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Jlewisrn

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I've been itching constantly for 7 months! I've been treated for scabies twice (I'm a a home heath nurse) and eczema. I had my second biopsy today. He said it not DH and wouldn't even test me for it when I asked about it. It's hard to tell in these pictures how it looks. These are pictires taken at different times since Jan. Including today. Taken on different parts of my body. Lower leg, upper leg (hip area) underarm. I have them in my Stomach and pubic bone too (at the pant line) 

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Strange, any idea why they won't test you for DH? Are you gluten-free?

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You said you had your second biopsy today. What happened with the first one? Where exactly were each of these biopsies taken? Were they taken ON a lesion or on clear skin adjacent to a lesion? If they were taken ON a lesion then they will not turn up as dh b/c a dh biopsy is taken on clear skin adjacent to an active lesion. It gets a special staining & the pathologist examines it for a particular patterning that indicates dh.

Are you eating some gluten every day? If you have gone gluten free, then you will get a false negative with any celiac or dh testing & have to do a gluten challenge in order to not get false negatives.

Tell us, are these rashes bilateral? Both legs, both elbows, both sides of the stomach, etc....?? Do you ever get clear blisters or is it just rash? I thought I saw some clear fluid filled blisters in 2 of the pics but the lighting in those pics is pretty dark. 

Do you have any other celiac symptoms? Do you know there are as many as 200 symptoms associated with celiac disease?

On your other thread I read that today you were given a steroid shot and steroid pills. Since you got the shot then that can throw a false negative with any form of celiac testing, be it dh biopsy or celiac serum panel or endoscopic biopsies. Same for the steroid pills. In the case of dh, the steroids usually do the trick to get rid of the rash or greatly minimize it but there's a price to pay for the relief. The vast majority of us get a rash back lash after quitting the steroids and let me tell you, it is HELL. The rash comes back worse than before. 

60% of those with dh test negative on the celiac serum panel. See:

http://www.cureceliacdisease.org/faq/what-is-dermatitis-herpetiformis-dh/

If you do get a dx of dh, no further testing is needed. A dx of dh is definitive. 

http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/

You need to find a dermatologist who knows what they're doing & has dx'd dh before. Check with local celiac support groups & see if they can recommend any terms in your area who have experience with dh.

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Find a new dermatologist! One who will test you. Properly! They don't take part of the lesion, they do it next to it, on clear skin. Wth is wrong with him that he won't do a simple test?

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4 hours ago, squirmingitch said:

You said you had your second biopsy today. What happened with the first one? Where exactly were each of these biopsies taken? Were they taken ON a lesion or on clear skin adjacent to a lesion? If they were taken ON a lesion then they will not turn up as dh b/c a dh biopsy is taken on clear skin adjacent to an active lesion. It gets a special staining & the pathologist examines it for a particular patterning that indicates dh.

Are you eating some gluten every day? If you have gone gluten free, then you will get a false negative with any celiac or dh testing & have to do a gluten challenge in order to not get false negatives.

Tell us, are these rashes bilateral? Both legs, both elbows, both sides of the stomach, etc....?? Do you ever get clear blisters or is it just rash? I thought I saw some clear fluid filled blisters in 2 of the pics but the lighting in those pics is pretty dark. 

Do you have any other celiac symptoms? Do you know there are as many as 200 symptoms associated with celiac disease?

On your other thread I read that today you were given a steroid shot and steroid pills. Since you got the shot then that can throw a false negative with any form of celiac testing, be it dh biopsy or celiac serum panel or endoscopic biopsies. Same for the steroid pills. In the case of dh, the steroids usually do the trick to get rid of the rash or greatly minimize it but there's a price to pay for the relief. The vast majority of us get a rash back lash after quitting the steroids and let me tell you, it is HELL. The rash comes back worse than before. 

60% of those with dh test negative on the celiac serum panel. See:

http://www.cureceliacdisease.org/faq/what-is-dermatitis-herpetiformis-dh/

If you do get a dx of dh, no further testing is needed. A dx of dh is definitive. 

http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/

You need to find a dermatologist who knows what they're doing & has dx'd dh before. Check with local celiac support groups & see if they can recommend any terms in your area who have experience with dh.

Yes I have small blisters on some of the areas. It is on both sides of my legs upper and lower. The right lower leg is worse and the left upper leg is worse but it's on both sides. I had more spots pop up in my underarm area (very side of my. Breast) it is also on both sides. My stomach is more in the middle. But everywhere else it's both sides. First biopsy just said dermatiis. She said it was eczema. I just don't believe thats all it is. Other symptoms are vague... constant nausea(I had that since I was very young) my comments how I was always sick to my stomach. Horrible cramps that leave me in cold sweats on the bathroom floor. This isn't all the time but often enough. I don't really have diarrhea but I went to the ER for kidney stone and the CT showed I was very cinstipated. Strange since I go everyday. I don't know what I else I may have. Kind of putting all th pieces together.

They biopsied  the actual lesion both times. I knew they weren't supposed to. I'm not taking the steroid pills until after any testing. Last time I took them several months ago it all came right back when I got off them. Im hoping the shot won't cause a false negative. My appt isn't until August 24. And I don't even know if he is going to test me for celiac. 

Oh and yes I am still eating gluten. I'm waiting until after my appt before I make any changes. 

Ill find a local celiac group.good idea. I just want this over with. It is or it isn't. I'm just over it all. I'm starting to put pieces together but feel like the doctors have a piece to finish the puzzle and they are sitting on it

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I forgot to tell you that those with dh tend to have milder, fewer GI issues than "regular" celiacs so what you're describing is right in line with dh.

You're going to have to push back on the doc & MAKE him/her test you. Remember, the doc works for YOU not the other way around. You must be very, very firm. If they say it's this or that or the other then you tell them to prove it with testing. Like when they said you had scabies, there's a test for that & I bet they didn't do it. Did they take a skin scraping & look under the microscope? I'm betting the answer is no. So the derm dx'd just on looking at it when he could have easily taken the scraping & would have seen the visual dx was WRONG. So following that line of thinking, you can tell them to take the dh biopsy & PROVE it's NOT dh.

 

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9 hours ago, squirmingitch said:

I forgot to tell you that those with dh tend to have milder, fewer GI issues than "regular" celiacs so what you're describing is right in line with dh.

You're going to have to push back on the doc & MAKE him/her test you. Remember, the doc works for YOU not the other way around. You must be very, very firm. If they say it's this or that or the other then you tell them to prove it with testing. Like when they said you had scabies, there's a test for that & I bet they didn't do it. Did they take a skin scraping & look under the microscope? I'm betting the answer is no. So the derm dx'd just on looking at it when he could have easily taken the scraping & would have seen the visual dx was WRONG. So following that line of thinking, you can tell them to take the dh biopsy & PROVE it's NOT dh.

 

Thank you. I have another dermatologist im going to go to and see if I can get different answer. Do people with DH still tear positive with the endoscope? I have an appt with the GI dr at the end of this month. Or is that different and a waste of time. Can someone have DH and not test positive for it that way? 

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Yes, people with dh still get the gut damage but it can tend to be patchier so make sure the GI understands this & URGE him/her to take 8 instead of the usual 6 biopsies. The thing is though, if you get a positive dh biopsy then you don't need an endoscopy because the dh biopsy is definitive. 

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Well the steriod shot lasted 2 days... the itching and rash is back.. maybe since it didn't last then it's not in my body and I can try to get my dr to do a blood test to check for celiac

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As of this writing I am so over a "formal" diagnosis..Feb 2, 2106 I started with a rash across my middle back extending into both shoulders (bilateral) and very VERY itchy.  At first 'notice' (2/2016) there were upwards of over 40 leisons hoovering over the entirety of my thoracic spine.  Itch so intense - took my breath away - nothing would stop it - except quickly induced sleep.  Upon waking - the damage had already been done.   I would use kitchen utensils, hair brushes, wire brushes, pumice stone - anything.   The itch is not like any other - only described as  little critter inside scratching intensely to get out and I have to get him out from my end.  Not ice, not heat, not steroids, not creams, not 100% alcohol would stop the itch...just quickly induced sleep.  (I have had 3 of my 4 kids without drugs - I can handle pain  - but not this).

By Feb 2, 2017 (one year mark of the current flare - 13 months flaring) the rash was coming out bilaterally.   It had erupted lower on my spine, on both elbows and shoulders.  With in that year there were 18 major eruption episodes.   Of those I was in the Emergency Room / Urgent Care 10 of them for stitches and medications for ...re-occuring shingles?  Unknown Excemza?   always something different but never helping.  It was the same every time - "you have to just stop itching"...like I have a choice?

By June 2017 (unknowingly I had pushed myself into remission).  I had taken a new assignment in a new city and was eating strictly vegan as it was offered and inexpensive. I also greatly increased my daily steps  and between the exercise and break in my food budget - I was happy AND in hindsight I went into remission.

In August  - feeling better than I had in a couple of years, I decided to start training for a 5 k at the holiday.  My first step was to go thru a typical cleanse - clean my body and gut and then begin a strict running daily routine.  I learned my results are better if I cleanse out my gut.   I had not had a flare or eruption in 3 months - I was so thankful for the relief.  Day 3 of the cleanse turned my life upside down....It cleansed alright - all of the stored gluten proteins in my gut and my DH was worse than it ever was.  From then on almost weekly flares up to the current writing.  I have leisons in various stages on both elbows, both shoulders both sides of my neck  all up and down my spine and 3 on my abdomen.   My anemia is too bad for the dapson and I have yet to find a doctor.

I have had 3 biopsies in September- one of them came back as basal cell sarcoma - but I had refused to have it removed because the Dermatologist who is the LEADING Expert on DH and Celiac in Tucson - dismissed me as unknown excemza and to buy 4 jars of his $50 dollar expensive cream!!  They never tested my biopsies for the DH - just the cancer.

In 9/2017 - I leveraged the cancer diagnosis to get an appointment with a primary for testing.  Simple labs showed extreme anemia (iron and B12 deficient and others).   They repeated this test 6 times in 3 weeks - same or worsening result every time  (Hemoglobin was 8.0-8.3 every time!!)    Not new to anemia and not new to blood transfusions - in addition to the rash - the anemia - brain fog - cranky (oh so cranky) - cramps - sight issues..the list goes on and on - I was clear - I need a blood transfusion or at the very least some iron infusion. The Docs kept me in a spin - two of them asked me to 'hang on and play the insurance game'!  So frustrated I began to pull my records and history together again.  Not just mine - but my family and my KIDS!    I have seen the rash on elbows and back on 2 of my adult sons :-(       I started looking at gut issues not related to my bypass because I remembered  outbreaks 20 years BEFORE my bypass.  I know now the bypass just made it worse.  I found a picture of a similar rash to what I was having and it linked me to Celiac and once I started researching gluten rash - DH matches every symptom - genetic and physical.  This epiphany struck me in early October 2017.  THEN I was certain this is DH.

I am certain of what I have.  It is classic and I can trace outbreaks back to 1983!!  I can pinpoint since that year the rash - and symptoms.  The week after meeting my now ex husband in 1987 - age 27 - doc said it was chicken pox.  8 more times documented thru June / July 2011 while vacationing in Mexico - once home I was tested for weeks for cDiff and a 'strange' rash that wouldnt go away and was extremely itchy.   Docs said thought it was some kind of 'bug' from Mexico but nothing supported that = treated me with steroids.    (Vacation - lots of Bready Goodies - no brainer here)   I am HLA-B27+ (AS) and with one auto immune - I am a genetic blood test away from genetic confirmation of Celiac.   In addition to that 10 years ago I had RNY Bypass  - which makes me a perfect storm for celiac.  I had learned to manage the gut symptoms as side effects of my bypass.  I have kept the weight off so am willing to live with those - but the itch is not a life.

Early in this new year I  tried going directly through gastro specialist.  I have been Gluten free since October, but still flaring.  He did the upper GI and took samples and wanted met to have colonoscopy to rule out crohns and other gut issues.  I never got the results of the Upper because  I refused - the other test as it involves an iodine cleanse prep  (2 bad words for someone with DH).   Iodine makes the itch worse and this latest flare hasn't stopped from the cleanse last August 2017.

Jan 24  the New Derm who claims she knew what DH was and knew how to biopsy - took a punch directly on the leison on my abdomen and 2 more on my back.   No words until 3 weeks later - wants to repeat because she took the biopsy in the wrong place and lost one of the samples.   I'm exhausted and is this really worth it??   No more skin punches or biopsies - I have to find another way of diagnosis to get the downstream help I need.

This morning I was awakened by a new set of erupting blisters between my shoulder blades.  This makes  over 100 leisons in various stages in bilateral 'patterns'  - shoulders, elbows, forearms, neck, back and I'm miserable.   I haven't mentioned the 'BURN'.   Or how they erupt.   They erupt in 3 ways..  1) an intense itch over a couple of days (leison erupts close to but never on the itch)  2) a suspicious scratch appears - doesnt hurt - but usually  turns into a line of burning leisons as it heals or 3) blister erupts - no pain, then just burns - never itches. (these usually happen on my fingers and folds of my elbows)       

Here is the bottom line - check your medical professionals carefully.  I'm certain of my diagnosis - I'm in touch with my body and know how badly I am deficient.   I am a full time working professional and am struggling with the fatigue and the itch and leisons in various stages.  I have learned to live with the gut symptoms and they are not as bothersome.  My DH has turned to skin cancer in at least one confirmed spot and 2 other suspected spots.  I will only agree to have them removed once I find a derm who can treat me for the DH - and not before.

My gut - well - I am not sure what the future holds for me with that.  As I said I have been gluten free since early October - I am mostly sticking to a Paleo diet.  Labels are my friend and with my aging eyes - its difficult sometimes to read orange letters on a red label (lol) 

I wish you luck  - education is your friend - you are already semi introduced into the medical community as a home health nurse - I'm just a computer geek and my word means garbage to the docs I have met so far.  

I live in Tucson - work in Riverside, CA - not opposed to seeing docs anywhere in between.  The medical AND Celiac community in Tucson continue to let me down.  If anyone reading this thread has a seasoned derm or hematologist or Celiac specialist anywhere  in this general area of the US - I would greatly appreciate a referral.  I have a photo journal.  Pic are from November  - you can see near both arm pits and shoulders - bilateral spine.

 

11517 3.jpg

11517 8=9.jpg

11617 2.jpg

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14 hours ago, Oniffaz said:

As of this writing I am so over a "formal" diagnosis..Feb 2, 2106 I started with a rash across my middle back extending into both shoulders (bilateral) and very VERY itchy.  At first 'notice' (2/2016) there were upwards of over 40 leisons hoovering over the entirety of my thoracic spine.  Itch so intense - took my breath away - nothing would stop it - except quickly induced sleep.  Upon waking - the damage had already been done.   I would use kitchen utensils, hair brushes, wire brushes, pumice stone - anything.   The itch is not like any other - only described as  little critter inside scratching intensely to get out and I have to get him out from my end.  Not ice, not heat, not steroids, not creams, not 100% alcohol would stop the itch...just quickly induced sleep.  (I have had 3 of my 4 kids without drugs - I can handle pain  - but not this).

By Feb 2, 2017 (one year mark of the current flare - 13 months flaring) the rash was coming out bilaterally.   It had erupted lower on my spine, on both elbows and shoulders.  With in that year there were 18 major eruption episodes.   Of those I was in the Emergency Room / Urgent Care 10 of them for stitches and medications for ...re-occuring shingles?  Unknown Excemza?   always something different but never helping.  It was the same every time - "you have to just stop itching"...like I have a choice?

By June 2017 (unknowingly I had pushed myself into remission).  I had taken a new assignment in a new city and was eating strictly vegan as it was offered and inexpensive. I also greatly increased my daily steps  and between the exercise and break in my food budget - I was happy AND in hindsight I went into remission.

In August  - feeling better than I had in a couple of years, I decided to start training for a 5 k at the holiday.  My first step was to go thru a typical cleanse - clean my body and gut and then begin a strict running daily routine.  I learned my results are better if I cleanse out my gut.   I had not had a flare or eruption in 3 months - I was so thankful for the relief.  Day 3 of the cleanse turned my life upside down....It cleansed alright - all of the stored gluten proteins in my gut and my DH was worse than it ever was.  From then on almost weekly flares up to the current writing.  I have leisons in various stages on both elbows, both shoulders both sides of my neck  all up and down my spine and 3 on my abdomen.   My anemia is too bad for the dapson and I have yet to find a doctor.

I have had 3 biopsies in September- one of them came back as basal cell sarcoma - but I had refused to have it removed because the Dermatologist who is the LEADING Expert on DH and Celiac in Tucson - dismissed me as unknown excemza and to buy 4 jars of his $50 dollar expensive cream!!  They never tested my biopsies for the DH - just the cancer.

In 9/2017 - I leveraged the cancer diagnosis to get an appointment with a primary for testing.  Simple labs showed extreme anemia (iron and B12 deficient and others).   They repeated this test 6 times in 3 weeks - same or worsening result every time  (Hemoglobin was 8.0-8.3 every time!!)    Not new to anemia and not new to blood transfusions - in addition to the rash - the anemia - brain fog - cranky (oh so cranky) - cramps - sight issues..the list goes on and on - I was clear - I need a blood transfusion or at the very least some iron infusion. The Docs kept me in a spin - two of them asked me to 'hang on and play the insurance game'!  So frustrated I began to pull my records and history together again.  Not just mine - but my family and my KIDS!    I have seen the rash on elbows and back on 2 of my adult sons :-(       I started looking at gut issues not related to my bypass because I remembered  outbreaks 20 years BEFORE my bypass.  I know now the bypass just made it worse.  I found a picture of a similar rash to what I was having and it linked me to Celiac and once I started researching gluten rash - DH matches every symptom - genetic and physical.  This epiphany struck me in early October 2017.  THEN I was certain this is DH.

I am certain of what I have.  It is classic and I can trace outbreaks back to 1983!!  I can pinpoint since that year the rash - and symptoms.  The week after meeting my now ex husband in 1987 - age 27 - doc said it was chicken pox.  8 more times documented thru June / July 2011 while vacationing in Mexico - once home I was tested for weeks for cDiff and a 'strange' rash that wouldnt go away and was extremely itchy.   Docs said thought it was some kind of 'bug' from Mexico but nothing supported that = treated me with steroids.    (Vacation - lots of Bready Goodies - no brainer here)   I am HLA-B27+ (AS) and with one auto immune - I am a genetic blood test away from genetic confirmation of Celiac.   In addition to that 10 years ago I had RNY Bypass  - which makes me a perfect storm for celiac.  I had learned to manage the gut symptoms as side effects of my bypass.  I have kept the weight off so am willing to live with those - but the itch is not a life.

Early in this new year I  tried going directly through gastro specialist.  I have been Gluten free since October, but still flaring.  He did the upper GI and took samples and wanted met to have colonoscopy to rule out crohns and other gut issues.  I never got the results of the Upper because  I refused - the other test as it involves an iodine cleanse prep  (2 bad words for someone with DH).   Iodine makes the itch worse and this latest flare hasn't stopped from the cleanse last August 2017.

Jan 24  the New Derm who claims she knew what DH was and knew how to biopsy - took a punch directly on the leison on my abdomen and 2 more on my back.   No words until 3 weeks later - wants to repeat because she took the biopsy in the wrong place and lost one of the samples.   I'm exhausted and is this really worth it??   No more skin punches or biopsies - I have to find another way of diagnosis to get the downstream help I need.

This morning I was awakened by a new set of erupting blisters between my shoulder blades.  This makes  over 100 leisons in various stages in bilateral 'patterns'  - shoulders, elbows, forearms, neck, back and I'm miserable.   I haven't mentioned the 'BURN'.   Or how they erupt.   They erupt in 3 ways..  1) an intense itch over a couple of days (leison erupts close to but never on the itch)  2) a suspicious scratch appears - doesnt hurt - but usually  turns into a line of burning leisons as it heals or 3) blister erupts - no pain, then just burns - never itches. (these usually happen on my fingers and folds of my elbows)       

Here is the bottom line - check your medical professionals carefully.  I'm certain of my diagnosis - I'm in touch with my body and know how badly I am deficient.   I am a full time working professional and am struggling with the fatigue and the itch and leisons in various stages.  I have learned to live with the gut symptoms and they are not as bothersome.  My DH has turned to skin cancer in at least one confirmed spot and 2 other suspected spots.  I will only agree to have them removed once I find a derm who can treat me for the DH - and not before.

My gut - well - I am not sure what the future holds for me with that.  As I said I have been gluten free since early October - I am mostly sticking to a Paleo diet.  Labels are my friend and with my aging eyes - its difficult sometimes to read orange letters on a red label (lol) 

I wish you luck  - education is your friend - you are already semi introduced into the medical community as a home health nurse - I'm just a computer geek and my word means garbage to the docs I have met so far.  

I live in Tucson - work in Riverside, CA - not opposed to seeing docs anywhere in between.  The medical AND Celiac community in Tucson continue to let me down.  If anyone reading this thread has a seasoned derm or hematologist or Celiac specialist anywhere  in this general area of the US - I would greatly appreciate a referral.  I have a photo journal.  Pic are from November  - you can see near both arm pits and shoulders - bilateral spine.

 

11517 3.jpg

11517 8=9.jpg

11617 2.jpg

I am so sorry that you have struggled for so long!  Let’s hope that the gluten free diet helps.  I do not have DH, so I encourage you to read through the forum DH section for tips.  

I do have some questions.  Do you have Ankylosing Spondylitis?  Is there a rash, like DH, that can be attributed to AS?  What do you mean you have a lack of the celiac community in Tucson?  Are you talking about a local support group?  Are you saying you had an endoscopy but because you refused to do a colonoscopy, the GI refused to give you the endoscopy results?  

Please know that some 35%  of the population carries the genes that could develop into celiac disease but only a few actually do.  I am not sure what you mean by “genetic blood test away from a celiac diagnosis?”  I hope you are able to get your skin cancer removed before it becomes systemic.  

Forgive me if I do not have all this down correctly.  It is late, but I wanted to reach out to you.  

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