Dermatitis Herpetiformis ... My Journey

[pricklypear1971]

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.

[sisterlynr]

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!      

[tinpins]

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

[squirmingitch]

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!

[tinpins]

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.

[squirmingitch]

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.

[tinpins]

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. 

 

Here's a good link I just found:

 

Open Original Shared Link

[squirmingitch]

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! 

[SeekingSarah]

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"
 

[squirmingitch]

Sarah, are you gluten-free?

[tinpins]

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     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 ....

[pricklypear1971]

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.

[tinpins]

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!

[squirmingitch]

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))))

[tinpins]

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    

[squirmingitch]

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

Exactly ~~~ the alternative is not an option.

[tinpins]

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 

 

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.

[pricklypear1971]

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.

[tinpins]

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 : )

[mamat78]

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. 

[tinpins]

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 

[mamat78]

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. 

[pricklypear1971]

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.

[pricklypear1971]

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?

[tinpins]

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.