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132 replies to this topic

#106 hmitchell

 
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Posted 13 November 2013 - 08:12 PM

These are pictures of my 4 year olds blisters 

Do they look like DH?

We have seen many Dermatologists and Allergists who said they don't know what it is but it looks like DH so we had a biopsy which came back inconclusive.

We have been Gluten free for 18 months but the spots keep coming, When she has Dairy or Soy she scratched all night even with Antihistamines.

 

http://www.flickr.co...bs/10848312076/

http://www.flickr.co...bs/10848415764/

 

I have been reading many posts and it seems the members here know more than the doctors we have been seeing.

 

if anyone can help me identify these spots I would be so grateful and relieved as the past 2 years have been super hard living with the night scratching and bleeding. 

 

worried mom 


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#107 bartfull

 
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Posted 14 November 2013 - 11:02 AM

I don't have DH, but the pictures look like it (to me). Actually, what I'm doing here is posting to bring this thread back to the top so that some of our DH victims will see it and respond. I hope you get some answers soon. (((((HUGS)))))) to you and your little one.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#108 squirmingitch

 
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Posted 14 November 2013 - 04:31 PM

I'm having major computer problems (repeatedly crashing) & am trying to fix it so I'll have to be brief. IMO that's dh!!!!!

If you had been gluten-free when the biopsy was done then OF COURSE it would come back inconclusive or negative. If the biopsy was taken directly ON a lesion then it was done wrong & OF COURSE it would not be positive for dh. Damn doctors who don't get it!!! :ph34r:  :ph34r:  :ph34r:

 

For most of us, iodine makes the rash go bonkers. It's like throwing lighter fluid on hot coals. The soy most likely has carageenan in it which is insane with iodine & milk has a lot of iodine too. Try a low iodine diet for two weeks. See http://www.thyca.org.../lowiodinediet/ for low iodine diet (of course cut the gluten). 

 

The rash can present anytime until all the antibodies are out from the skin. The antibodies get deposited under the skin for those of us with dh. So she can have the rash until they all get gone. Also, you need to be rabid about cross contamination b/c the rash is ultra sensitive to the tiniest amount of gluten.

 

Read a whole bunch of threads on here & that will be your best source of info.

NSAID's make the rash flare too.

 

If I don't crash into oblivion & can get this thing fixed then I'll be back in the next few days.

 

((((((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.

 


#109 hmitchell

 
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Posted 14 November 2013 - 06:28 PM

I'm having major computer problems (repeatedly crashing) & am trying to fix it so I'll have to be brief. IMO that's dh!!!!!

If you had been gluten-free when the biopsy was done then OF COURSE it would come back inconclusive or negative. If the biopsy was taken directly ON a lesion then it was done wrong & OF COURSE it would not be positive for dh. Damn doctors who don't get it!!! :ph34r:  :ph34r:  :ph34r:

 

For most of us, iodine makes the rash go bonkers. It's like throwing lighter fluid on hot coals. The soy most likely has carageenan in it which is insane with iodine & milk has a lot of iodine too. Try a low iodine diet for two weeks. See http://www.thyca.org.../lowiodinediet/ for low iodine diet (of course cut the gluten). 

 

The rash can present anytime until all the antibodies are out from the skin. The antibodies get deposited under the skin for those of us with dh. So she can have the rash until they all get gone. Also, you need to be rabid about cross contamination b/c the rash is ultra sensitive to the tiniest amount of gluten.

 

Read a whole bunch of threads on here & that will be your best source of info.

NSAID's make the rash flare too.

 

If I don't crash into oblivion & can get this thing fixed then I'll be back in the next few days.

 

((((((HUGS)))))))

Thank you so much for replying , thats all great information.

We have been Gluten free but I have only recently learnt about Iodine so we are going to try that too.

Reading all the info on here I know now that her biopsy was a joke as they took a sample from a young blister, we were gluten-free....and now she has a scar on her arm for nothing :-(

 

How long do you think it takes the Antibodies to get out of the skin ? 

 

Has anyone tried topical Dapson? is it worth trying on her ? at the moment I'm using a strong steroid cream on the very inflamed spots.

reading the horrible side effects i don't think i will ever put her on the drug but maybe try the topical, is it just as bad ?

 

 

We are also about to receive the results of a stool test and the dr said there is something not right going on there (our appointment is on Tuesday)

 

 

Thank you all again for replying and for the wealth of information you are sharing 


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#110 squirmingitch

 
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Posted 14 November 2013 - 07:50 PM

Ohhhhhh, nooooooo, steriods, topical or oral are no nono !!!!!! Especially the oral!!!!!! They will help a lot but the second the steroids are withdrawn the rash will punish in SPADES!!!!! You don't want to put her through that hell.

This stuff is a bitch!!!!

It can take 2 years or more for the antibodies to get out of the skin. We are all individuals & there is truly no set time. I'm sorry. So very sorry to tell you that but .......

I'm coming up on 2 years sooooooo strict gluten-free on Dec. 1st & I'm still having the rash BUT I'm 3000 times better than I was.

Dapsone..... is she allergic to sulfa drugs? Dapsone is in the sulfa class. There are many side effects. Blood monitoring should be done. It can make her anemic. Do your research before you decide to do that. 


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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 hmitchell

 
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Posted 15 November 2013 - 05:05 PM

Every dermo we have been to just prescribed Steriods (or eladel, protopic or other crap )each time stronger and stronger ones, and no one knew what is was and one even thinks its papular eczema..... 

I have not given her oral steroids as she is too small for such aggressive drugs which is why I don't think I can give her oral dapsone. which is why i was asking about the topical, if it helps etc ..

 

but for now we are gluten-free, Dairy free, soy free ,Low iodine, and corn and nut free.

 

she was drinking almond milk but i noticed she is better without it  

 

wishing you all good health 

 

thank you again !!!


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#112 squirmingitch

 
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Posted 15 November 2013 - 06:39 PM

I think I've seen 2 postings on here (the dh forum) where ppl used the topical Dapsone (Actone? or something) & if I remember correctly, 1 said it helped & 1 said it didn't. You can give it a go & see.


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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.

 


#113 sisterlynr

 
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Posted 19 November 2013 - 07:39 PM

I asked my dermatologist about Aczone but since I was allergic to sulfa, said I couldn't tolerate it.

 

From what I read it takes several weeks to ease the rash. .. like 2 - 3 months.  Posting a web site if ok with the moderators?

 

http://www.aczone.com


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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~


#114 RNGayle

 
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Posted 24 January 2014 - 09:23 AM


This is a more recent picture of how the rash developed since the previous pictures. I now get reddish patches with dry flaky skin that appear before, with, and after the blisters. They don't show very well in the pic however due to being lubricated:

http://rainytown.se/...0622_135205.jpg

 

I don't have any pics but your rash looks exactly like a recurring one I had when I was in high school/college and beyond.  I'm 48 now.  I have been gluten free for 6+ months now and I seem to be getting some skin issues from cross-contamination.  My scalp has become itchy, especially around the hair line and the back of my ears.  Weird.  Also, although it's cleared up now, I had a patch of eczema on my chest that itched like blazes--again, probably due to cc.


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#115 electrolyteman

 
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Posted 26 January 2014 - 10:23 AM

the 3rd photo is pretty much what mine look like. I was calling them hives but I guess not. To me this is as good as a blood test.I

My rash looked exactly the same.  I decided to start eating gluten again after 6 years off and the same rash appeared - after eating gluten for one month.  It is an awful rash.  It takes the strongest topical steroids to get relief.  I will resolve itself after about 8 weeks of not eating gluten.


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#116 carebearblues

 
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Posted 27 January 2014 - 08:54 PM

Hi. I'm new here to the forum. I can't thank you enough for sharing these pictures of your DH. I have been suffering for 4 yrs (Oct 2010) with this horrible itching and sores. I was told in 2011 that I had the Celiac Gene in my DNA but I didn't have Celiac Disease. They said I had IBS and dry skin instead. This came from the top doctors in the state. I too have had this clear liquid in these itchy sores and they come open on their own. Especially in the shower, I find my skin will just slide off of the sore. Sorry, I know that is extremely gross. I just want to share my story too so that it might help someone else. The dermatologists keep saying it's nerves, then they change their minds that it is an immune problem. I have stumped them is the conclusion after three and half years of treatment, numerous creams and lotions and pills, and biopsy's. After seeing your pictures, I am feeling relieved somewhat. I have been going insane trying to figure out what this is driving me mad for so long. Thank you for sharing. Now, I can stop trying to figure out what it is and go with what I have always thought it was in the first place DH. (I even had a total hysterectomy because they said it was hormones and I was pre-menopausal). I am beginning to realize that I know my body more than any doctor does. I can't expect them to know everything and I have to help myself. Even though the doctors have said that I don't have Celiac Disease, I am going to go gluten free and learn from all of you my fellow forum friends through your posts. I'm glad I found this forum and maybe someday I will share my pictures on here too. My body is horrible with sores and scars to the point I feel like a monster right now. I promise I will take the pictures now and put them away for a time when I feel I can share them on here to help others. Looking forward to reading and sharing, thanks. :)  P.S. It seems that Yeast and Vinegar might be two of my main triggers for a flare up of bumps.


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#117 squirmingitch

 
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Posted 28 January 2014 - 01:14 PM

Big hugs to you sweetie! (((((HUGS)))))) If they did a celiac blood panel on you --- 60% of us with dh test false negative on the blood panel -- that's b/c the antibodies are in the skin (causing our dh - DUH!). And unless the skin biopsies were specifically looking for dh & NOT done right ON TOP OF a lesion then that's why they didn't know what it was. Read, read, read as many of these threads both on the dh forum & the other forums.

 

This will help you get started on being gluten free:

 

Newbie 101 for celiacs
 

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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.

 


#118 MGR

 
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Posted 29 January 2014 - 05:35 AM

I think I am one of those people squirmingitch describes- I am still a half diagnosed celiac... I have already posted in other threads about my case, please excuse me if I am repeating myself.... After havering been on a gluten challenge for 8 weeks I went for an endoscopy, and the endoscopist saw mild scallopings in my intestine and said I was celiac- however my blood tests and biopsies were negative and another specialist told I wasn't - it turns out I also get skin lesions which look very much like DH- not very badly but I get them on my scull, neck back of legs feet, etc. get also flare up any time I ingest the smallest particle of gluten.... Although I have mentioned this to the doctors, they are not interested....

I have not had a formal diagnosis because I probably would have to do another challenge and I don't feel like doing this because I already had a horrendous reaction with my first one I fear I will die if I do a second one as I have been Gluten free since November.....
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#119 squirmingitch

 
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Posted 29 January 2014 - 06:32 AM

MGR, If I were you, I would call myself celiac & go with the endo report which says you are & screw the specialist who says you aren't. Who is to challenge you especially if you have the endo report? Sounds like you surely have dh & that's throwing everything off as far as blood panel. The damage in our intestines tends to be patchier than celiacs w/o dh so the biopsies can be tricky to get too.

 

As we say....... If it makes you sick, don't eat it.


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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.

 


#120 MGR

 
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Posted 29 January 2014 - 09:18 AM

MGR, If I were you, I would call myself celiac & go with the endo report which says you are & screw the specialist who says you aren't. Who is to challenge you especially if you have the endo report? Sounds like you surely have dh & that's throwing everything off as far as blood panel. The damage in our intestines tends to be patchier than celiacs w/o dh so the biopsies can be tricky to get too.
 
As we say....... If it makes you sick, don't eat it.


Thanks so much for your reassurance- This is precisely what I am doing, I'm not doing any more challenges just for their sake... I am actually quite tired of the doctors' s lack of imagination and insensitivity ...
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