Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Help Celiac.com:
    eNewsletter
    Donate

Dermatitis Herpetiformis ... My Journey


tinpins

Recommended Posts

pricklypear1971 Community Regular

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.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 175
  • Created
  • Last Reply
sisterlynr Explorer

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!     :) 

Link to comment
Share on other sites
tinpins Rookie

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:  

Open Original Shared Link

Link to comment
Share on other sites
squirmingitch Veteran

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!

Link to comment
Share on other sites
tinpins Rookie

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.

Link to comment
Share on other sites
squirmingitch Veteran

Yes, it's emotional for sure! And validating. And oh, my gosh!!!!!!!!!!!!!!!! You actually got a derm that "gets" it. You do realize since you have been gluten-free the odds are greatly stacked against the dh biopsy being positive? The same goes for the endoscopic biopsy. I hope your docs don't renig on the dx. It has happened before when biopsies come back negative. I'm thinking the derm won't since he was so savvy today.

 

You knew what you had but it's nice when a doc knows too. Congratulations tinpins! I'll lift my glass in a toast to you tonight. :)

Link to comment
Share on other sites
tinpins Rookie

Yes, it's emotional for sure! And validating. And oh, my gosh!!!!!!!!!!!!!!!! You actually got a derm that "gets" it. You do realize since you have been gluten-free the odds are greatly stacked against the dh biopsy being positive? The same goes for the endoscopic biopsy. I hope your docs don't renig on the dx. It has happened before when biopsies come back negative. I'm thinking the derm won't since he was so savvy today.

 

You knew what you had but it's nice when a doc knows too. Congratulations tinpins! I'll lift my glass in a toast to you tonight. :)

 

I'm lucky I live in a large city and have access to a top notch allergist/GP/dermatologist. I've had so many negative tests in the past that having another won't make an iota of difference to me. Life has been too miserable for the last 15 months and now I know why. Just hope my poor villi haven't suffered too much from all the torture it has endured from the gluten. 

 

My docs won't renege ... it's already written up and official. I really don't care about an official diagnosis by biopsy though ... I just want to get better and eliminating gluten is the answer. Hopefully I will toast a glass of wine to you in a few days for all the support and advice you've shared.  :wub:

 

Here's a good link I just found:

 

Open Original Shared Link

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

That link is pure GOLD! Thank YOU tinpins for finding & providing it! It's bookmarked & going in my "arsenal". I love, love, love that they say at the end:

"In 1969, it was recognized that DH could only be diagnosed by a proper skin biopsy (best performed by a dermatologist). This is analogous to celiac disease only being diagnosed by small bowel biopsies, however, it is now accepted that a skin biopsy positive for DH is simultaneously diagnostic of celiac disease without small bowel biopsies being necessary."

Perfect! Now we have one from the Canadian Medical Community! YAY! DH is celiac disease & no need for positive small bowel biopsy. Yes! Now, if we can just get docs to read, listen & pay attention to that. They seem to just hate it when we walk in telling them what we have & dx'd it ourselves via the internet & furthermore, we know more about it than they do. Egos, egos.

 

I'm so happy you have access to the docs you do! I wish everyone did. It breaks my heart to see how much grief people have to go through to try & get dx'd & the silly docs don't know & aren't willing to learn. So many dh sufferers continue to suffer by continuing to eat gluten so they can get that dx & then the derm tells them they have to have a positive blood as well as endoscopic biopsy. It makes me sick to my stomach! 

Link to comment
Share on other sites
SeekingSarah Apprentice

I even told the derm today that I was hoping for a biopsy of skin to see if it's DH before I decide whether to have an endoscopy biopsy...as in you know let's do a non-invasive office procedure before I have to go under anesthesia, etc. and STILL she brushed off the possibility it was gluten related or any REAL diagnosis of the skin rash...instead it is dx'd "other atopic dermatitis or related condition"
 

Link to comment
Share on other sites
squirmingitch Veteran

Sarah, are you gluten-free?

Link to comment
Share on other sites
tinpins Rookie

All I can say this morning for anyone coming here for advice is "listen to the elders" ... those who are sharing their long journeys and have invaluable advice to pass on.

 

10 days into my new gluten free life and there is some improvement ... so yesterday I added two new things to my rather bland diet and that really did me in. A pear and some dates. A war has been fought in my gut and my body overnight ... I don't know who won but it kept me in misery all night and all I kept thinking was thank goodness for the forum where I can go and get some help.

 

My food diary is invaluable for me to keep track of what I'm eating and I make notes of progress (e.g. no headaches). I haven't quite figured out the words I want to write to describe last night's war   :angry:  When I was up throughout the night I read a few posts that wrote exactly what I was desperately thinking "what an earth am I going to eat" ... Again, when you realize there are others on the same journey, suddenly there is hope and that's huge. For everyone who has posted helpful notes in the forum thank you.

 

Back to the misery reading room ....

Link to comment
Share on other sites
pricklypear1971 Community Regular

Oh no. Well, you're doing the right thing by keeping a food diary.

I'd be more suspicious of the date....was it treated with a preservative?

I'd try the pear, peeled, again next time (when you work up nerve).

In the beginning, weird things happen. Just keep moving forward.

Link to comment
Share on other sites
tinpins Rookie

Oh no. Well, you're doing the right thing by keeping a food diary.

I'd be more suspicious of the date....was it treated with a preservative?

I'd try the pear, peeled, again next time (when you work up nerve).

In the beginning, weird things happen. Just keep moving forward.

 

 

Not sure about the date ... it didn't look suspicious but it's out ... "my work up the nerve" is going to take a bit of reassuring : )

 

I'm on a mission right now to find "safe" foods for myself and it's quite a forest of information to wade through. I consider your input (along with other graduates from this class  : )   to be my life-line to a better place. 

 

Sure knocks the wind out of your sails!

Link to comment
Share on other sites
squirmingitch Veteran

Try cooked fruits rather than raw. Your gut may not be able to process the raw yet. Same goes for veggies ~~~ cook the heck out of them. They may not be the greatest that way but it should be easier for your gut to deal with. And; it may just be part of the roller coaster ride which can have no rhyme or reason for the first say 6 months. 

One day at a time tinpins, one day at a time.

 

((((HUGS))))

Link to comment
Share on other sites
tinpins Rookie

Try cooked fruits rather than raw. Your gut may not be able to process the raw yet. Same goes for veggies ~~~ cook the heck out of them. They may not be the greatest that way but it should be easier for your gut to deal with. And; it may just be part of the roller coaster ride which can have no rhyme or reason for the first say 6 months. 

One day at a time tinpins, one day at a time.

 

((((HUGS))))

 

:( I'm listening. (Hugs back to you)

 

Watery cabbage soup with a few rice pasta noodles thrown in and apple sauce on the supper menu today.

I'm gonna graduate from this class! The alternative isn't even an option.

What a ride  :wacko:  

Link to comment
Share on other sites
squirmingitch Veteran

One day we'll BOTH be "on the other side" of this. 

Exactly ~~~ the alternative is not an option.

Link to comment
Share on other sites
tinpins Rookie

The importance of probiotics.

 

Not sure if I should ask this here or start it in another thread.

 

My head is spinning from reading so many different opinions about probiotics  :blink:

 

Like here where there are 5 articles pertaining to this subject by Dr Art Ayers:  

Open Original Shared Link

 

or here:

Open Original Shared Link

 

I've read through some of the threads in the forum but haven't come to any conclusion.

I know I need to use a probiotic ... but which one has me a bit baffled yet.

I'd be most grateful for advice about the pros and cons.

Link to comment
Share on other sites
pricklypear1971 Community Regular

Probiotics help. Probiotic foods (naturally fermented) help more. My doctor gave me probio max plus df from xymogen ep. I would call it extremely effective, and start slowly. Half a dose per day or less, working up to one dose per day. I mix it into a shot of oj. I've taken various probiotics and none of them compare, IMO, to the xymogen.

Probiotics help repopulate your gut with good guys. Good guys help digest your food, and move things along -not to mention benefit your immune system. If I get glutened, I immediately start probiotics. If I get a stomach bug, I start probiotics. I should be on them full-time but I'm lazy. I WAS on them full time for over a year.

Link to comment
Share on other sites
tinpins Rookie

Thank you. Thank you. 

 

I've been reading these doctor's articles in particular. There's a ton of information to sift through and analyse.

 

Open Original Shared Link

Open Original Shared Link

 

and besides my diet (which was really good before the DH diagnosis) I know I have to start probiotics ... I've been reading through the forums but  ... just didn't know where to start.

 

Part of my hesitation is related to the relapse I had from eating the pears a couple of days ago. I'm still struggling to get over that and don't want to create any further agony for myself : )

Link to comment
Share on other sites
mamat78 Apprentice

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!     :) 

I took dapsone and couldnt tolerate it past 10 days (although I am 100% sure it was making a difference) and then ended up with the topical. It would help with the intense itch for  afew hours but then would be back again. It did nothing to clear the rashes. I am now on the strongest cortisone cream they will prescribe me and it has done nothing for me so far (3 days now). I have been following this thread and am so close to doing what you are Tintin and just going off of gluten but I need to get through my next dr appointment on thursday and one more round of blood tests. 

Link to comment
Share on other sites
tinpins Rookie

Within days of removing gluten from my diet the rash became less itchy. 12 days into my "no gluten for life" journey I no longer need to use extreme measures like ice packs to give me relief. The itch is lessening and the dermatologist could not find any new lesions to biopsy   :)  Plus other symptoms were alleviated almost immediately (headaches). My intestines on the other hand are a different story and are giving me lots of grief. The healing journey is my priority now. I developed osteoporosis because I didn't know I had celiac disease. I want my quality of life back and eventually I will get it. I would have given up gluten decades ago if I knew then what I know now.

 

All my tests for 40 years came back negative! If I was you I would give up gluten. Period. This is a one way journey. There's no replay button  :)

Link to comment
Share on other sites
mamat78 Apprentice

I don't know why I keep holding on to the dx of dh but I have been, even though I know what I need to do to get relief. it is not the dx, it is removing gluten from my diet! I have been reading lots about other things going on and one of them (as crazy as it is), is pulsating tinitus. When reading about it, a huge % of people are lacking B12, a common issue in celiac. All of the dots are connecting. I just need to make the final move and face it like you have :)

I will get there. 

Link to comment
Share on other sites
pricklypear1971 Community Regular

Within days of removing gluten from my diet the rash became less itchy. 12 days into my "no gluten for life" journey I no longer need to use extreme measures like ice packs to give me relief. The itch is lessening and the dermatologist could not find any new lesions to biopsy :) Plus other symptoms were alleviated almost immediately (headaches). My intestines on the other hand are a different story and are giving me lots of grief. The healing journey is my priority now. I developed osteoporosis because I didn't know I had celiac disease. I want my quality of life back and eventually I will get it. I would have given up gluten decades ago if I knew then what I know now.

All my tests for 40 years came back negative! If I was you I would give up gluten. Period. This is a one way journey. There's no replay button :)

That's probably "leaky gut". Or, the part of Celiac that is leaky gut. I found I went through stages where certain things bothered me, then they didn't. I ate junior mints like they were water....then one day, they made me violently ill. I only developed two intolerances during healing, that I can figure out: processed mint flavor and pelligrino sodas. Weird, but true.

I found healing went in stages. In the beginning you make huge strides, but develop weird quirks. Usually the quirks work out after a while. Lots of people have a temporary issue with milk...some soy, some corn.

If you are dealing with "leaky gut" you may need to adopt a food regimen that is developed to healing it. Google leaky gut, or search on this site for info.

Link to comment
Share on other sites
pricklypear1971 Community Regular

I don't know why I keep holding on to the dx of dh but I have been, even though I know what I need to do to get relief. it is not the dx, it is removing gluten from my diet! I have been reading lots about other things going on and one of them (as crazy as it is), is pulsating tinitus. When reading about it, a huge % of people are lacking B12, a common issue in celiac. All of the dots are connecting. I just need to make the final move and face it like you have :)

I will get there.

You do realize that topical steroid use (any steroid use) can give false negatives on Celiac and other autoimmune testing?

Link to comment
Share on other sites
tinpins Rookie

That's probably "leaky gut". Or, the part of Celiac that is leaky gut. I found I went through stages where certain things bothered me, then they didn't. I ate junior mints like they were water....then one day, they made me violently ill. I only developed two intolerances during healing, that I can figure out: processed mint flavor and pelligrino sodas. Weird, but true.

I found healing went in stages. In the beginning you make huge strides, but develop weird quirks. Usually the quirks work out after a while. Lots of people have a temporary issue with milk...some soy, some corn.

If you are dealing with "leaky gut" you may need to adopt a food regimen that is developed to healing it. Google leaky gut, or search on this site for info.

 

This really helps .. thank you again. Soy and corn are out for me and I'm only using fermented milk products in small doses. This is why I'm being so cautious about a probiotic ... I know I need it but I don't want to worsen the journey so I'm being careful. Well, I believe you did say earlier that DH changes your life and wow does it ever. I'm just ever so thankful I know what is wrong and can work on righting it. My dear son bought me "Gluten is my b%$@#" for my birthday tomorrow and I will enjoy reading it for the insights that I will glean. I don't feel angry though. No anger. Just gratitude that there is a solution and kind folks like you are sharing their experiences and helping me along the way to healing. I'm off to do my homework assignment now ... "leaky gut" 101.  :)

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,162
    • Most Online (within 30 mins)
      7,748

    Lenabeana
    Newest Member
    Lenabeana
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • CatherineWang
      I'm pretty sure that in stores, you can find plenty of gluten-free options. But they are usually a bit more expensive.
    • cristiana
      Hello @BunnyBrown and welcome to the forum. I cannot say that I have had the procedure you describe, but recently I did have general surgery and was routinely intubated.  That pain was what troubled me most after the operation, far more than the operation site.  It took a few days to really settle down, I was quite badly bruised. It was taking so long I was a bit concerned so asked the question on another forum. A few patients came back to me and said they had suffered the same.  I imagine in my own case possibly the throat got bashed about a bit,  maybe they had difficult inserting the tube?  I've suffered with a painful throat post-endoscopy too, but never as long as the intubation pain.   I hope you will be feeling better very soon.   PS BTW - love the name!  I saw this today in an Easter display in a shop and your name reminded me of it.🙂  
    • cristiana
      This wonderful, Anne. I think you have a point about why people disappear off forums.  I found the first few years post diagnosis a real struggle and frankly wondered if I would ever feel better (not to dishearten people, but just to say it can take a while longer for some folk to heal).  However, once my antibodies were back within normal range it really has made a big difference to my health.  I've chosen to stick around because I'm a Mod, otherwise I might have been one of those that disappeared, too!      
    • Exchange Students
      Yes absolutely, we work with all public schools and some private schools in all 50 states.
    • Scott Adams
      Just a quick question, can the host live in any state in the USA?
×
×
  • Create New...