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#1 nikaboli

 
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Posted 17 July 2012 - 01:25 PM

Hello all! I'm Nichole, and I am brand new to this forum... and this is actually my first post. (hope it's okay that it is in here)

I've been struggling with many issues for over a year, well since giving birth actually. And an intensely itchy rash has been one of them. I won't get into all my other issues here, since this section is for DH, but I'll just say this much:

I finally was "diagnosed" with Prurigo Nodularis by the dermatologist. She told me that it probably stemmed from eczema and that I would have it forever basically. Gave me a cream and said it would help itch and clear it up, but most likely it will come back?! Okayyy...well the cream, (and many other highly potent steroid creams I've tried, [hubby has eczema], haven't touched it.) So, I started doing my own research and found the above link I posted and that maybe the problem was DH. I obviously had never heard of it...and had never heard of celiac disease...or gluten for that matter. Started reading about celiac and was astonished....I had almost every symptom, masquerading as something else. I'm thinking this might be my problem...gluten/celiac. I'd like some of you to take a look at these pictures and let me know what you think, if you don't mind. :) I'm just not convinced that this is eczema....I currently have it on my left shin pretty bad, and small recovering spots on my right shin, both knees and upper back neck. I also have what feels like hives that break out in my scalp at back of head and temple region, but they don't itch nearly as bad as my legs.

I'm not sure where to go with all this...do I bother getting a diagnosis? For DH or celiac for that matter? I mean, if the only option is gluten free, then why bother? I'm not really interested in taking dapsone, IF I know that going gluten free will potentially clear it up. (btw, I have been gluten free for a week, and I know that will mess with the testing...I guess I just don't really plan on testing right now)

I guess I'm just looking for some input...and thank you for looking! Sorry this post is pretty choppy and scattered..but I only have so much time with a toddler running wild here! ;)

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#2 squirmingitch

 
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Posted 17 July 2012 - 05:25 PM

Oh you poor dear!


First Nicole, welcome to the board! And yes, it's perfectly fine that you posted here.

From reading your post you have obviously been doing your homework --- that helps so much! And it's okay to get into your other issues here --- the more you tell us the better picture we get in order to help you. It's also okay to post those things in other forums on the board but if you do then state also that you have this rash & have posted about it on the dh forum & provide a link to this post.

The big question --- is it dh? Well, IMHO it certainly is. I looked at the link you provided as well as pulling up a number of other links about "PN" & your photos don't look anything like any of the pictures of PN that I found on the net. Nor does your description of them fit. AND as you pointed out & I also read in every link I read --- PN is caused by, among other things --- DH!!!

I was shocked as your 2nd, 3rd & 4th photos so closely resemble my husbands dh!!! I have not had time yet to post his photos to the forum but it is certainly a different presentation of dh than we normally see here. And I did not get photos of my husbands while they looked quite like yours. His did that "bubbly thing" & then they erupt & weep clear, amber liquid, then crust over & that takes a long time to get rid of the crust & then the skin is a purplish color. DH can also leave white skin besides the purplish color. His presented on the top of both feet in the same spot, then on each hand in the same spot, then the lower legs mostly on the shin area & front but some on the back -- again in the symmetrical presentation.

You are presenting in the symmetrical pattern. And the intense itching is telling. And all the creams you have used to no avail. The scalp too. I get them in my scalp & yes, in the beginning mine were like hives but they became oh so much worse! As I sit here I have them over each ear where the temples of my glasses sit & they are a bear!!!!!

Read these links & they will explain much about the testing/dx process in regards to those of us with dh.
http://www.celiac.co...ike-your-input/

http://www.celiac.co...coping-with-dh/


And this thread will give you some info. on what you can use to help with the itching as well as helping it to go away faster.

http://www.celiac.co...-might-have-dh/

And you may have to go low salicylate eventually but we'll cross that bridge when & if we come to it.

This will help you with the gluten-free diet.

http://www.celiac.co...ewbie-info-101/

The only reson I would see for going for a dx is if your child ends up with suspected celiac then if you had a dx it would be easier to convince a doc to consider your child having celiac. And you may want the official dx for your child if that were the case b/c it will make things much easier at school, college & the military for that child.

And YES! dh WILL go away on a gluten-free diet. BUT it's not an overnight thing. The IgA gets in our skin & causes the rash. It can take 2 years for the IgA to leave our skin & some med. publications say up to 10 years. UGH! But the rash will get better over time on a gluten-free diet so you shouldn't be dealing with it at this level for 2 years.

Also I will mention that for places that can be covered with a band aid I & my husband have found it very helpful to put a big glob of either neosporin or the benzocaine ointment on the places & cover them with band aid. Somehow that helps greatly to keep it from itching plus serves as protection from your scratching. DO NOT scratch it please! It only makes it worse & we don't want PN!!!!
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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.

 


#3 nikaboli

 
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Posted 18 July 2012 - 06:13 AM

Wow, first of all THANK YOU SO MUCH for you wonderful welcome and reply! You have given me a lot to read and think about! In regards to my daughter, I actually am already thinking she might be dealing with it already. She hasn't been labeled failure to thrive, (altho probably should have, don't have the greatest pedi) but she hasn't gained weight since she was 18 months, and she will be two next month. She also has a lactose intolerance, or so I believe. She has always drank almond milk, as it is the only thing she can handle without getting horrible gas and diarrhea. So, you have a really good point about me going for a diagnosis myself then! I'd kind of like to just go and get a diagnosis for the DH, and then I will know. If I go and try and get a diagnosis for Celiac, A. I'll have to eat gluten again, and B. I'll still need to get a diagnosis for the DH. But, I don't trust the dermatologist that I have already seen to listen to me about the dh, so I'd llike to find one that has dealt with this before....so that should be fun! :(

Man, I hoping I can get this under control before my scalp gets worse...should I look into gluten free shampoos too? I CANNOT believe how much stuff gluten is in!! Geesh!! And wow, your hubs ( I always wanna put DH for dearest hubby but that would be really confusing in this forum ;) ..his rash sounds exactly like mine! Crazy!!
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#4 lovegrov

 
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Posted 18 July 2012 - 07:25 AM

Of course I can't diagnose you with any certainty, but those first three photos look a lot like what my DH looked like.
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#5 nikaboli

 
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Posted 18 July 2012 - 07:42 AM

I took so many pictures, and actually uploaded some of the crappier pics, because I was in a hurry. Something weird that I have noticed since quitting gluten, I've got a cold sore in my nose!? I haven't got a cold sore in a long time, because I can keep them at bay with lysine...but I guess I didn't catch this one in time. If it's not one thing, it's another! :/
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#6 squirmingitch

 
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Posted 18 July 2012 - 08:56 AM

Wow, first of all THANK YOU SO MUCH for you wonderful welcome and reply! You have given me a lot to read and think about! In regards to my daughter, I actually am already thinking she might be dealing with it already. She hasn't been labeled failure to thrive, (altho probably should have, don't have the greatest pedi) but she hasn't gained weight since she was 18 months, and she will be two next month. She also has a lactose intolerance, or so I believe. She has always drank almond milk, as it is the only thing she can handle without getting horrible gas and diarrhea. So, you have a really good point about me going for a diagnosis myself then! I'd kind of like to just go and get a diagnosis for the DH, and then I will know. If I go and try and get a diagnosis for Celiac, A. I'll have to eat gluten again, and B. I'll still need to get a diagnosis for the DH. But, I don't trust the dermatologist that I have already seen to listen to me about the dh, so I'd llike to find one that has dealt with this before....so that should be fun! :(

Man, I hoping I can get this under control before my scalp gets worse...should I look into gluten free shampoos too? I CANNOT believe how much stuff gluten is in!! Geesh!! And wow, your hubs ( I always wanna put DH for dearest hubby but that would be really confusing in this forum ;) ..his rash sounds exactly like mine! Crazy!!


I hate like heck to tell you this but EVEN for the dh biopsy you MUST be eating gluten & that means you would have to start back on gluten NOW. And THAT'S also why you see so many self dx'd with dh. There are enough self dx celiac w/o dh but WITH dh is a real bitch (pardon my expression).
Like the day I discovered what mine was --- there was NO WAY I was going to wait around for more weeks eating gluten & living in rash induced hell until I could 1) get a PC to make a referral to a derm 2) Find said derm who has experience with dh 3) wait till the appt. & biopsy. NO WAY , NO HOW!!!!!!! Knowing that we're on a long road to getting the IgA out of our skin --- we just don't want to prolong the agony!

Are you near a big city? I don't even know what country you're in. Try checking the forum here for doctors near you & see if you can come up with a good derm or even maybe a good ped GI. Perhaps it would be an easier course to find a good ped GI who has experience in celiac & take your daughter. There is a forum on here dealing with children --- check it out/post on it & see if anyone can give you some tips on that course.

Yes, gluten-free shampoos, lotions, soaps. Just put the key word in the search box here on the board & you'll find plenty of info. for those items. Personally, I use Suave shampoo & conditioner --- gluten-free --- also I understand Dove is gluten-free. Toothpaste --- Crest is gluten-free, Oral B stages (kids) is gluten-free, Crest mouthwash is gluten-free. I think Johnson's Baby Shampoo is gluten-free but double check me there on that one.

NO KISSING your hubs or boyfriend or whatever the case may be if they have eaten gluten or drank BEER or a gluten drink UNTIL they brush their teeth!!!!! Honestly, you can get glutened that way.

You're going to have to learn how to make sure you don't get cross contaminated (cc'd) especially if you have a shared household (gluten eaters as well as gluten free eaters). There is a very steep learning curve to this stuff --- very steep. But breathe, just take a deep breath & don't panic or you'll screw yourself up. As the Newbie 101 states --- whole foods are key for at least 3 months. That takes the pressure off you while you learn as well as giving your gut time to heal.

Oh, & it's possible that the thing in your nose is dh --- we've had ppl here who have gotten it there believe it or not. I've had it in the curves of my ears & inside my belly button --- it doesn't care where it strikes!

<div><br></div><div>OH! And one more thing --- a dx of dh IS a dx of celiac disease. You don't need to have both celiac dx'd AND dh dx'd.</div>
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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.

 


#7 Hopeful1950

 
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Posted 18 July 2012 - 10:31 AM

You pictures look almost exactly like my DH as well. Mine started on my shins and my upper back and because I went undiagnosed for so long, it moved up my neck into my hair in the back, my outer arms, my behind cleavage (not sure what this area is really called :) ) and the tops of my feet sometimes.

My understanding of prurigo nodularis is that it is a result of scratching something that is constantly itching (like DH). Seems like the docs just stop at the DX of prurigo nodularis without getting to the bottom of what is causing the underlying itching and skin eruptions. Even eczema has triggers that need to be identified and eliminated. Steroid creams help relieve symptoms in the short term, but can cause the skin to become fragile and thin which invites problems later.

Your pictures look like your skin is a little raised and thickened. Mine looks like this until a lesion is done erupting. Once it is done, it will flatten out completely and stop itching and heal. Then it will eventually fade often leaving a white mark behind.

I see that the others on the forum have given you great feedback. Good luck in your quest.
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#8 peter99ff

 
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Posted 19 July 2012 - 08:33 AM

Hi and welcome. I have similar break outs or continuing ones that just don't leave. I hate to throw another allergy your way. I am Celiac for umm 8 or 10 years now. My family has a history now consisting of this, Crohns, a couple other things and DAIRY. Dairy I have recently unwillingly accepted has affects of being tired (also high iron does this) and hives or breakouts similar to DH, also digestive problems. Just throwing it out there. I went dairy free this morning and feel a lot better just 7 hours in. I don't want to admit it as much as add it to the list of stay away. I'm going to Chicago for the weekend, gluten and dairy free. Try it and in a couple of hours, out of your now routine schedule, and see if it works for you. Good Luck

And research iodine and dh, if you have dh stay off iodine, that means salt, sodium etc......., go sea salt
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I can see I'm going to be on this more then my daughters on myspace

#9 FruitEnthusiast

 
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Posted 19 July 2012 - 09:22 AM

Hello all! I'm Nichole, and I am brand new to this forum... and this is actually my first post. (hope it's okay that it is in here)

I've been struggling with many issues for over a year, well since giving birth actually. And an intensely itchy rash has been one of them. I won't get into all my other issues here, since this section is for DH, but I'll just say this much:

I finally was "diagnosed" with Prurigo Nodularis by the dermatologist. She told me that it probably stemmed from eczema and that I would have it forever basically. Gave me a cream and said it would help itch and clear it up, but most likely it will come back?! Okayyy...well the cream, (and many other highly potent steroid creams I've tried, [hubby has eczema], haven't touched it.) So, I started doing my own research and found the above link I posted and that maybe the problem was DH. I obviously had never heard of it...and had never heard of celiac disease...or gluten for that matter. Started reading about celiac and was astonished....I had almost every symptom, masquerading as something else. I'm thinking this might be my problem...gluten/celiac. I'd like some of you to take a look at these pictures and let me know what you think, if you don't mind. :) I'm just not convinced that this is eczema....I currently have it on my left shin pretty bad, and small recovering spots on my right shin, both knees and upper back neck. I also have what feels like hives that break out in my scalp at back of head and temple region, but they don't itch nearly as bad as my legs.

I'm not sure where to go with all this...do I bother getting a diagnosis? For DH or celiac for that matter? I mean, if the only option is gluten free, then why bother? I'm not really interested in taking dapsone, IF I know that going gluten free will potentially clear it up. (btw, I have been gluten free for a week, and I know that will mess with the testing...I guess I just don't really plan on testing right now)

I guess I'm just looking for some input...and thank you for looking! Sorry this post is pretty choppy and scattered..but I only have so much time with a toddler running wild here! ;)

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Hi there,

I wanted to share some info about testing and treatment that may help, as I was recently diagnosed with Gluten Intolerance and have been very sick too. I don't have the skin rash part of it, but I feel for you, it looks very uncomfortable. I tested negative on the Celiac blood test and was told by my GI that the test is not very sensitive, and that not everyone tests positive even when they do have it. My other Dr. disagreed with that opinion though. The blood test would be a good option to see what comes of it. I had already stopped eating gluten, so the biopsy option was out for me as well. Regardless, gluten is obviously my problem, as I have seen dramatic results from stopping eating it. A gluten sensitivity can make you temporarily sensitive to other foods as well. I found a Naturopathic Doctor (ND) that has been more helpful than my GI in my recovery process actually, though she is unfortunately not covered on my insurance.

The other thing is that recovery is very slow for most people when they stop eating gluten, not to bum you out, but don't be surprised if that is the case for you - it is for me. Also, lotions and other products,like laundry detergent can have gluten in them, so check the labels. If you don't know what's in some of those ingredients with confusing names, you can can call the company that makes the product - lots of people do that. Some people get a reaction from contact with flour, or even breathing in the smell of baked goods. Some things to consider.

Hope this information is helpful and hope you find some relief soon!
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Sara  :)   "This life is a test. It is only a test. If it had been an actual life, you would

                             have received further instructions on where to go and what to do"

 

"If you're going through hell, keep going" :) Winston Churchill
************************************
Histamine Intolerant  Apr 2014

N C Gluten Intolerant dx Feb 2012  Also Intolerant to Rice, Eggs, Nightshades.
Gluten-Free/ Grain-free/ only whole foods prepared at home since  March 2012
Dairy, Soy, Chocolate free since Jan 2012   Sensitive to Corn and Mold since 1995
 


#10 nikaboli

 
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Posted 19 July 2012 - 12:29 PM

Thanks everyone for the great information! This morning, I was starting to feel really overwhelmed by all of it...and wanted to throw in the towel and pretend I never learned any of this! ;) I got really discouraged yesterday because I shared with a friend what I have stumbled upon, and said that I'm wondering if it's celiac. She basically told me I'm nuts and that people with celiac have sever diarrhea and lose rapid weight. Well, I've never had the problem of losing weight, but that's mainly because I am always STARVING and will eat until I'm sick. I don't have constant diarrhea, but I am always constipated, and then out of the blue will have diarrhea. Been told it's IBS. Anyway, I was starting to think I'm just crazy again. Maybe all my googling has made me crazy. But facts are facts....I've never had a regular period, I've suffered miss-carriages, (told I have PCOS) I've had almost constant canker sores since I was little, I've had countless scans and ultrasounds and dr visits trying to give me a reason for the sporadic bloating and gas pain that causes me to want to roll up into a ball, been tested for RA and OA from crippling joint pain and just told to take Meloxicam to help, (btw, I quit my 5 diet coke a day habit and the joint pain is basically gone) And I don't have to mention the DH...to me that's a dead giveaway. Anyway, my point is...I'm not crazy. I'm suffering and I want answers. But I also don't want to be seen by a doctor that will also think I'm crazy. BUT...today I think I may have found a doctor onlline that I'm willing to pay a million dollars to if she can help me!! Here is the link, check it out and see what you think:

http://www.drvanzant.com/

She isn't labeled a ND, but that's pretty close to what she is!! I'm really really excited about finding this, but now I just have to decide if I wanna make the call and go in. I just DON'T want to go back on gluten. At all. I know I'm only a week or two into this, but I don't wanna start over. :(

Also, as far as the dairy thing goes...I think I'm gonna have to ditch that too!! My coffee gives me instant diarrhea in the morning...and ice cream does the same thing. :(

And I never even thought of the thing in my nose being DH! Duh...also...I get it in my belly button and below too! And looking back, I think I've got it on my face too. I used to get "acne' that itched like a mother jumper and crusted over...just like this crazy rash!

Okay...sorry for the rambling again..and thanks so much for all your help! It's been wonderful to talk with people who don't think you are nuts!! :)
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#11 squirmingitch

 
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Posted 19 July 2012 - 03:05 PM

Everything you have described IS consistent with celiac! Your friend doesn't know what she's talking about just like so many doctors don't know. We've had umpteen hundred overweight ppl here who have been told they can't possibly be celiac b/c celiacs are skinny. THEN we've had another umpteen hundred ppl on here who are skinny who were told they are just anorexic b/c celiac is RARE. 1 in 130 ppl is NOT rare!

TRUST YOURSELF!

No one knows your body like you do --- NO ONE.

And expect lots more ppl to be skeptical & they will ask you if you have a Dr. dx. You know what? Just tell them you do. Shut them up. The riot is THEY probably have celiac & don't know it.
There is also something known as "silent celiac" where the person has NO outward symptoms at all but still the damage is being done inside them & it's real. There are a # of them on this board who found out completely by chance getting tested for something else. Furthermore, ppl with dh tend not to have GI symptoms or GI symptoms which are not severe --- that's b/c it's in our skin but our guts are still being damaged.
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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.

 


#12 eatmeat4good

 
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Posted 19 July 2012 - 04:21 PM

Oh my God, I can't believe I missed this until now.
Those are absolutely perfect pictures of DH!!!
Including the white de-pigmented skin where lesions used to be.
This is exactly what DH looks like. These pics should be in the Medical Textbooks.
Please post them in the DH photo bank thread if you haven't already.
Thank you for sharing your story and your pics.

My leg had these lesions and then my face.
But the blistery, swollen Hive-Like appearance with clusters of lesions is exactly what Celiac DH looks and presents like.
I can almost see the stinging, painful, itchy-burning sensations you must have.

You are right on with your suspicions that you have Celiac.
I'm sorry you have suffered for so long.
Please post your other pictures too, because if these are the bad ones...how perfect are the other ones?
Welcome to the forum!

I have no opinion about testing...other than I think you just diagnosed yourself and your life will start to get so much better now!
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
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#13 squirmingitch

 
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Posted 19 July 2012 - 05:12 PM

I second eatmeat's emotion. Please post your photos to the dh photo bank thread.
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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.

 


#14 nikaboli

 
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Posted 20 July 2012 - 07:05 AM

I added my pics to the photo bank thread..and few new ones. I looked through my other pics, and they basically were the same..I guess I thought I had more, and I think I did but deleted them. I don't like my nasty rash pics accidentally popping up on my phone! :P
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#15 squirmingitch

 
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Posted 20 July 2012 - 03:02 PM

I think none of us like our nasty rash pics no matter where they are stored. I had a major aversion to taking photos of my rash especially when it was at it's worst.

Very glad you posted your photos! It will help future newbies to dh. Thank you.Posted Image
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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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