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Dermatitis Herpetiformis ... My Journey

dernatitis herpetiformis

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#106 tinpins

 
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Posted 05 June 2013 - 11:23 AM

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


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"If you're going through hell, keep going" - Winston Churchill

 

 


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#107 pricklypear1971

 
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Posted 05 June 2013 - 11:53 AM

Thank you!  :o 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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#108 tinpins

 
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Posted 05 June 2013 - 01:01 PM

Oh my ... I had no idea yogourt was so high in iodine. It's a concentrated source!

 

Haven't seen the Blender Girl website before ... thank you  :) I'll figure it out eventually. 


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#109 JynGann

 
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Posted 05 June 2013 - 02:41 PM

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.


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#110 squirmingitch

 
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Posted 05 June 2013 - 03:55 PM

It's like learning to walk again isn't it? Thank you (again)   :wub:  ... 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:

http://www.celiac.co...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! :lol:  :lol:  :lol:

 

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. 


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#111 pricklypear1971

 
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Posted 05 June 2013 - 05:09 PM

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:
http://www.celiac.co...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! :lol: :lol: :lol:

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.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#112 tinpins

 
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Posted 05 June 2013 - 05:11 PM

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:

http://www.celiac.co...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! :lol:  :lol:  :lol:

 

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! 


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#113 pricklypear1971

 
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Posted 05 June 2013 - 05:47 PM

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. http://www.thyca.org/Cookbook.pdf

And are you using digestive enzymes or probiotics yet? They usually help with stomach issues.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#114 JynGann

 
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Posted 05 June 2013 - 06:38 PM

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:

http://www.celiac.co...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! :lol:  :lol:  :lol:

 

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.


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#115 mamat78

 
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Posted 05 June 2013 - 08:45 PM

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:  http://www.tinnitus....satile-tinnitus

 

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! 


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#116 tinpins

 
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Posted 06 June 2013 - 02:49 AM

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  :wacko:


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#117 tinpins

 
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Posted 06 June 2013 - 02:51 AM

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. 


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"If you're going through hell, keep going" - Winston Churchill

 

 


#118 tinpins

 
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Posted 06 June 2013 - 03:10 AM

Are you using the thyca guidelines? That's what I used. http://www.thyca.org/Cookbook.pdf

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!


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"If you're going through hell, keep going" - Winston Churchill

 

 


#119 surviormom

 
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Posted 06 June 2013 - 05:31 AM

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.


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#120 pricklypear1971

 
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Posted 06 June 2013 - 05:39 AM

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.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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