Symmtery In Dh

[dani nero]

I've been reading a lot that the distribution of dh is typically symmetrical. What does that mean?

Like if it shows on the right index finger, it has to show up on the left index finger too?

My rash shows up only on one finger, but if it gets really bad then I get another patch on the back of my other hand (this happened only once), not the finger. The blisters are really tiny and it used to itch like crazy, but recently it has been burning more than itching.

[pricklypear1971]

It means typical presentation is symmetrical.

It would mean a rash would show up on both hands (not necessarily specific fingers).

You must remember not all rashes meet textbook definitions.

I have a weird rash on my right pinkie that spontaneously disappeared overnight after bothering me for almost 2 months. Last night it went "poof". My DH under my arms did the same thing. Once. Skin conditions can also evolve.

So don't get discouraged if you think your rash is caused by gluten but it doesn't fit the definitions. Skin conditions are very difficult to dx correctly. Ten docs will have ten dx'es.

[squirmingitch]

Prickly is right in every respect. I think it has a lot to do too with what stage you're in with the evolution of your dh. And by that I'm mostly speaking of the long term. When my dh first appeared years ago, I had no idea of celiac or dh & i would just get random tiny bumps or blisters on my hands. I don't remember any symmetry being involved. They were just these little slightly annoying things that appeared & then went away in a day, 2 or 3. Then they began to appear on my calves; 1 intsy blister --- always blisters on the calves but again --- only one calf would be involved or sometimes it would be bilateral. As the years went by & I got more & more in more places 90% of the time they were bilateral. Now that I'm gluten-free for a while they are not always blisters (thank heavens!) & they are bilateral only about 50% of the time.

[eatmeat4good]

Symmetrical...appearing on both sides in the same place.

However, mine was only symmetrical once.

And I have had DH outbreaks dozens of times before I knew what it was.

It isn't always symmetrical.

I hate it that they describe it that way.

It can still be DH if it isn't symmetrical.

Disheartening to think people dismiss DH because their rash is not symmpetrical as the textbook says it "typically" is. Also, they say in the medical literature it "rarely" occurs on the face. Well, it does occur on the face. My son and I have both had it on the face.

Only you can diagnose DH correctly.

If it goes away when you are gluten free, it was DH.

I went to multiple Dr.'s and Pricklypear is right.

10 Dr.'s and 10 different diagnoses.

Jeez.

[squirmingitch]

Eatmeat, YAY for that statement! I've had dh just about everywhere but "textbook" says elbows & knees. I've NEVER had it on my elbows (fingers crossed against jinx) & only a couple times on my knees. And BTW, I have had in on my face too.

[dani nero]

Thanks all of you, this was incredibly helpful :-)

[JaneWhoLovesRain]

I have not been officialy diagnosed with DH and only first heard of it a couple of weeks ago. But even before I heard of it I thought how strange that my rash is symmetrical. Both elbows, both hips, both knees. Though when it first started it was on one side of my neck only. I'm continually breaking out in new spots and it seems almost all of them have a corresponding breakout in the opposite side.

HOWEVER, even though this may sound like a "typical textbook case" the dermatologist tells me it isn't DH, but scabies. He further told me it doesn't look like DH and that DH doesn't itch (that's the first and only time I heard it doesn't itch). If this really is scabies it certainly isn't a "typical textbook case" becuase my elbows are the only spot I have it that corresponds with scabies. I don't have it in any of the other typical scabies spots.

I think that just like the intestinal version of scabies, with DH we all have variations that are our own.

[pricklypear1971]

I have not been officialy diagnosed with DH and only first heard of it a couple of weeks ago. But even before I heard of it I thought how strange that my rash is symmetrical. Both elbows, both hips, both knees. Though when it first started it was on one side of my neck only. I'm continually breaking out in new spots and it seems almost all of them have a corresponding breakout in the opposite side.

HOWEVER, even though this may sound like a "typical textbook case" the dermatologist tells me it isn't DH, but scabies. He further told me it doesn't look like DH and that DH doesn't itch (that's the first and only time I heard it doesn't itch). If this really is scabies it certainly isn't a "typical textbook case" becuase my elbows are the only spot I have it that corresponds with scabies. I don't have it in any of the other typical scabies spots.

I think that just like the intestinal version of scabies, with DH we all have variations that are our own.

I think we've all been told its scabies, at least once.

Heck, I thought it was scabies, once.

[dani nero]

I have not been officialy diagnosed with DH and only first heard of it a couple of weeks ago. But even before I heard of it I thought how strange that my rash is symmetrical. Both elbows, both hips, both knees. Though when it first started it was on one side of my neck only. I'm continually breaking out in new spots and it seems almost all of them have a corresponding breakout in the opposite side.

HOWEVER, even though this may sound like a "typical textbook case" the dermatologist tells me it isn't DH, but scabies. He further told me it doesn't look like DH and that DH doesn't itch (that's the first and only time I heard it doesn't itch). If this really is scabies it certainly isn't a "typical textbook case" becuase my elbows are the only spot I have it that corresponds with scabies. I don't have it in any of the other typical scabies spots.

I think that just like the intestinal version of scabies, with DH we all have variations that are our own.

I have completely lost faith in doctors. How on earth do they get "qualified". I'm not a doctor, I've never had scabies, yet I know what it looks like. Maybe he needs glasses!

[rosetapper23]

I wish they would do more studies on DH--the textbooks simply have all the "facts" mixed up...and in most cases absolutely incorrect. Yes, DH CAN present symmetrically, but it has been my own personal experience (and that of my son) that it can also present in a way that is NOT symmetrical. As for the DH on my face and neck, the symmetry can be uncanny--if I get a lesion on the left jawline, one in the same place appears on the other side. My facial and neck DH is ALWAYS highly symmetrical. However, sometimes I get it on the sole of my right foot and the palm and fingers of my left hand. The DH my son gets on his face and neck is also symmetrical, but he also gets DH on the sole of his left foot and the fingers and palm of his right hand (just the opposite of me). So, I wish the medical books would get updated to help people understand the different ways in which DH can present and to inform people that DH can occur anywhere on the head or body, not just on elbows and knees. From what I've read on this forum, it is extremely common on the face, neck, scalp, feet, and hands--all places where the textbooks say it can't occur or doesn't commonly occur. The medical community's lack of knowledge on this condition is shameful.

[dani nero]

I wish they would do more studies on DH--the textbooks simply have all the "facts" mixed up...and in most cases absolutely incorrect. Yes, DH CAN present symmetrically, but it has been my own personal experience (and that of my son) that it can also present in a way that is NOT symmetrical. As for the DH on my face and neck, the symmetry can be uncanny--if I get a lesion on the left jawline, one in the same place appears on the other side. My facial and neck DH is ALWAYS highly symmetrical. However, sometimes I get it on the sole of my right foot and the palm and fingers of my left hand. The DH my son gets on his face and neck is also symmetrical, but he also gets DH on the sole of his left foot and the fingers and palm of his right hand (just the opposite of me). So, I wish the medical books would get updated to help people understand the different ways in which DH can present and to inform people that DH can occur anywhere on the head or body, not just on elbows and knees. From what I've read on this forum, it is extremely common on the face, neck, scalp, feet, and hands--all places where the textbooks say it can't occur or doesn't commonly occur. The medical community's lack of knowledge on this condition is shameful.

I've read a little more about DH, and one website stated that people sometimes mistake cold sores (herpes) with DH because of the blisters.

Since I got glutened my immunity went really low, and I usually get cold sores on my lip and inside my nose when that happens. I never thought of this before but the sore on my lips never itched, but the ones in my nose always make my nose itch and they always, always, come out on the exact same spot. I always thought they were cold sores because they're incredibly painful.

Nothing is textbook with celiac. When will doctors and researchers start realizing that.

[squirmingitch]

Or at least get a new textbook!

[rosetapper23]

If there's any chance that the blisters on your lips are actually cold sores, try taking 5,000 mg of L-Lysine twice a day. Not only will they go away, they'll stay away (in 99.9% of the cases, according to studies). I used to suffer from cold sores at the drop of a hat, but I haven't had a recurrence in nine years because of the daily L-Lysine.

[eatmeat4good]

I have had DH on my lip on the edge just like herpes simplex. I have also had it inside my nose.

It sucked because hit hurt bad and never healed. The Dr. said I think you have herpes. So he tested me for herpes. Yeah right. Something like 80% have the kind of herpes that causes cold sores. So I was postive and I was put on expensive anivirals for like 4 months at $300 a month. Wow. It was just the sandwich bread for 99 cents that caused the sores. I cringe when I think of it. Coulda bought a lot of gluten free food with that $.

Here's to diagnosing your own DH. Even though the "textbook" says you shouldn't diagnose it yourself and only a professional can recogize it. OMG! I believed that statement at one time. Not anymore.

[Di2011]

I see lots of symmetry with my DH. When I got one in a nostril the other got one within hours.

On all other parts of my body I have a matter of 2-3 hours max before the other side joins in. Sometimes I can 'match' lesions - usually not more than 3-4 centimetres away from the other side, symetrically.

I actually wish it wasn't so symmetrical an 'textbook' because that might mean some part of my body could take a break (it has be 10 months!!)

[Skylark]

I used to get horribly itchy, tiny blisters on my right index finger. I thought it was whitlow herpes but after two years gluten-free I stopped getting them. The third year I would get the itch if I got CC'd but never the blisters. Now it's gone. I'm pretty sure it was DH and not herpes. I only got it on my finger, it was not symmetric, and it itched so severely I would want to scratch my skin off.

[ciamarie]

I just thought I'd throw in to the conversation, that since I've been gluten-free, when I have a flare on the back of my knees it gets itchy but at times it's more of a burning sensation; and the burning wasn't part of it at all before that. Before it was just really itchy....

[zippitty5]

Mine is symetrical about 80% of the time. The delay however can be a few days. last week my left shin was blistered and itching like crazy. This week it's just blistered and scabby (due to night time scratching) but my right shin recently got the blisters and itching.

i too have gotten it on my face. however i must say the scalp was the worst since it is very hard to treat with ointments etc.

Re: Drs and mis-diagnosis, i don't wish this on anyone but I bet a Dr would be a lot more open to non-text book cases if they or a loved one had this condition.

[missy--m]

I have had DH on my lip on the edge just like herpes simplex. I have also had it inside my nose.

It sucked because hit hurt bad and never healed. The Dr. said I think you have herpes. So he tested me for herpes. Yeah right. Something like 80% have the kind of herpes that causes cold sores. So I was postive and I was put on expensive anivirals for like 4 months at $300 a month. Wow. It was just the sandwich bread for 99 cents that caused the sores. I cringe when I think of it. Coulda bought a lot of gluten free food with that $.

Here's to diagnosing your own DH. Even though the "textbook" says you shouldn't diagnose it yourself and only a professional can recogize it. OMG! I believed that statement at one time. Not anymore.

OMG this is exactly what's happening to me! I don't know why my doctor did a blood test for herpes without a swab. A blood test like you say only confirms that I have the virus in my system like pretty much anyone else. I'm definitely getting a second opinion. Thank you!

[missy--m]

OMG this is exactly what's happening to me! I don't know why my doctor did a blood test for herpes without a swab. A blood test like you say only confirms that I have the virus in my system like pretty much anyone else. I'm definitely getting a second opinion. Thank you!

Well surprise surprise my herpes test came back completely negative, so my doctor was wrong. The search continues....it's just so frustrating! But it's comforting to hear a lot of people go through this....

[Di2011]

missy_m

Are you totally gluten free at the moment? If you aren't you probably should. You might need to get strict with your diet before you blow out. Check / test sals and iodine.

[GF4LifeinWI]

When I was first diagnosed about a year ago, I had it on my elbows (mostly just my left elbow). I would also get small blisters on my fingers. Now I get outbreaks on my face around my lips.

My best advice.....the stuff you read elsewhere on the Internet is "textbook." I have learned to come here and listen to the people who live it. Even most doctors don't know the ins and outs like the people here do. In fact, I was just talking to my dermatologist's nurse yesterday and she said, "I've never heard of it on the face before." Reading posts on this forum, you will find that it is common to have it on the face. You will also learn other things to avoid other than gluten, like NSAIDs and iodine, etc. Doctors never told me that.

I'm not trying to tell you not to listen to your doctor. I'm only saying, when you think you have no one who understands, this forum is full of people who can help.

[itchy]

You would think the symmetry would tip off the docs, because scabies wouldn't show the same type of symmetry.

When you see the complete confidence that they have as they completely misdiagnose you, it gives one pause about what they might say in more life threatening situations.

[JaneWhoLovesRain]

You would think the symmetry would tip off the docs, because scabies wouldn't show the same type of symmetry.

When you see the complete confidence that they have as they completely misdiagnose you, it gives one pause about what they might say in more life threatening situations.

Since I was "diagnosed" with scabies I've been reading up on it and surprisingly I found that it does present with a bilateral symetric rash, always, they say. And the reason is because the rash isn't coming from scabie bites as many people think it is but it is coming from fecal matter (yuk) that the scabies leave in their burrows. This is then absorbed into the blood system and a systemic allergic reaction is activated. Systemic rashes are usually bilaterally symmetric. The rash of scabies does not correlate with where the scabies are burrowing. I wish any of the 3 doctors or NP's that I have seen would have explained this to me.

I had a biopsy on Mondy but don't have results yet. She took a total of 3 samples, one for DH and two for whatever. The later two she took directly from the lesions, so if in fact it is scabies as they all think, it doesn't seem it will show from the lesion, she sould have found a burrow and taken it from that.

[itchy]

Thanks. This is an amazing forum for getting good information and correcting the bad!