Dermatitis Herpetiformis ... My Journey

[JynGann]

At my dietitian's visit today she reviewed closely my diet for the past week and praised my morning smoothie which sounds exactly the same as yours. I usually add kefir or yogourt to mine as well and she suggested perhaps substituting greek yogurt for it occasionally because it is higher in protein. The other thing I add is a few tablespoons of ground almond (or almond butter) which she said is excellent, and finally she suggested throwing in a some sunflower seeds because you want to get your ferritin levels back up again and they are one of the best things to eat for that. And drink lots of water was her other comment. 

Thank you! I have been using a cup of almond milk and planned on adding in yogurt. I was worried about kale and yogurt together but figured I'd try it and see. (Kale has something that blocks calcium absorption if eaten at the same time. I will definitely get some sunflower seeds to add into the mix.  I gave up soda a few weeks before I started the gluten free diet and limit myself to one glass of lightly sweetened tea besides that I drink water, probably about 40 oz a day.

[tinpins]

Thank you! I have been using a cup of almond milk and planned on adding in yogurt. I was worried about kale and yogurt together but figured I'd try it and see. (Kale has something that blocks calcium absorption if eaten at the same time. I will definitely get some sunflower seeds to add into the mix.  I gave up soda a few weeks before I started the gluten free diet and limit myself to one glass of lightly sweetened tea besides that I drink water, probably about 40 oz a day.

 

I'm so glad you responded ... I read your reply and thought ?sunflower seeds ... yes sunflower that is what I wrote.

 

I meant to write pumpkin seeds! So sorry. Sunflower seeds are good but it's the pumpkin seeds that have the super iron content.

 

I put some in my morning smoothie and they blend in really well.

 

Pumpkin seeds have 20.7 mgs of iron per cup. By comparison, almonds have 5.4 mgs per cup and sunflower seeds have 4.9 mg per cup.

 

The Gluten-Free diet book by Shelley Case (I referred to above) is excellent for figuring out how to maximize nutrient content of food, etc.

 

I eat lots of kale and she didn't make mention of it being a problem. I'll see her again in a few weeks and ask for her thoughts about kale.

 

The other tips she gave me were:  4000 iu of vit D a day max (I take 5000 iu of D a day), and take omega-3s if you don't eat fish and drink your caffeine between meals (mid morning or mid afternoon).

 

I read something a few days ago by Ann Wigmore that was made into a poster:

 

"The food you eat can be either the safest and most powerful form of medicine or the slowest form of poison" 

[squirmingitch]

Just a heads up FYI here..... the yogurt is high iodine. Iodine makes the dh go itchy, itchy.

[tinpins]

Just a heads up FYI here..... the yogurt is high iodine. Iodine makes the dh go itchy, itchy.

 

 

Thank you!   If there was an icon for a lightbulb I'd be inserting it right here. This could be why I have gut problems and I'm clawing at my upper back today ... yogourt this morning in my smoothie. That'll teach me.    This is a two step back day for me! 

[squirmingitch]

It is really hard keeping all the food rules straight in your head & even on paper. I know, been there, done that. Hard enough doing just gluten then you have to remember there's this in that food & that in this food & such & such in this other food. 

 

I'm sorry your back is giving you fits but happy I saw this & said something or else your back would be a wreck in no time at all. I guess this proves that iodine effects you strongly.

 

(((HUGS))))

[tinpins]

It's like learning to walk again isn't it? Thank you (again)     ... you should write a book!

[pricklypear1971]

Thank you!   If there was an icon for a lightbulb I'd be inserting it right here. This could be why I have gut problems and I'm clawing at my upper back today ... yogourt this morning in my smoothie. That'll teach me.    This is a two step back day for me!

Theoretically you could make your own yogurt from milk that isn't high iodine. There may be carrageenan or another high iodine ingredient in the yogurt. Don't use commercial milk substitutes -all but one hemp milk has carrageenan and that one has sea salt...

I personally make all veggie/fruit smoothies and do much better. Not so sweet. Try The Blender Girl for ideas.

[tinpins]

Oh my ... I had no idea yogourt was so high in iodine. Open Original Shared Link

 

Haven't seen the Open Original Shared Link before ... thank you   I'll figure it out eventually. 

[JynGann]

I'm so glad you responded ... I read your reply and thought ?sunflower seeds ... yes sunflower that is what I wrote.

 

I meant to write pumpkin seeds! So sorry. Sunflower seeds are good but it's the pumpkin seeds that have the super iron content.

 

I put some in my morning smoothie and they blend in really well.

 

Pumpkin seeds have 20.7 mgs of iron per cup. By comparison, almonds have 5.4 mgs per cup and sunflower seeds have 4.9 mg per cup.

 

The Gluten-Free diet book by Shelley Case (I referred to above) is excellent for figuring out how to maximize nutrient content of food, etc.

 

I eat lots of kale and she didn't make mention of it being a problem. I'll see her again in a few weeks and ask for her thoughts about kale.

 

The other tips she gave me were:  4000 iu of vit D a day max (I take 5000 iu of D a day), and take omega-3s if you don't eat fish and drink your caffeine between meals (mid morning or mid afternoon).

 

I read something a few days ago by Ann Wigmore that was made into a poster:

 

"The food you eat can be either the safest and most powerful form of medicine or the slowest form of poison" 

No problem! Pumpkin seeds it is! Thanks so much.

[squirmingitch]

It's like learning to walk again isn't it? Thank you (again)     ... you should write a book!

You're right; it is like learning to walk again. 

Prickly has a good idea about making your own yogurt from low iodine milk. I have a low iodine milk source thankfully very locally. It's a family owned & run dairy & they pasteurize b /c it's the law but do not homogenize. They grow their own food for the cows & do all the milking, bottling & delivery to select stores. I was able to call them & inquire about their cleansing & milking methods. I posted a thread on here some time ago about why there is so much iodine in dairy products. If I don't forget; I will find it & link it before I post this. Anyway, this local dairy does not use iodine to disinfect the cows teats prior to milking; instead they use a bleach solution. They do not use iodine to clean the milking equipment. They only use iodine on the cows teats after the milking is done. So there will be a certain degree of iodine absorption into the udders from the post milking treatment & there is a certain amount in the mineral blocks the cows are given & maybe some in the soil in which the feed is grown & that gets into the milk but it is certainly quite a bit less than the big commercial milk companies. I have found that I can tolerate a limited amount of this local milk w/o getting iodine effects. If you can find something similar near you then you could possibly tolerate certain amounts also.

 

Okay, here's the link to explain why there is so much iodine in dairy products:

https://www.celiac.com/forums/topic/89923-iodine-levels-in-dairy-products/

 

Okay, now I want to address the subject of Kale. I don't know if or how much iodine might be in Kale but I know that in general the "greens" are high in iodine ---- these are "greens" I have read are high iodine:

Spinach

Turnip Greens

Collard Greens

Swiss Chard

Beet Greens

So, personally, I don't eat any of the "greens". That's just my choice. You may find the Kale does not affect you. If you do; then please let me know ~~~ I'll give it a whirl myself!    

 

And just as a reminder ~~~ Asparagus is high in iodine. For some reason my brain just did not want to remember that one. (I LOVE asparagus) I always managed to catch myself before I bought it but it still tries to catch me from time to time. I find myself reaching for the asparagus in the store & then have to draw my hand back.

 

And one last thing. The Omega 3's ~~~ make sure they aren't derived from fish oil or you will be getting the iodine as if you ate the fish. 

 

Oh, I lied. There is yet another "one more thing". This caught Prickly & I both. If you take a multivitamin make SURE it does not contain iodine as many multis DO.

 

Everywhere you turn there are roadblocks & caution lights. 

[pricklypear1971]

You're right; it is like learning to walk again.

Prickly has a good idea about making your own yogurt from low iodine milk. I have a low iodine milk source thankfully very locally. It's a family owned & run dairy & they pasteurize b /c it's the law but do not homogenize. They grow their own food for the cows & do all the milking, bottling & delivery to select stores. I was able to call them & inquire about their cleansing & milking methods. I posted a thread on here some time ago about why there is so much iodine in dairy products. If I don't forget; I will find it & link it before I post this. Anyway, this local dairy does not use iodine to disinfect the cows teats prior to milking; instead they use a bleach solution. They do not use iodine to clean the milking equipment. They only use iodine on the cows teats after the milking is done. So there will be a certain degree of iodine absorption into the udders from the post milking treatment & there is a certain amount in the mineral blocks the cows are given & maybe some in the soil in which the feed is grown & that gets into the milk but it is certainly quite a bit less than the big commercial milk companies. I have found that I can tolerate a limited amount of this local milk w/o getting iodine effects. If you can find something similar near you then you could possibly tolerate certain amounts also.

Okay, here's the link to explain why there is so much iodine in dairy products:

https://www.celiac.com/forums/topic/89923-iodine-levels-in-dairy-products/

Okay, now I want to address the subject of Kale. I don't know if or how much iodine might be in Kale but I know that in general the "greens" are high in iodine ---- these are "greens" I have read are high iodine:

Spinach

Turnip Greens

Collard Greens

Swiss Chard

Beet Greens

So, personally, I don't eat any of the "greens". That's just my choice. You may find the Kale does not affect you. If you do; then please let me know ~~~ I'll give it a whirl myself!

And just as a reminder ~~~ Asparagus is high in iodine. For some reason my brain just did not want to remember that one. (I LOVE asparagus) I always managed to catch myself before I bought it but it still tries to catch me from time to time. I find myself reaching for the asparagus in the store & then have to draw my hand back.

And one last thing. The Omega 3's ~~~ make sure they aren't derived from fish oil or you will be getting the iodine as if you ate the fish.

Oh, I lied. There is yet another "one more thing". This caught Prickly & I both. If you take a multivitamin make SURE it does not contain iodine as many multis DO.

Everywhere you turn there are roadblocks & caution lights.

Oh gawd, the multivitamin. You know I read about iodine and dh while I was cooking shrimp étouffée??? Yeah, ate it anyway, because that couldn't possibly be ME.

[tinpins]

You're right; it is like learning to walk again. 

Prickly has a good idea about making your own yogurt from low iodine milk. I have a low iodine milk source thankfully very locally. It's a family owned & run dairy & they pasteurize b /c it's the law but do not homogenize. They grow their own food for the cows & do all the milking, bottling & delivery to select stores. I was able to call them & inquire about their cleansing & milking methods. I posted a thread on here some time ago about why there is so much iodine in dairy products. If I don't forget; I will find it & link it before I post this. Anyway, this local dairy does not use iodine to disinfect the cows teats prior to milking; instead they use a bleach solution. They do not use iodine to clean the milking equipment. They only use iodine on the cows teats after the milking is done. So there will be a certain degree of iodine absorption into the udders from the post milking treatment & there is a certain amount in the mineral blocks the cows are given & maybe some in the soil in which the feed is grown & that gets into the milk but it is certainly quite a bit less than the big commercial milk companies. I have found that I can tolerate a limited amount of this local milk w/o getting iodine effects. If you can find something similar near you then you could possibly tolerate certain amounts also.

 

Okay, here's the link to explain why there is so much iodine in dairy products:

https://www.celiac.com/forums/topic/89923-iodine-levels-in-dairy-products/

 

Okay, now I want to address the subject of Kale. I don't know if or how much iodine might be in Kale but I know that in general the "greens" are high in iodine ---- these are "greens" I have read are high iodine:

Spinach

Turnip Greens

Collard Greens

Swiss Chard

Beet Greens

So, personally, I don't eat any of the "greens". That's just my choice. You may find the Kale does not affect you. If you do; then please let me know ~~~ I'll give it a whirl myself!    

 

And just as a reminder ~~~ Asparagus is high in iodine. For some reason my brain just did not want to remember that one. (I LOVE asparagus) I always managed to catch myself before I bought it but it still tries to catch me from time to time. I find myself reaching for the asparagus in the store & then have to draw my hand back.

 

And one last thing. The Omega 3's ~~~ make sure they aren't derived from fish oil or you will be getting the iodine as if you ate the fish. 

 

Oh, I lied. There is yet another "one more thing". This caught Prickly & I both. If you take a multivitamin make SURE it does not contain iodine as many multis DO.

 

Everywhere you turn there are roadblocks & caution lights. 

 

Oh boy ... looks like I'm going back more than two steps today. The pain that woke me last night is still waging war in my gut. That's worse than my back at the moment ... I've been reading about iodine in milk and thought I was safe with an organic, non-homogenized yogourt.  Thanks for all the info again ... I seem to be okay with kale but it's not store bought ... organic, home grown and cooked well. I obviously have to pay closer attention to my food lists! 

[pricklypear1971]

Oh boy ... looks like I'm going back more than two steps today. The pain that woke me last night is still waging war in my gut. That's worse than my back at the moment ... I've been reading about iodine in milk and thought I was safe with an organic, non-homogenized yogourt. Thanks for all the info again ... I seem to be okay with kale but it's not store bought ... organic, home grown and cooked well. I obviously have to pay closer attention to my food lists!

Are you using the thyca guidelines? That's what I used. Open Original Shared Link

And are you using digestive enzymes or probiotics yet? They usually help with stomach issues.

[JynGann]

You're right; it is like learning to walk again. 

Prickly has a good idea about making your own yogurt from low iodine milk. I have a low iodine milk source thankfully very locally. It's a family owned & run dairy & they pasteurize b /c it's the law but do not homogenize. They grow their own food for the cows & do all the milking, bottling & delivery to select stores. I was able to call them & inquire about their cleansing & milking methods. I posted a thread on here some time ago about why there is so much iodine in dairy products. If I don't forget; I will find it & link it before I post this. Anyway, this local dairy does not use iodine to disinfect the cows teats prior to milking; instead they use a bleach solution. They do not use iodine to clean the milking equipment. They only use iodine on the cows teats after the milking is done. So there will be a certain degree of iodine absorption into the udders from the post milking treatment & there is a certain amount in the mineral blocks the cows are given & maybe some in the soil in which the feed is grown & that gets into the milk but it is certainly quite a bit less than the big commercial milk companies. I have found that I can tolerate a limited amount of this local milk w/o getting iodine effects. If you can find something similar near you then you could possibly tolerate certain amounts also.

 

Okay, here's the link to explain why there is so much iodine in dairy products:

https://www.celiac.com/forums/topic/89923-iodine-levels-in-dairy-products/

 

Okay, now I want to address the subject of Kale. I don't know if or how much iodine might be in Kale but I know that in general the "greens" are high in iodine ---- these are "greens" I have read are high iodine:

Spinach

Turnip Greens

Collard Greens

Swiss Chard

Beet Greens

So, personally, I don't eat any of the "greens". That's just my choice. You may find the Kale does not affect you. If you do; then please let me know ~~~ I'll give it a whirl myself!    

 

And just as a reminder ~~~ Asparagus is high in iodine. For some reason my brain just did not want to remember that one. (I LOVE asparagus) I always managed to catch myself before I bought it but it still tries to catch me from time to time. I find myself reaching for the asparagus in the store & then have to draw my hand back.

 

And one last thing. The Omega 3's ~~~ make sure they aren't derived from fish oil or you will be getting the iodine as if you ate the fish. 

 

Oh, I lied. There is yet another "one more thing". This caught Prickly & I both. If you take a multivitamin make SURE it does not contain iodine as many multis DO.

 

Everywhere you turn there are roadblocks & caution lights. 

I'm not sure if I react to iodine. My rash has been extremely bad, my whole back, behind. stomach and patches on chest and neck, smaller patches behind my knees and hips, with large sores on my scalp. It started last June and has progressively worsened for the last 11 months. I have completely eliminated gluten but have eaten kale and other foods rich in iodine on a daily basis and while my rash is still there it feels better and seems to be healing and I've only had two new patches in (almost) three weeks. I have pictures but have hesitated to post them because they are not "G" rated. I will see what I can do about editing for modesty.

[mamat78]

This was a symptom that was becoming more and more frequent for me towards the end of my gluten feasting life.

 

It's a most unpleasant and worrisome experience ... I'm sure you've seen this info but for anyone who hasn't, this gives a good overview of what it is:  Open Original Shared Link

 

I have not had one episode of this since I went gluten free! 

I have been gluten free for 10 days and the pulsatile tinitus has not stopped, or even slowed down...I wish I could say it has! 

[tinpins]

I'm not sure if I react to iodine. My rash has been extremely bad, my whole back, behind. stomach and patches on chest and neck, smaller patches behind my knees and hips, with large sores on my scalp. It started last June and has progressively worsened for the last 11 months. I have completely eliminated gluten but have eaten kale and other foods rich in iodine on a daily basis and while my rash is still there it feels better and seems to be healing and I've only had two new patches in (almost) three weeks. I have pictures but have hesitated to post them because they are not "G" rated. I will see what I can do about editing for modesty.

 

Finding the solutions ... connecting the dots ... it's a time consuming issue spurred on by major discomfort/pain. I'm using a modified SCD diet and obviously I'm going to have to modify it further. I need to exchange my printed foods list for one on a chalkboard at the moment 

[tinpins]

I have been gluten free for 10 days and the pulsatile tinitus has not stopped, or even slowed down...I wish I could say it has! 

 

How awful for you ... it's a miserable thing to be experiencing. 

[tinpins]

Are you using the thyca guidelines? That's what I used. Open Original Shared Link

And are you using digestive enzymes or probiotics yet? They usually help with stomach issues.

 

I am using the thyca guidelines but got too confident thinking that I could add yogourt to my morning smoothie every day.When my gut was so unhappy mid-day yesterday I had some yogurt as well for lunch    I started Culturelle over a week ago and funny thing I forgot to take it the day before yesterday. I'm becoming even more vigilant about what I eat now!

[surviormom]

It is like learning to walk again.  I have let the house go just trying to learn in the past few weeks.  I will not go into details on what has been going on with me.  Except, I think I may have had this in the beginning of my going gluten-free last year.  Right after a week of 2 birthdays and an anniversary, I had the flu, a 3 day flu, and then right afterwards I had red dots all over me head to toe.  I looked at the picture in the first post, it looked like that.  I did not panic at the time, because at the time I knew I had something that week I should not have had, and then started looking up rashes associated with gluten, found this and it looked just like mine.  But I never put the flu with it.  Was the flu part of it too?  My husband will want to know this.  We thought this reaction I just had was the worst one, but my temp spiked higher than it ever had with that flu, it was the worst and yet the shortest I had ever had.  I had been trying to be gluten-free for about 6 weeks, after 2 birthdays, I gave in on our anniversary and enjoyed a night out, it was mostly healthy food, but there was dessert.  The rash lasted for at least 4-5 weeks.  We discussed my going to a dermatologist, but I did not want to take the only thing I saw that was prescribed for it, so I did not.  I should have shouldn't I?

 

So my question is, is the flu part of it?  I still get a few itchy red bumps here and there and worry is it coming back?

 

I have not had a positive test, all we know for certain is I should not consume Gluten in any way shape or form.

[pricklypear1971]

It is like learning to walk again. I have let the house go just trying to learn in the past few weeks. I will not go into details on what has been going on with me. Except, I think I may have had this in the beginning of my going gluten-free last year. Right after a week of 2 birthdays and an anniversary, I had the flu, a 3 day flu, and then right afterwards I had red dots all over me head to toe. I looked at the picture in the first post, it looked like that. I did not panic at the time, because at the time I knew I had something that week I should not have had, and then started looking up rashes associated with gluten, found this and it looked just like mine. But I never put the flu with it. Was the flu part of it too? My husband will want to know this. We thought this reaction I just had was the worst one, but my temp spiked higher than it ever had with that flu, it was the worst and yet the shortest I had ever had. I had been trying to be gluten-free for about 6 weeks, after 2 birthdays, I gave in on our anniversary and enjoyed a night out, it was mostly healthy food, but there was dessert. The rash lasted for at least 4-5 weeks. We discussed my going to a dermatologist, but I did not want to take the only thing I saw that was prescribed for it, so I did not. I should have shouldn't I?

So my question is, is the flu part of it? I still get a few itchy red bumps here and there and worry is it coming back?

I have not had a positive test, all we know for certain is I should not consume Gluten in any way shape or form.

Since going gluten-free and figuring out iodine, I have had dh very few times (knock in wood). But one of my most consistent triggers is A VIRUS. That's actually how I know it was/is a virus and not allergies. I break out in dh.

[tinpins]

This is such a wretched condition that searching for solutions becomes priority number one. I feel so unwell today with nausea as well as the gut symptoms, that crawling back into bed is imminent. This condition has me feeling that I'm not as resilient as I thought I was. I too have been letting so much go ... and this is NOT me ... and the psychological impact of starting to feel better and get some energy back, and then to relapse, is a toughie. Well, I find it to be so. I have so much I want to get on and do but today I have to give in to it.

 

It doesn't help that I'm putting together my medical history/notes to visit yet another dermatologist tomorrow and as I look at the paperwork all the dots are connected for me now ... in retrospect ... decades of "we don't know what it is".  I'm only going to the appointment because it is the one my PCP/GP made for me at the beginning of May and his referrals are always excellent. She can answer all the questions for me that the dermatologist who did the biopsy on May 16th didn't seem to have time to answer. 

 

The support and encouragement here is invaluable. Thank you.

[squirmingitch]

I'm so sorry tinpins. I know exactly what you're going through. There are times you just give in & have to focus all your energy towards just getting through the day. This is likely not the last time it will happen either --- unfortunately. 

 

I CAN tell you though that it may take time but it DOES get better!!!!!! It really & truly does!

 

Remember, we've been sick a long time. It will take time to heal.

[JynGann]

I hope you are feeling better today tinpins.

My rash continues to improve. My skin still looks a mess but it does feel better. I slept the whole night without waking up itching for the first time in almost a year!

I have continued with my morning smoothies and I have to tell  you I am eating better than I ever have. I also discovered coconut oil and will now be adding a tablespoon of it in my smoothie as well as cooking with it. It is a bit pricey but it is suppose to help with skin issues as well as lower cholesterol so I'll give it a go.

One other thing, a big thanks to everyone on here, before I found this site I felt so alone. I'm not trying to be blubbery but I know I have been so depressed and I quit talking to my loved ones about how I was feeling because not only did they not understand they would joke about how I was always sick. I know they didn't mean harm but it cut pretty deep. I'm only 40 years old and I felt like I was near the end of my life and sometimes I wished I was. So not only is my body feeling better but my mind is too.

 

Jyn

[tinpins]

Thanks "squirmy" for your encouragement ... this community has been a life-line for me in finding my way out of the dark miserable place I was in.

 

... and "JynGann" when I first came to this site I burst into tears when I realized that I was not alone. Someone understood. Not that my husband isn't supportive and kind, but like you I quit sharing my misery (headaches, gut aches, bleeding nose, suicide rash, etc ... even had a few instances of when I was unstable on my feet and fell and broke a rib a couple of months ago ... now I realize it was related to this condition!). I felt like a hypochondriac! I kept it mostly to myself like you and felt that my life was going to be a short one because I felt so awful. But we've been given a gift ... we know what was making us sick and we can do something about it. So glad for you.

 

Of all the medical professionals I've seen lately, (besides my GP/PCP) the most empathic and supportive was my dietitian, but even she gave me advice which put me into relapse this week. She said to increase the yogourt. BIG mistake. I'm still feeling unwell and just bought a hot water bottle and some ginger and I've made ginger tea with it to calm the nausea. And my hubby gets to eat the yogourt. But she did recommend a book which I'm reading and I recommend ... "How Doctors Think" by Jerome Groopman

 

I bought coconut oil but I'm holding off with that right now and I'm back to plain boiled chicken, carrots and green beans ... and bananas. The food diary is great for tracking what triggers relapses and I note them on the opposite page of my food intake.

 

We have reason to hope : ) 

[squirmingitch]

Just a note here about the coconut oil. I'm not sure...... I read on some sites that coconut is high in iodine thus it follows that coconut flour as well as coconut milk & coconut oil would be high iodine also. Now I'm not sure just how much iodine or just how high & it wasn't a site like thyca.org sooooooo...... For me, I choose not to go for it until my rash gives me some relief for a few solid months then I might get brave & try it. It's up to you to decide what you want to try. I'm still too miserable to risk flaming this stuff up more than it already is.

 

And I too felt the same way when I came to this site & had also just shut up about it & bore it all myself & thought I was going to have a short life.