. Zone also explained that dermatitis herpetiformis patients need not avoid iodine indefinitely. Iodine is an important mineral for our bodies. dermatitis herpetiformis patients can stop avoiding iodine when their rash symptoms clear up which can take anywhere from a few months to a couple of years on a gluten-free diet."

 

Very helpful articles, thank you so much. Two of them I'd read last week but the others were new. I feel like I read and read so much but it is quite hard to make sense of it all. 

I'm still not sure what has caused the rash, so I am quitting gluten and iodine to see if it helps. Knowing that I probably need to start again if further tests are required. Even if my rash is caused by Gluten I was hoping that the iodine is a temporary measure.

I'm going to read up on this tonight 🙂

[Wheatwacked]

9 hours ago, Raquel2021 said:

how are you to get the iodine your thyroid needs.

Good question.  All the research done is on potassium and sodium  iodate and iodide forms.  The molecular I2 form is clumped in but never specifically mentioned.  Research in this may bear watching reguarding DH. Molecular Iodine: Could This Be a Game Changer for Dentistry?

Though on a positive note for us smokers: Ali and Lear speculated that smoking might have a protective effect against DH, since it suppresses natural killer (NK) lymphocytes and reduces intestinal IgA secretion Dermatitis Herpetiformis: Novel Perspectives

😁🚬