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Dermatitis Herpetiformis ... My Journey

dernatitis herpetiformis

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175 replies to this topic

#31 squirmingitch

 
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Posted 16 May 2013 - 04:25 PM

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. :)


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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.

 


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#32 tinpins

 
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Posted 16 May 2013 - 04:49 PM

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:

 

http://www.celiac.ca...n-itch-to-know/


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

 

 


#33 squirmingitch

 
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Posted 16 May 2013 - 05:44 PM

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! 


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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.

 


#34 SeekingSarah

 
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Posted 16 May 2013 - 05:53 PM

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"
 


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#35 squirmingitch

 
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Posted 16 May 2013 - 05:55 PM

Sarah, are you gluten-free?


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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.

 


#36 tinpins

 
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Posted 18 May 2013 - 03:02 AM

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 ....


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

 

 


#37 pricklypear1971

 
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Posted 18 May 2013 - 06:58 AM

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.
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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!

#38 tinpins

 
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Posted 18 May 2013 - 07:41 AM

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!


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

 

 


#39 squirmingitch

 
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Posted 18 May 2013 - 10:02 AM

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))))


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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.

 


#40 tinpins

 
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Posted 18 May 2013 - 10:52 AM

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:  


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

 

 


#41 squirmingitch

 
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Posted 18 May 2013 - 11:20 AM

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

Exactly ~~~ the alternative is not an option.


  • 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.

 


#42 tinpins

 
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Posted 19 May 2013 - 04:23 AM

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:  

http://coolinginflam...label/probiotic

 

or here:

http://www.judytsafr...escript-assist/

 

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.


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

 

 


#43 pricklypear1971

 
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Posted 19 May 2013 - 10:40 AM

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.
  • 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!

#44 tinpins

 
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Posted 19 May 2013 - 11:58 AM

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.

 

http://coolinginflam...autoimmune.html

http://www.judytsafrirmd.com

 

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 : )


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

 

 


#45 mamat78

 
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Posted 19 May 2013 - 12:26 PM

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. 


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