Rash Question

[hayley3]

I have a rash that I've had on and off, for some time.  It itches like crazy, but then hurts too.  Tiny painful red bumps (some have blisters) but they are not in the specific locations I have seen in the descriptions.  If you've had the rash is it in other places besides the knees and buttocks and elbows?  I did have a rash when I initially became sick, that was below my elbows. (I thought I was allergic to the dish liquid I was using) but the doctor said I had scabies.  It lasted 12 years and now I have this rash that I thought was chiggers for years which comes and goes.  It comes back in the same place every time but is also now growing to other places.  I was wondering if anyone has had a rash on any other parts of their body besides those I listed or if the rash had changed location ever?  The last time I had this rash, I had tried some wheatgrass.   This time I am sick but was eating wheat right before I got the cold/sinus infection that has taken me 10 days to recover from.  I'm still recovering actually, but feel like it's finally easing up.

 

I'm fighting to get an appointment at the Dermatology clinic at the VA.   

 

Cheryl

[Tomislav]

Dermatitis Herpetiformis, DH, is a painful skin rash that manifests as a direct result of untreated or undiagnosed celiac disease. It is commonly known as “celiac disease of the skin" .It can also manifest below your elbows, but more often it manifests at males than females. So basically I cannot be 100% sure about what i should tell you except that you should visit a dermatologist ASAP.

[hayley3]

I really didn't want to push for them to do a biopsy, if I was way off base here.  I know most rashes are very similar, which is why dermatologists most of the time have no clue unless they do a biopsy.  I didn't know the rash was mostly in men.  Interesting.

 

Cheryl

[Tomislav]

Rashes might be caused by many things , although I wanted to ask you if u got any other symptoms besides rashes that might indicate Celiac disease?

[hayley3]

Rashes might be caused by many things , although I wanted to ask you if u got any other symptoms besides rashes that might indicate Celiac disease?

Just the stuff in my signature and if I don't eat gluten, I don't ever get sick, even with a low white blood count.  I did get an appt with the dermatologist!  Lucky break there, thanks.

 

Cheryl

[GF Lover]

Hi Haley.

 

Have you had Celiac testing? or are you pursuing a DH diagnosis.  Your a prime candidate for Celiac, rash or not.

 

Colleen

[hayley3]

Hi Haley.

 

Have you had Celiac testing? or are you pursuing a DH diagnosis.  Your a prime candidate for Celiac, rash or not.

 

Colleen

Yes Colleen, I've had testing but I was mostly gluten free for many years.  My gene came back positive (1 in 35 chance Dr said) but endoscopy only showed inflammation, other tests were negative.   I'm hoping the rash will come through for me.  I thought the rash was chiggers for a long time.  Hopefully they are prepared to biopsy it tomorrow and will do it right.   I believe there's a lot of lab mistakes/mishaps and that's why we have so many undx'd people who are ill.  I've been in limbo far too long.

 

Cheryl

[GF Lover]

Not surprising you test negative...with being mostly gluten free for so long.  Don't be disappointed if the biopsy is negative.  There can be many different rashes to get with Celiac.  It's the whole autoimmune thing.  Have you ever considered a gluten challenge?  Or is diagnosis at this point not that important to you.

 

Colleen

[hayley3]

I tested negative last December.  I've been eating a  little gluten since last October.  But I have gluten free oats in my pantry, so I really keep nothing in my house, but I ate out once a week and I did indulge in some donuts.  Slowly I ate more and more but this was after the testing.

 

A diagnosis is important to me.  I'm thinking the rash has returned because I've been eating gluten and the reason I've just caught a terrible cold which has lasted two weeks and turned into a sinus infection/bronchitis which is something that hasn't happened in 3 years.  I used to be sick constantly.  And now I remember why I stuck to the diet.  

 

And if the rash is back and it's related to Celiac, surely it would be positive?

 

Cheryl

[GF Lover]

When I say related, I mean all kinds of different rashes can show up but it may not be DH, just some kind of rash.  Since your eating gluten again now IS the time to do testing again.  Make sure the Derm knows the proper protocol for biopsying DH (must be taken from clear skin adjacent to an active sore)  If it does comes back negative, get another set of blood tests done, again, since you have been eating gluten.  2 pieces of bread for 6-10 weeks should be sufficient.  So guage if you need to eat gluten a bit longer or are set to be tested.  

 

I hope all that made sense, I'm still on my first cup of coffee 

 

Colleen

[hayley3]

When I say related, I mean all kinds of different rashes can show up but it may not be DH, just some kind of rash.  Since your eating gluten again now IS the time to do testing again.  Make sure the Derm knows the proper protocol for biopsying DH (must be taken from clear skin adjacent to an active sore)  If it does comes back negative, get another set of blood tests done, again, since you have been eating gluten.  2 pieces of bread for 6-10 weeks should be sufficient.  So guage if you need to eat gluten a bit longer or are set to be tested.  

 

I hope all that made sense, I'm still on my first cup of coffee 

 

Colleen

Thanks Colleen, I am going to make sure they are testing for DH.  Honestly just looking at the rash and comparing it to google images, I'd say it's positively DH.  Some has blisters, the rash comes back at the same place but then this time I have a new area, the bumps have that dark redness I am seeing in the pictures, and it's on both sides of my body.  The only thing I don't know is, my rash appeared but then the next day I'll see some new places, which is like poison ivy but I definitely don't have poison ivy, esp on my back. (I think...lol)

 

This is my last chance for a diagnosis.  I'm pretty sure I had the rash in 1980 and they missed it then.  And then later they said the rash on my arms is Discoid Lupus, before that they said it was something else.  Having it near my elbows in the beginning and the doctors calling it scabies is what makes me think it was DH then.     So I'm worried they will miss it again.

 

Cheryl

[hayley3]

Well there went my last chance.

They said DH is only on the knees and buttocks.  It can't be on the torso or anywhere else.  She said it looked herpetic on my leg but like bug bites on my torso.  Oh and she was also wanting to give me medicine for shingles but that's rash she thought it was bug bites.  I don't think shingles itches, it's more painful like herpes.  So that's the end for me....She refused to do a DH biopsy.

[GF Lover]

Ok.  Couple of things.  DH can be pretty much anywhere!  Singles can be extremely painful and itchy.  Your Doctor doesn't seem to be very well informed.  I guess you could always continue to eat gluten for the above mentioned lenght of time and get blood tested again.  

 

Sorry for these difficulties you are having.  You can still just eliminate gluten for life and feel better.  

 

Colleen

[appletree729]

It's only the end if you choose to make it the end

 

Go see another dermatologist and request (demand) a biopsy.  Bring in some literature with you that describes DH and the similarities between what you have and DH, the proper way to do the biopsy, etc. and use it if they question the need to biopsy.

 

Be respectful and polite and have a line on hand to say if you start feeling frustrated..  like "listen, I very much respect your opinion and knowledge on these things, but I've been suffering from this condition for many years.  Please, I'd like to respectfully request that you perform a biopsy."  And then stop talking.  It's like sales - the less you say the better.  The minute you "request" the biopsy, just shut up Put the ball in their court.  

 

In my experience, there are not many doctors that will flat out refuse a direct (and reasonable) request like this unless you keep talking and saying things like "I'm use not sure what it is…"  "do you think this looks like DH?" etc because that gives them something else to answer and to refuse to do it in an indirect way "oh..  this is not characteristic of DH, so there is no need for a biopsy"

 

If you say "I'd like to respectfully request that you perform the biopsy now".  They either have to go ahead and (reluctantly?) do it, or they have to say a direct "no" to you, which is uncomfortable.

[hayley3]

Thanks Colleen.  At this point I'm not sure what I'm gonna do.  I'm still recovering from this cold.  I'm on the 3rd week now. 

 

I've had fever blisters which is the same virus as shingles.  It does not itch until it starts to heal.  Have you had shingles and found it itchy?  What I have is excruciatingly itchy.  But if I rub those spots, it's painful too. 

 

@appletree...I think the problem was she shut me off the minute I said I would like her to do a biopsy for DH.  I even asked what does it hurt to do a 2nd biopsy, you are doing one already, why not do one to test for DH?  And she said No, and then gave me two different excuses.  First she said a DH biopsy was a special test and secondly they weren't allowed to do a DH biopsy until they did a regular one first.  I did tell them my allergist thought I had celiac disease in hopes they would take his word over mine but nope.  I don't have insurance to go to another Dermatologist.  I only have health insurance as a veteran and I have to go the Louisville, Ky VA Hospital.  Which is really the worst health insurance to have but it's health insurance.

 

That doctor was determined it was shingles; even trying to give me medicine.  I'll eat my hat if the biopsy comes back as shingles.

I've had a few biopsies over the years and half the time they come back with the wrong diagnosis though and when the biopsy is later redone it comes back with a completely different corrected diagnosis. 

 

Cheryl

[GF Lover]

Shingles can be itchy, not itchy, painful, not painful...If can manifest itself differently.  For the cold sores, look at your toothpaste, mouth wash etc. for Sodium Laural Sulfate.  Ditch it if it does and purchase one without.  Switching has helped many with cold sores including my self.  

 

Maybe it will come back as Shingles.  Then you'll have your answer.  If it isn't Shingles, you can mark it off your list and continue from there.

 

Colleen

[squirmingitch]

Cheryl,

I am so sorry this is happening to you & you have been frustrated for so long. I'm afraid I'm about to give you worse news --- News that you don't want to hear being that you want an official dx so badly. And I'm sorry I'm so late seeing your post. I usually prowl the dh forum so didn't catch this since it wasn't posted there. 

 

Geez, where to start? The VA, I'll start there. Personally I think the VA health system is crap. Why do I think this? My husband was actively being treated in the VA health system for over 20 years. They don't have a clue. IF you manage to get the extremely rare GOOD doc at a VA, they are hindered by so many stupid protocols that it's insane. The protocols almost seem designed to prevent any health care going on. I understand you don't have any other health insurance coverage so are forced to use the VA (been there, done that too). If you ever manage to get a correct dx using the VA then I'll eat my hat.

 

DH can & does present any where on your body. This elbows, buttocks, knees thing is so antiquated & short sighted!!! There are plenty of respected medical references out there that clearly state that dh can present anywhere. It seems the medical community at large reads no farther than elbows, knees, buttocks & then they slam the mind shut; they fail to read the part that says those are the most common locations. The most common locations does NOT mean the ONLY locations. Is it any wonder that this myth keeps being promulgated? If 90% of the people biopsied for dh are the ones presenting with it on their elbows or buttocks or knees, then the figures will only reflect those presenting with it on their elbows or buttocks or knees; the rest are left out of the equation. In other words, the figures are skewed & do not reflect an accurate sample of the population because the majority of derms refuse to do the biopsy of the patient presents with it on other portions of their body. 

 

A dh biopsy MUST be done correctly & all too often it is not. Generally, the derm does not even know that it is to be taken from clear skin adjacent to an active lesion. For accurate results on a dh biopsy, the patient MUST be eating a gluten containing diet the same as if they were going for the celiac blood panel or the endoscopic biopsy. If the patient has been gluten free then they will have to do a gluten challenge or the biopsy will turn up negative.

60% of celiacs who have dh test negative on the celiac blood work. They also tend to test negative on the endoscopic biopsy. A dx of dh IS a dx of celiac disease & no other tests need be performed.

 

DH can & does come & go at will whether one is eating a gluten-free diet or not. It may take 2 years or more on a strict gluten-free diet before one is free of the rash b/c the antibodies are deposited under our skin & until they go away, we suffer. It can take longer than 2 years or it can take less -- we are all individuals & it does depend on how long we went undiagnosed.

 

DH does not ALWAYS present as blisters. Go to the dh forum & read the sticky posted at the beginning.

 

Most celiacs with dh do not exhibit the extent or extremes of the GI symptoms that our fellow celiacs w/o dh do. We tend to have milder GI symptoms or none at all. The damage to our villi is patchier. 

 

Everything I've read says it's more common in men than women but that does not mean women don't have it. I can tell you there are FAR more females who have dh that post or have posted on this site than males. Perhaps this is just b/c women tend to post on public forums more than men.

[squirmingitch]

I forgot to answer one of your questions.

Can dh present in places on your body that it has not presented before? ABSOLUTELY!

 

DH can be aggravated by NSAID's. tylenol seems to be the least aggravating but Advil, Nuprin & all the rest are to be avoided.

 

DH is sensitive to iodine intake & it can cause or worsen a flare. A low iodine diet can help to keep this from happening or ramp down a flare. See thyca.org for a low iodine diet (minus the gluten of course).

[hayley3]

Shingles can be itchy, not itchy, painful, not painful...If can manifest itself differently.  For the cold sores, look at your toothpaste, mouth wash etc. for Sodium Laural Sulfate.  Ditch it if it does and purchase one without.  Switching has helped many with cold sores including my self.  

 

Maybe it will come back as Shingles.  Then you'll have your answer.  If it isn't Shingles, you can mark it off your list and continue from there.

 

Colleen

 

Thanks Colleen....Yes but it would've been much simpler for them to just do a biopsy....while I was there...ugghhhh  And the reason I had a cold sore (it was beneath my nose) was because I had been blowing my nose for two weeks due to the sinus infection.

[hayley3]

Cheryl,

I am so sorry this is happening to you & you have been frustrated for so long. I'm afraid I'm about to give you worse news --- News that you don't want to hear being that you want an official dx so badly. And I'm sorry I'm so late seeing your post. I usually prowl the dh forum so didn't catch this since it wasn't posted there. 

 

Geez, where to start? The VA, I'll start there. Personally I think the VA health system is crap. Why do I think this? My husband was actively being treated in the VA health system for over 20 years. They don't have a clue. IF you manage to get the extremely rare GOOD doc at a VA, they are hindered by so many stupid protocols that it's insane. The protocols almost seem designed to prevent any health care going on. I understand you don't have any other health insurance coverage so are forced to use the VA (been there, done that too). If you ever manage to get a correct dx using the VA then I'll eat my hat.

 

DH can & does present any where on your body. This elbows, buttocks, knees thing is so antiquated & short sighted!!! There are plenty of respected medical references out there that clearly state that dh can present anywhere. It seems the medical community at large reads no farther than elbows, knees, buttocks & then they slam the mind shut; they fail to read the part that says those are the most common locations. The most common locations does NOT mean the ONLY locations. Is it any wonder that this myth keeps being promulgated? If 90% of the people biopsied for dh are the ones presenting with it on their elbows or buttocks or knees, then the figures will only reflect those presenting with it on their elbows or buttocks or knees; the rest are left out of the equation. In other words, the figures are skewed & do not reflect an accurate sample of the population because the majority of derms refuse to do the biopsy of the patient presents with it on other portions of their body. 

 

A dh biopsy MUST be done correctly & all too often it is not. Generally, the derm does not even know that it is to be taken from clear skin adjacent to an active lesion. For accurate results on a dh biopsy, the patient MUST be eating a gluten containing diet the same as if they were going for the celiac blood panel or the endoscopic biopsy. If the patient has been gluten free then they will have to do a gluten challenge or the biopsy will turn up negative.

60% of celiacs who have dh test negative on the celiac blood work. They also tend to test negative on the endoscopic biopsy. A dx of dh IS a dx of celiac disease & no other tests need be performed.

 

DH can & does come & go at will whether one is eating a gluten-free diet or not. It may take 2 years or more on a strict gluten-free diet before one is free of the rash b/c the antibodies are deposited under our skin & until they go away, we suffer. It can take longer than 2 years or it can take less -- we are all individuals & it does depend on how long we went undiagnosed.

 

DH does not ALWAYS present as blisters. Go to the dh forum & read the sticky posted at the beginning.

 

Most celiacs with dh do not exhibit the extent or extremes of the GI symptoms that our fellow celiacs w/o dh do. We tend to have milder GI symptoms or none at all. The damage to our villi is patchier. 

 

Everything I've read says it's more common in men than women but that does not mean women don't have it. I can tell you there are FAR more females who have dh that post or have posted on this site than males. Perhaps this is just b/c women tend to post on public forums more than men.

Yes I know squirmingitch.  I think the VA used to be much better than it is now.   Even the doctors that come in from the University of Louisville, they just seem to have no desire to help figure out what's going on.  They really don't care I think. If I was a doctor, the unusual cases would intrigue me more.

 

One thing I've read about DH is, that it is symmetrical (both sides of the body), so I'm wondering does it mean that if it's on one shoulder it HAS to be on the other shoulder.  For me, it was on the backside of both legs, both sides of my torso, although not in identical proportions, but was also on my right front thigh, arm and breast.  I don't think shingles even goes that far.  And because it was prominent on my left side of the torso, she declared it shingles, when she never bothered to look at the right side.

 

I didn't know that...that even though you had the rash, you must be eating gluten for it to show up as positive.  The minute I got sick, I stopped eating anything gluten or anything that is SIBO aggravating.  Because I have SIBO, I've never been able to tell if gluten bothered me because I get GERD, constipation, sick, etc.,  after eating bread but don't know if it's the SIBO or if it could be the gluten.  My allergist (who is outside the VA) has pushed to have me genetic tested and pushed to get me the celiac tests and endoscopy because he felt I had celiac.  I had that rash on my elbows in 1983 after they removed my gallbladder, which they said was scabies.  So after doing some reading I thought, HEY!  This could be the celiac rash after all.  Because gluten-free now seems to be a fad to those who aren't sick, most doctors think we actually want to have celiac when that is not true. Who in their right mind would want to go gluten free without good reason! 

 

Cheryl

[squirmingitch]

You're right that a hallmark of dh is the symmetry and you have the symmetry but it can still appear on one side & not the other on occasion so don't think that b/c it's not ALWAYS symmetrical that means it isn't dh. Also, while it IS uncanny & mind blowing how it can echo on each side, the echo isn't ALWAYS identical in proportion. However, boy oh boy, when it is, it's simply astounding. Also, I found, sometimes it will not appear on the other side until a few days later so there is that too.

[hayley3]

I would've died if mine had been identical on both sides...yikes!

 

For years I thought I had poison ivy too, and just found out those are not poison ivy plants but boxelder saplings around my yard.   And when the rash would show up somewhere else the next day and the day after, I thought I was somehow spreading the poison ivy.  I did discover that very hot tap water was the only way to get any relief from the maddening itch but it works although drastic.

 

Cheryl

[squirmingitch]

When I had my first "all over" outbreak, I got these particular groupings on my lower abdomen directly over where each ovary lies. These were so identical in shape & size that it looked as if I was a human inkblot & had been folded in half to make the same markings on each side. Or like I had matching tattoos. it wigged me out something awful! This was before I knew it was dh. With everything else that was going on with my body (all celiac related unbeknownst to me at the time) I was sure I was riddled with cancer. When those showed up it was almost a relief ~~~ I thought my ovaries were rotting to my outer skin & I remember thinking, "at least I now know where the cancer started". Remember, I was also  heavily affected by celiac induced brain fog.

[hayley3]

I'm sure it was a relief when you figured out it wasn't cancer. 

That's kinda neat yours was an identical, mirrored image, did a doctor get to see that?  Mine sorta looked like braille dots on one side of my torso and poison ivy every where else.  I always have to be different so the docs have no clue.  lol

 

Cheryl

[squirmingitch]

No, the docs didn't get to see that, only the discolored skin it left behind which now, by this time, has disappeared.