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Biopsy Results - No Dh


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#1 JaneWhoLovesRain

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Posted 16 April 2012 - 03:11 PM

I admit I'm kind of disappointed. I really wanted closure to this. It states "antibodies to IgG and IgA are negative . . . level sections do not reveal evidence of dermatitis herpetiformis."

The description for the two other biopsies taken are full of big words which scare the heck out of me. I've searched them all, most I don't understand, all seem to have some sort of reference to cancer in one form or another. (She never mentioned cancer to me I'm a hypochondriac, cancer is my biggest fear, so maybe I'm just reading into things.) On the biopsy report it all points to sclerosis of some sort or an auto-immune disorder or superficial morphea. But that doesn't explain the horrid, itch rash unlike anything I have ever had before.

Now I have to go for blood work to check for lupus and things along that line and follow up with the doctor in a month. Meanwhile I have my yearly check up with my PCP in 3 weeks so I'll ask him what he thinks of all this.

Jane
  • 0
Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

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#2 IrishHeart

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Posted 16 April 2012 - 03:29 PM

Well, at least now you know it is NOT DH, but it does not answer the question of what it IS then. (and I suspect, this test may be invalid as you have been gluten-free for a year!)

And it does not exclude a gluten intolerance.

Jane, did you call and ask for an explanation of the biopsy report?

What do the words say--maybe someone here can help. Many of us have other autoimmune diseases.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 squirmingitch

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Posted 16 April 2012 - 04:22 PM

Jane, I'm so sorry. Yep, that sounds weird doesn't it? Sorry you don't have the cursed dh? Well, I'm sure you understand my drift.

Now don't go thinking you have cancer. Find out first. Yes, like IH says, you need to have the biopsies explained to you & not 3 weeks from now.
And I think cancer is the biggest fear for 90% of people. When I was growing up heart attack was the term that struck terror in your heart but now there's so much they can do in that arena & the newest terrorizing thought is the big "C".

Yes, if you post the reports here I bet someone can read them for you.
  • 0

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.

 


#4 JaneWhoLovesRain

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Posted 16 April 2012 - 04:58 PM

No, it doesn't answer at all what my problem is!!! That is still a big question mark. I had an appt this morning and she told me what the report said and then gave me a copy. She (nurse practioner) seemed kind of puzzled by it as she was reading it. It wasn't until I got home after work that I sat down and read it myself.

The main findings are
subtle spongiotic interface dermatitis
papillary dermal sclerosis
suggesive of superficial morphea
C3, C5b-9 and C4D trace granular basement membrane deposits

I wonder if these are a reaction to the rash and the damage I have probably done by scratching so hard as opposed to them being the main problem?? There is no reference as to what the rash itself could be. Later I can write out more of what it said, but right now it is 90 degrees up here where my computer is and I gotta go down where it is cool.

Thank you so much for your help, Jane
  • 0
Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

#5 pricklypear1971

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Posted 16 April 2012 - 08:00 PM

Tomorrow (when clean and on my computer instead of phone) I'll post some links I found. Mostly, I have no idea what they mean...but they are interesting.

I'm pretty sure the fact that you've been gluten-free for 4 months (right?) invalidates the test since they are looking for iga which falls quickly. INTERESTINGLY, it appears other antibodies (subsets? I am so out of my depth here) keep DH active or are present in DH but not in celiac disease (without DH). The test doesn't look for this....if I'm reading correctly.

I had read there's a very high rate of negative results on DH testing. I had read 37%, but presently can't find the link. I'll look tomorrow.

So, don't assume you don't have DH. All you know is the lab read it as negative or perhaps inconclusive. You need to read these links and ask a lot of questions.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#6 itchy

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Posted 16 April 2012 - 11:11 PM

Exactly.

If all the discussion over several years proves anything, it is that tests for DH are notoriously unreliable.

I would not assume that you do not have DH, based on tests, particularly if you have been eating gluten free for a while.

In any case labels are of limited use. If gluten free eating provides relief that is the path to take.
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#7 IrishHeart

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Posted 17 April 2012 - 05:45 AM

I would not assume that you do not have DH, based on tests, particularly if you have been eating gluten free for a while.

In any case labels are of limited use. If gluten free eating provides relief that is the path to take.



This raises the point I asked on Jane's other thread. Since gluten is the underlying mechanism of DH, if she has been gluten-free for a year, wouldn't the skin biopsy be invalid?

No one seemed to answer that question, maybe because no one saw it after I wrote it, but you raise it here and Prickly says it too and it does make me wonder. IgA antibodies deposit in the skin. If she has low levels...then????.... :unsure:

Jane,

what did the doctor say about the fact that you have been gluten-free???
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 pricklypear1971

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Posted 17 April 2012 - 10:38 AM

You might find these interesting:

http://www.ncbi.nlm....les/PMC2193738/
http://suphu.medcom....rpetiformis.pdf
http://onlinelibrary...09.03188.x/full
http://www.ncbi.nlm....2220281/related
http://anagen.ucdavi...nce/dh/van.html
http://www.arupconsu...mis.html#tabs=3

I still can't find the link to the negative test rate article. I'll keep looking. Although if you read between the lines its easy to see how there's such a high rate of negatives... medical professionals don't know how to properly biopsy it, must be on a gluten diet, and it's a "judgement" test - meaning it's subject to human error, and it the samples don't always contain the iga in the form needed to id.

*******

I was asked to add this additional info about having a rash and having a gluten issue. These are my personal observations based on my readings and experience.

1) If your rash responds to gluten, it is a gluten-related rash.
2) You can try to biopsy it, but a negative result does not mean it isn't DH or a gluten related rash.
3) Most gluten rashes have a related component: salicylates, amines, iodine, msg's, etc.
4) A gluten rash can pop up at any time.
5) Gluten rashes are trending on this board to being the FIRST sign or a LATTER sign (or both).
6) You can have more than one type gluten related rash (judging by the varying dx's on the board).
7) DH does "morph" over time. I saw it , as have many others, and this makes it very hard to dx.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#9 JaneWhoLovesRain

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Posted 17 April 2012 - 05:02 PM

I'm not 100% convinced I don't have DH (and I'm probably way in the minority in wishing I had tested positive). I've been gluten-free for a little over 2 years. The only gluten I have eaten is from cc and 3 or 4 times when I have snitched a little cookie or something (and nothing was snitched in weeks before I broke out in a rash). I've been extremely compliant. So if I do have DH I am totally perplexed as to where it could have come from so based on my diet. It makes no sense. On the other hand my symptoms match it quite nicely, bilateral, symmetric, looks like chicken pox, itches like the dickens, elbows, knees, lower back, shoulders, prickles and burns like a sunburn.

If I've been gluten-free then naturally my skin biopsy would be negative but also, if I've been gluten-free, I shouldn't even have had a dh rash. I've read as an aside the gluten-free pathology should also show neurtophiles and my report didn't mention that but did mention lymphocytes, two different things.

Tne NP never thought I had DH and wouldn't even have tested me had I not asked her to. I don't know how accurate her testing mode was. I read the specimin taken should be 3-8 mm deep, mine was 3 mm, just barely making what it should be. Even she said that she hoped she took a big enough sample. And I don't know for sure if she took it from a clean piece of skin. At my appt yesterday I didn't get into my gluten-free diet with her, I felt it was useless since she is sure I don't have it.

I'm seeing my PCP in a couple of weeks and will go all over this with him and get his take of the biopsy report. And I might do a little testing this weekend with an oreo cookie, yum-yum.

Jane
  • 0
Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

#10 JaneWhoLovesRain

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Posted 17 April 2012 - 05:09 PM

You might find these interesting:

http://www.ncbi.nlm....les/PMC2193738/
http://suphu.medcom....rpetiformis.pdf
http://onlinelibrary...09.03188.x/full
http://www.ncbi.nlm....2220281/related
http://anagen.ucdavi...nce/dh/van.html
http://www.arupconsu...mis.html#tabs=3

I still can't find the link to the negative test rate article. I'll keep looking. Although if you read between the lines its easy to see how there's such a high rate of negatives... medical professionals don't know how to properly biopsy it, must be on a gluten diet, and it's a "judgement" test - meaning it's subject to human error, and it the samples don't always contain the iga in the form needed to id.

*******

I was asked to add this additional info about having a rash and having a gluten issue. These are my personal observations based on my readings and experience.

1) If your rash responds to gluten, it is a gluten-related rash.
2) You can try to biopsy it, but a negative result does not mean it isn't DH or a gluten related rash.
3) Most gluten rashes have a related component: salicylates, amines, iodine, msg's, etc.
4) A gluten rash can pop up at any time.
5) Gluten rashes are trending on this board to being the FIRST sign or a LATTER sign (or both).
6) You can have more than one type gluten related rash (judging by the varying dx's on the board).
7) DH does "morph" over time. I saw it , as have many others, and this makes it very hard to dx.

Prickly - thank you so much for the links. I am going to print them out and read them. And thank you for added info, all vere interesting.

As you said, very often pathology results are one person's opinon. Someone else may read them differenlty. It's not always black and white. Considering all that I am reading between the lines of the report I think DH would be a piece of cake.

Thank you again for the info, it's very helpful

Jane
  • 0
Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

#11 pricklypear1971

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Posted 17 April 2012 - 05:54 PM

Prickly - thank you so much for the links. I am going to print them out and read them. And thank you for added info, all vere interesting.

As you said, very often pathology results are one person's opinon. Someone else may read them differenlty. It's not always black and white. Considering all that I am reading between the lines of the report I think DH would be a piece of cake.

Thank you again for the info, it's very helpful

Jane


In one of those links you'll find a doctor saying the antibodies can stay in your skin up to 10 years.

Yeah.

TEN YEARS.

I almost choked.

And the IgA, which is what they test for may not be all that is causing the DH. One of those studies details other antibodies present in DH Celiacs, in the skin, that are thought to be what differentiates us from regular celiac disease. And THOSE are probably what they should be testing for. But of course, they don't have a test for it for dx.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#12 squirmingitch

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Posted 17 April 2012 - 06:18 PM

Okay, this has been driving me crazy too b/c I have read at least a dozen times what Prickly is saying about needing to be eating gluten for the dh biopsy AND the reason I read that is b/c Prickly posted the links & I bookmarked them. Funny how you can miss things right in front of your eyes. I have been going through my bookmarks for hours & hours & reading & then going through them again & reading everything again. FINALLY I found them. Compliments of Prickly:


Read especially "Diagnosis of dh" AND "Diagnosis of celiac"
http://www.coeliac.o...s-herpetiformis

You will find the relevant text under "diagnosis"
http://en.wikipedia....s_herpetiformis
  • 0

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.

 


#13 pricklypear1971

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Posted 17 April 2012 - 07:23 PM

Okay, this has been driving me crazy too b/c I have read at least a dozen times what Prickly is saying about needing to be eating gluten for the dh biopsy AND the reason I read that is b/c Prickly posted the links & I bookmarked them. Funny how you can miss things right in front of your eyes. I have been going through my bookmarks for hours & hours & reading & then going through them again & reading everything again. FINALLY I found them. Compliments of Prickly:


Read especially "Diagnosis of dh" AND "Diagnosis of celiac"
http://www.coeliac.o...s-herpetiformis

You will find the relevant text under "diagnosis"
http://en.wikipedia....s_herpetiformis


Doesn't that drive you nuts?

That's ok, the first time I heard gluten-free would make a biopsy negative I didn't believe it because everything I remembered reading didn't mention it. But if you read enough, you start to find it. You don't see it mentioned a lot, but I'm noticing it more now. Maybe I'm finding better reading material?
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#14 IrishHeart

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Posted 17 April 2012 - 07:44 PM

One of the problems with the wiki article is it says "there is a strong relationship between DH and celiac" and NO citation is provided. IMHO--There is more than a "strong relationship". DH IS the skin manifestation of CELIAC.

From Celiac Disease: The Hidden Epidemic. Dr. Peter H. R. Green and Rory Jones

"DH was first described by Dr Louis Duhring in 1884, four years before Samuel Gee made sense of the "coeliac affliction". In 1967 Janet Marks of England discovered the link between intestinal biopsy and skin biopsy results of DH patients.

It is a chronic, permanent condition if not treated with a gluten-free diet.

Blood tests for celiac disease--notably endomysial antibodies (EM) and antitissue transglutaminase (tTG) may be positive or even negative in patients with DH.

The biopsy is tested for granular IgA deposits in the dermal papillae (under the top layer of skin) using direct immunoflorescence. The term granular refers to the pattern of immunoflorescence, a very specific appearance that differentiates DH from another, almost identical disease Linear IgA disease.

If you have a positive DX of DH, you have celiac disease.

Since no tests in medicine are 100% , not everyone with DH will have a positive skin biopsy. A negative biopsy should not necessarily be used to exclude the DX if the lesions look and act like DH and occur after the ingestion of gluten.

Patients should be retested.

DH biopsies for IgA are usually positive for a long time after gluten has been stopped--and become positive again within a few months of ingesting gluten. But it is unclear what dose of gluten is necessary.

Pathogenesis

It has a mutlifactorial derivation:
-a genetic predisposition
-prolonged exposure to gluten
-an immunological response

In susceptible individuals, the chronic stimulation of the immune system by gluten produces IgA antibodies that bind to the skin and CAUSE DH.

Patients with DH have a higher incidence of non-Hodgkins lymphoma but the gluten-free diet reduces the risk. They also have a higher risk of anemia, type 1 diabetes, lupus, Sjogren's, and vitiglio.
BUT -- this is also similar in patients with celiac disease--even in the absence of DH.

More than one skin condition can occur, making it confusing. There are forms of eczema that look and itch just like DH lesions and the blistering can be confused without biopsy confirmation.

DH is very erratic. Since the skin may not be rid of IgA deposits for more than 2 years after starting a gluten-free diet, flare- ups occur without obvious gluten ingestion. It may take patients a substantial amount of time to erase years of IgA buildup in the skin.



A flare could also be due to inadvertent gluten ingestion, iodine, NSAIDS. Opinions vary as to whether topical lotions and creams have ingredients that might trigger a reaction and stress may exacerbate the flares, although there is no science behind the stress link.

If the patient has DH, it may take years for it to get better."


************ Note:
If there are any typos, I apologize. (bad English Prof. :lol: ). It is very late and I am tired, but I wanted to provide this "in plain English" explanation. I have been reading some PubMed stuff that requires a medical dictionary and as Prickly and I decided earlier, there is still much to be learned from all this. My eyes are pooped. :lol:
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 pricklypear1971

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Posted 17 April 2012 - 07:55 PM

One of the problems with the wiki article is it says "there is a strong relationship between DH and celiac" and NO citation is provided. IMHO--There is more than a "strong relationship". DH IS the skin manifestation of CELIAC.

From Celiac Disease: The Hidden Epidemic. Dr. Peter H. R. Green and Rory Jones

"DH was first described by Dr Louis Duhring in 1884, four years before Samuel Gee made sense of the "coeliac affliction". In 1967 Janet Marks of England discovered the link between intestinal biopsy and skin biopsy results of DH patients.

It is a chronic, permanent condition if not treated with a gluten-free diet.

Blood tests for celiac disease--notably endomysial antibodies (EM) and antitissue transglutaminase (tTG) may be positive or even negative in patients with DH.

The biopsy is tested for granular IgA deposits in the dermal papillae (under the top layer of skin) using direct immunoflorescence. The term granular refers to the pattern of immunoflorescence, a very specific appearance that differentiates DH from another, almost identical disease Linear IgA disease.

If you have a positive DX of DH, you have celiac disease.

Since no tests in medicine are 100% , not everyone with DH will have a positive skin biopsy. A negative biopsy should not necessarily be used to exclude the DX if the lesions look and act like DH and occur after the ingestion of gluten.

Patients should be retested.

DH biopsies for IgA are usually positive for a long time after gluten has been stopped--and become positive again within a few months of ingesting gluten. But it is unclear what dose of gluten is necessary.

Pathogenesis

It has a mutlifactorial derivation:
-a genetic predisposition
-prolonged exposure to gluten
-an immunological response

In susceptible individuals, the chronic stimulation of the immune system by gluten produces IgA antibodies that bind to the skin and CAUSE DH.

Patients with DH have a higher incidence of non-Hodgkins lymphoma but the gluten-free diet reduces the risk. They also have a higher risk of anemia, type 1 diabetes, lupus, Sjogren's, and vitiglio.
BUT -- this is also similar in patients with celiac disease--even in the absence of DH.

More than one skin condition can occur, making it confusing. There are forms of eczema that look and itch just like DH lesions and the blistering can be confused without biopsy confirmation.

DH is very erratic. Since the skin may not be rid of IgA deposits for more than 2 years after starting a gluten-free diet, flare- ups occur without obvious gluten ingestion. It may take patients a substantial amount of time to erase years of IgA buildup in the skin.



A flare could also be due to inadvertent gluten ingestion, iodine, NSAIDS. Opinions vary as to whether topical lotions and creams have ingredients that might trigger a reaction and stress may exacerbate the flares, although there is no science behind the stress link.

If the patient has DH, it may take years for it to get better."


************ Note:
If there are any typos, I apologize. (bad English Prof. :lol: ). It is very late and I am tired, but I wanted to provide this "in plain English" explanation. I have been reading some PubMed stuff that requires a medical dictionary and as Prickly and I decided earlier, there is still much to be learned from all this. My eyes are pooped. :lol:


You've done a great job so far! Are you rewriting or copying?

The medical lingo makes my eyes cross. Sometimes I read a sentence and have to look up every word.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!


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