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Dermatitis Herpetiformis ... My Journey

dernatitis herpetiformis

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#16 squirmingitch

 
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Posted 12 May 2013 - 03:18 PM

A quick & I'm sure not all inclusive (b/c Murphy's Law deems I forget something  :lol: ) run down of iodine & a lot of these things are not listed on the thyca site now but were at one time. Here we go:

raisins & grapes

Watermelon

asparagus

all dairy

egg yolks --- whites are fine it's the yolk that carries the iodine

seafood

lima beans

turnip greens, mustard greens, spinach ---- "greens" as we call them in the south

peanuts b/c the skin carries the iodine

the skin of potatoes so peel them deeply

carrageenan (comes from kelp from the sea) watch out - I found it in sherbet & popsicles - not all brands but some. Carrageenan is a BITCH!

There are a few more names for derivatives of kelp or sea algae --- thyca lists them

white beans, kidney beans & a few more

iodized salt of course so use plain salt or sea salt

coconut, coconut milk, coconut flour

red dye #3

 

here's a link to the thyca low iodine diet:

http://www.thyca.org/rai.htm#diet

 

OH! And make sure ALL your meds, both OTC & prescription, are gluten free & iodine free --- have the pharmacist check & then you double check the pharmacist. Don't forget to check your vitamins --- often containing iodine -- beware.


  • 1

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.

 


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#17 tinpins

 
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Posted 12 May 2013 - 04:17 PM

A quick & I'm sure not all inclusive (b/c Murphy's Law deems I forget something  :lol: ) run down of iodine & a lot of these things are not listed on the thyca site now but were at one time. Here we go:
raisins & grapes
Watermelon
asparagus
all dairy
egg yolks --- whites are fine it's the yolk that carries the iodine
seafood
lima beans
turnip greens, mustard greens, spinach ---- "greens" as we call them in the south
peanuts b/c the skin carries the iodine
the skin of potatoes so peel them deeply
carrageenan (comes from kelp from the sea) watch out - I found it in sherbet & popsicles - not all brands but some. Carrageenan is a BITCH!
There are a few more names for derivatives of kelp or sea algae --- thyca lists them
white beans, kidney beans & a few more
iodized salt of course so use plain salt or sea salt
coconut, coconut milk, coconut flour
red dye #3
 
here's a link to the thyca low iodine diet:
http://www.thyca.org/rai.htm#diet
 
OH! And make sure ALL your meds, both OTC & prescription, are gluten free & iodine free --- have the pharmacist check & then you double check the pharmacist. Don't forget to check your vitamins --- often containing iodine -- beware.

 
 
Again ... thank you, thank you!  I was all set to make a list for myself this evening. And for the last few days I've been carefully checking everything before it goes into my mouth (like vitamins). Once I get myself familiar with the process I'll be fine. I've had to avoid lots of foods (curry = anaphylaxis) and drugs (aspirin, NSAIDs, sulfa, etc.) for 30+ years so this is just another layer of learning and avoiding.
 
Can't believe what I am seeing on this list though. Watermelon and peanuts give me the worst belly ache so I can't eat them ... appears that my body has been trying to get my attention for years.   :mellow:


Edited by tinpins, 12 May 2013 - 05:36 PM.

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

 

 


#18 squirmingitch

 
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Posted 12 May 2013 - 04:22 PM

A few more items I would like to cover.

Gluten withdrawal. Use the Google search box near the top on the left hand side & put in gluten withdrawal --- you'll come up with hundreds of threads dealing with the subject. Familiarize yourself with it as you may experience it. Most of us do; some don't. My hubs was 1 of the lucky ones who didn't but probably b/c he was gluten light b/c of me for 5 months before we found out he had dh too.

 

We have not eaten out once yet. B/C of the risk of cross contamination (cc) is too great & dh is sensitive to the tiniest amount of gluten. Eat out at your own risk.

 

If your family would agree to go gluten-free with you at least IN the home; it would make things so much easier. They can eat gluten when away from home. But that's something you have to discuss with them & decide as a family. Hubs has to brush his teeth WELL before kissing or you can get glutened.

 

Here are some things you can eat to help get over the rough spots. Being as my hubs & I are both low iodine I will share some of the things we have found that fit both the gluten-free & the iodine criteria.

Namaste' Spice Cake Mix ---- YUM!!!!! It actually rises! And tastes wonderful! Namaste' products are made in a gluten-free facility & no dairy or soy is used. Yay! Frost with Duncan Hines Creamy Homestyle Classic Vanilla Icing --- no dairy in it.

Enjoy Life cookies are terrific & no dairy, soy, nuts etc.... They also make chocolate chips which have no dairy or casein & are great.

Frito Lay (google their gluten-free list) has gluten-free products but they also have a list of the ones they batch test --- we only eat from that list.

Mediterranean Snack Foods is a gluten-free facility totally. They make some baked chips & other stuff & they test & have the gluten-free certification org. approval. Check the individual products though as some contain milk or casein products. They use plain salt or sea salt but no iodized salt.

Vlasic pickles has 2 plants --- 1 they use plain salt & the other they use iodized salt --- you'd have to call with the code on each & every jar to find out which it was made in so we decided not to eat Vlasic anymore. Mt. Olive pickles use plain salt. Ball Park hot dogs, Jimmy Dean sausages & Hillshire Farms clearly label any gluten containing ingredients & none of them use iodized salt in their products.

Glutino's Genius bread has no milk or casein & uses plain salt.

Kosher products do not use iodized salt.

I tired Chebe mixes but we found them unsatisfactory. Hard on the outside & like sticky rubber inside.


  • 1

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.

 


#19 pricklypear1971

 
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Posted 12 May 2013 - 05:47 PM

Jane thank you ... I believe there will be a smiley face but I think it's a bit in the distance yet. This feels so wretched that there is no way I would want to poison myself with gluten just to possibly get a positive diagnosis. I've done enough damage to my body ... it's time for healing.

I'm off gluten and I'll get off the iodine too as soon as I've figured out where it all is : ) There's lots to learn. I'm only a few days on this new path and there is some improvement ... not a single headache or stomach ache! Now that's amazing!

But the itch ... oh wow ... don't we know ... it's wretched and it seems like it is worse today with lots of new nasties appearing. Never mind ... I'm optimistic that change is on the way :)

(I did look at your photos and saw the same wretched nasties!)

Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it.

There's a website for gluten-free meds: http://www.glutenfre...gs.com/list.htm
  • 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!

#20 tinpins

 
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Posted 12 May 2013 - 06:12 PM

Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it.

There's a website for gluten-free meds: http://www.glutenfre...gs.com/list.htm

 

 

Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it.

There's a website for gluten-free meds: http://www.glutenfre...gs.com/list.htm

 

This is wonderful!

Again ... I feel like I have been given a most wonderful gift. All this information is invaluable.

I just had my husband apply liberal amounts of witch hazel on my back, and while it was still moist to fan it.

A few minutes of relief ... but now I'm off to get an icepack : )


  • 0

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

 

 


#21 pricklypear1971

 
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Posted 12 May 2013 - 06:22 PM

Compression helped me. I'd pack a super soft washcloth under my arms and squeeze. Especially in the evenings when it would swell and pop.

And ice packs. Lots of ice packs. I slept with ice packs.
  • 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!

#22 tinpins

 
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Posted 13 May 2013 - 07:05 AM

Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it.

There's a website for gluten-free meds: http://www.glutenfre...gs.com/list.htm

 

 

Ice packs!!! Some people use numbing gel - I think Walgreens brand is gluten-free. I think it's the kind you'd put on scrapes, or maybe gums for a toothache. Search in the dh forum for it.

There's a website for gluten-free meds: http://www.glutenfre...gs.com/list.htm

 

 

Ice packs ... who knew. They work. Thanks also for the website for the gluten free meds. 

 

Today I was reading forum threads about blood in clothing and sheets ... boy can I identify. When this first started 15 months ago  :( I was away from home for two months in a rental apartment overseas. I was almost paranoid about bleeding into the sheets and would use a towel or piece of clothing on my pillow case and sheet to avoid this happening. 

 

It is such a relief to finally know that this can change. In a desperate attempt to figure out what was causing this misery I have had my doctor check me for parasites, h. pylori bacteria and I've even thought "could it be bedbugs" ... who hasn't been here?

 

Right now I'm still listing all the things that I can eat and what I need to avoid besides gluten (e.g. iodine restriction and my food allergies for which I will be retested later this week).

 

The more I read on the forum threads the more pieces are falling into place. The help I am getting from everyone's sharing is unbelievable. Thank you almost seems inadequate ... with your information and with a some effort on my part  .... I'm getting my quality of life back!  :wub: 


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

 

 


#23 tinpins

 
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Posted 14 May 2013 - 04:07 AM

It's hell alright ... it's as if my body is saying "where's my gluten fix?" ... more eruptions, more itching, no headaches but a "numb" feeling in my head and a sense I will burst into tears if anyone looks at me the wrong way. And I had a stomach ache last night after supper which was so disappointing after almost a week free of them. I'm keeping a food diary to keep track.

 

I retook photos of both sides of my body today for my records and was absolutely amazed at how symmetrical this rash is.

 

Now I find myself really worrying about the ongoing (I've noticed it for the 15 months I've had my rash) slight discomfort I have had in my left kidney area. Anyone else had kidney involvement? I've got lots of questions for my doctors ... but in the meantime I just have to  keep going on this new journey and try and find some comfort in the knowledge that this will get better.


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

 

 


#24 squirmingitch

 
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Posted 14 May 2013 - 05:47 AM

I've read some threads where people have had some kidney issues --- 1 I read recently had to do with the person having blood in their urine for a long time & then gluten free it's gone. Poof! I had microscopic traces in my urine (before I knew about celiac) & went lickety split to the urologist b/c my hubs had bladder cancer & I know the first sign is blood in your urine so the uro checked me out 14 ways from Sunday. Did CT scans, cystoscopy & a real expensive fluorescent something or other test which I can't remember the name of now but it's the gold standard for seeing if anything is amiss with the entire urinary tract. Zip, zilch, nada. He tested my urine 3 times over several months & still the microscopic blood continued. He finally said, "It's just what you do. Some people do." Guess what? Since going gluten free  there has been no blood in my urine. Hmmmm.....

But go ahead & tell your doc about it anyway & get it checked out.

That numb feeling in your head is what we call brain fog. It might get worse to the point that you feel like a complete & utter idiot. Sorry, just letting you know. And this too shall pass. It really will, I promise. Oh yeah, you'll get all whacked out with the emotions like you're going through menopause & most of us get really, really angry --- we snap & snarl with zero provocation. 

The stomach ache could be gluten withdrawal or a food reaction. good that you're keeping a food log. GOOD GIRL!!!!! But stomach issues from gluten can take a while to resolve. You can yo-yo for 6 months or possibly longer. We didn't get like this overnight & we won't heal overnight. It takes time. The important thing is that you began NOW instead of years from now.

 

Hugs hon

 

(((((((tinpin))))))))


  • 0

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.

 


#25 tinpins

 
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Posted 14 May 2013 - 06:28 AM

I've read some threads where people have had some kidney issues --- 1 I read recently had to do with the person having blood in their urine for a long time & then gluten free it's gone. Poof! I had microscopic traces in my urine (before I knew about celiac) & went lickety split to the urologist b/c my hubs had bladder cancer & I know the first sign is blood in your urine so the uro checked me out 14 ways from Sunday. Did CT scans, cystoscopy & a real expensive fluorescent something or other test which I can't remember the name of now but it's the gold standard for seeing if anything is amiss with the entire urinary tract. Zip, zilch, nada. He tested my urine 3 times over several months & still the microscopic blood continued. He finally said, "It's just what you do. Some people do." Guess what? Since going gluten free  there has been no blood in my urine. Hmmmm.....

But go ahead & tell your doc about it anyway & get it checked out.

That numb feeling in your head is what we call brain fog. It might get worse to the point that you feel like a complete & utter idiot. Sorry, just letting you know. And this too shall pass. It really will, I promise. Oh yeah, you'll get all whacked out with the emotions like you're going through menopause & most of us get really, really angry --- we snap & snarl with zero provocation. 

The stomach ache could be gluten withdrawal or a food reaction. good that you're keeping a food log. GOOD GIRL!!!!! But stomach issues from gluten can take a while to resolve. You can yo-yo for 6 months or possibly longer. We didn't get like this overnight & we won't heal overnight. It takes time. The important thing is that you began NOW instead of years from now.

 

Hugs hon

 

(((((((tinpin))))))))

 

The support and encouragement you so kindly share is a very precious gift. Thank you so much. Putting all the paperwork together from my medical history is probably not helping me at the moment. But I need to do it so my doctors don't have to waste any more time. It is like fitting all the pieces of the puzzle together and seeing the whole picture finally. I'll be in better spirits once some of these symptoms ease up and I have been reassured that 40 years of poisoning myself with gluten have not done any more damage to my body than what I already know about. Osteoporosis diagnosis five years ago was a huge shock and I can't help but wonder if the Dupuytrens (10 yrs +) that has been worsening over the last year is related? Meanwhile your hugs are greatly appreciated as is your advice.  You understand and care enough to take the time to help others struggling along on the same path ... Hugs to you too  :wub:


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

 

 


#26 pricklypear1971

 
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Posted 14 May 2013 - 10:26 AM

Coming off gluten can be terrible. In the beginning you get into it by accident...and gluten-free items can even set you off. It's a mess. It will NOT be perfect in the beginning.

Your body is flipping out and unhappy. Unhappy on it, unhappy off it. Eventually it will calm down.

My husband claims to know when I get glutened. I get quiet and a bit temperamental. Of course, now my brain works better most of the time so I'm pretty sure my husband and son feel like glutening me so I don't notice.....things. :).

You are also dealing with more than one disease, from the sound of it. Ai bodies are not easily persuaded to change. They protest, IMO. Hopefully you'll soon be able to separate one disease symptom from the other.
  • 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!

#27 sisterlynr

 
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Posted 14 May 2013 - 09:08 PM

This is wonderful!

Again ... I feel like I have been given a most wonderful gift. All this information is invaluable.

I just had my husband apply liberal amounts of witch hazel on my back, and while it was still moist to fan it.

A few minutes of relief ... but now I'm off to get an icepack : )

 

 

 

I have to laugh!  I am sitting on an ice pack, as I type.  I have another one on my belly.  I had not looked at the foods that are high in iodine and recently saw the list from Squirmy . . . . I have been eating high iodine foods and new blisters are popping up.  I try to pop them without causing them to bleed.  Once the fluid is released the itch seems to calm a bit and I know that is true when I have the blisters on the soles of my feet.  

 

Ice does numb the skin. . . just wish I could find a body length ice pack.  I take Dapsone but thinking about asking for the topical to see how it works.  I still want to start a liquid gluten free replacement meal.  I'd rather KNOW I was totally gluten free and iodine free than go through the trial and error process.

 

Dapsone dampens the 'suicidal itch' and I'm sooooooooo thankful for that.  Just want it gone!     :) 


  • 0

Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#28 tinpins

 
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Posted 15 May 2013 - 05:07 AM

I have to laugh!  I am sitting on an ice pack, as I type.  I have another one on my belly.  I had not looked at the foods that are high in iodine and recently saw the list from Squirmy . . . . I have been eating high iodine foods and new blisters are popping up.  I try to pop them without causing them to bleed.  Once the fluid is released the itch seems to calm a bit and I know that is true when I have the blisters on the soles of my feet.  

 

Ice does numb the skin. . . just wish I could find a body length ice pack.  I take Dapsone but thinking about asking for the topical to see how it works.  I still want to start a liquid gluten free replacement meal.  I'd rather KNOW I was totally gluten free and iodine free than go through the trial and error process.

 

Dapsone dampens the 'suicidal itch' and I'm sooooooooo thankful for that.  Just want it gone!     :) 

 

That's a business opportunity ... a body length ice pack. We can laugh and make fun but how uncomfortable this wretched journey can be.

 

I'm a week off gluten and there is some improvement with some symptoms like the headaches and nasty stomach aches but the killer itch persists and has spread to my head. Never mind ... stay on the course and eventually it will get better I keep telling myself. 

 

I've been so confused about food that I've starting making a chart for myself that I can put on the fridge that shows gluten free, iodine rich, salicylates and my allergies to be able to make sense of what I should/shoudn't be eating. The brain seems to need a bit of help at the moment ... I get what "brain fog" is now! I got it. 

 

I'm off to my allergist in the morning ... it will be interesting : )

 

Meanwhile I'm reading, reading, reading and educating myself.

 

I found a pizza crust recipe in Pinterest this morning from this blogger which led me to her immensely helpful article on going gluten free:  

http://glutenfreegod...-go-g-free.html


  • 1

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

 

 


#29 squirmingitch

 
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Posted 15 May 2013 - 09:48 AM

tinpins has said she's not interested in Dapsone except maybe the topical form. I'm saying this for others who may come later & read this thread as well as the immediate. tinpins is allergic to sulfa as am I & Dapsone is in the sulfa class & it's iffy if she or I would be able to tolerate it even if she or I were willing to turn to oral Dapsone. I'm not sure what the topical will do as far as allergic reaction for either of us.

 

Refrigerator charts are good tinpins. :) You go girl!


  • 1

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.

 


#30 tinpins

 
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Posted 16 May 2013 - 02:53 PM

May 16, 2013: Diagnosis - dermatitis herpetiformis

 

Question asked in my presence by my Allergist to his Resident:

 

"What percentage of people that present with dermatitis herpetiformis have celiac disease?"

 

Then without letting the resident respond he answered his own question:

 

"That was a trick question. All people that present with dermatitis herpetiformis have celiac disease, but not all people with celiac disease have dermatitis herpetiformis."

 

Biopsies were taken this afternoon and a small bowel biopsy will be taken in a few months. I'll see my family physician and a nutritionist soon to help with diet because of so many allergies and an underlying condition (osteoporosis) that must be monitored as well.

 

Treatment: Gluten free diet for life.  

(Can't use Dapsone because of allergies)

 

Lots of emotion when you get a diagnosis after all these years.


  • 1

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

 

 





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