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Skin Biopsy For Dh


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#16 GF Lover

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Posted 07 November 2013 - 04:52 AM

 

 

I will say to all of you too b/c this bears repeating over & over & over again:

EATING OUT IS LIKE PLAYING RUSSIAN ROULETTE! Unless you eat at at completely gluten-free restaurant; YOU ARE PLAYING WITH FIRE!!!! And that applies if you are celiac & do NOT have dh. for those with dh it's just insane IMHO. 

 

Squirmy,

 

I am glad you said this again.  I have noticed a trend in posts of "newer" celiacs or gluten intolerants lately.  If a restaurant has a gluten free menu then It must be ok to eat there and people are flocking to eat out all the time.  I think its crazy!  You can choose a gluten free option at any restaurant, that's not the issue.  The issue is in the PREPARATION of that food in a GLUTEN KITCHEN.   Some people are not seeing this part of the equation.  Ok.  Rant over.  And what am I even doing on a DH thread? :lol:

 

Colleen


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#17 squirmingitch

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Posted 07 November 2013 - 06:32 AM

Squirmy,

 

I am glad you said this again.  I have noticed a trend in posts of "newer" celiacs or gluten intolerants lately.  If a restaurant has a gluten free menu then It must be ok to eat there and people are flocking to eat out all the time.  I think its crazy!  You can choose a gluten free option at any restaurant, that's not the issue.  The issue is in the PREPARATION of that food in a GLUTEN KITCHEN.   Some people are not seeing this part of the equation.  Ok.  Rant over.  And what am I even doing on a DH thread? :lol:

 

Colleen

You're welcome on the dh thread anytime Colleen! Why shouldn't you be here????? It's ALL celiac.

On the subject of restaurants.... SNORT! Back when hubs & I were unaware we had celiac; we would get SOOOOOOOOOO frustrated eating out! A bare minimum of 75% of the time they got something wrong with our order anyway. They couldn't do it right then!!!! There's no way we think they're going to get it right for us NOW! :o  :blink:  :ph34r:


  • 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.

 


#18 ItchyAbby

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Posted 07 November 2013 - 09:38 AM

Squirmy,

 

I am glad you said this again.  I have noticed a trend in posts of "newer" celiacs or gluten intolerants lately.  If a restaurant has a gluten free menu then It must be ok to eat there and people are flocking to eat out all the time.  I think its crazy!  You can choose a gluten free option at any restaurant, that's not the issue.  The issue is in the PREPARATION of that food in a GLUTEN KITCHEN.   Some people are not seeing this part of the equation.  Ok.  Rant over.  And what am I even doing on a DH thread? :lol:

 

Colleen

Maybe we need to have something in the Newbie thread(s) about this? (i.e. - do not trust the gluten free "options" in restaurants) The learning curve is SO steep in the beginning and the idea that you can still go out to eat like a "normal" person is all too alluring. I cried so much when I realized that I wouldn't be able to go to some of my favorite restaurants again. I'm over it now, but it was a hard pill to swallow.

 

I have a friend who has worked in restaurants for 20+ years. She said that she would not feel okay having me eat in any restaurant that was not 100% gluten free. It is exactly as Squirmy says: Roulette. (I am so very thankful that 4 - OMG! FOUR! - totally, dedicated, 100% gluten free restaurants have opened up in my town just since my dx! Did I pick the right year to get Celiac or what? :D Once I get through the #$%ing low iodine phase, I'll be checking them out more.)


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Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.


#19 LuannS

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Posted 10 December 2013 - 04:36 AM

Hello Everyone! Had the "rash" for a few weeks and have always suspected a gluten intolerance and have always tried to cut back on wheat - I know now it is all or nothing. My question is I stopped eating any gluten after Thanksgiving as the rash went/is crazy - and had the biopsy done six days later so I was only GlutenFree for six days... Is that too long to be without gluten before the biopsy? I hope I didn't mess up the results of the biopsy? I also have many thyroid problems, and was recently diagnosed with asthma! Somehow I think this these are all related. Thanks so much in advance I can't wait to get the results..
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#20 squirmingitch

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Posted 10 December 2013 - 10:48 AM

Who knows? You shouldn't have gone gluten-free at all before the biopsy. So if it's neg. then you won't know if it's neg. for real or false negative.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#21 IrishHeart

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Posted 12 December 2013 - 05:21 AM

Hello Everyone! Had the "rash" for a few weeks and have always suspected a gluten intolerance and have always tried to cut back on wheat - I know now it is all or nothing. My question is I stopped eating any gluten after Thanksgiving as the rash went/is crazy - and had the biopsy done six days later so I was only GlutenFree for six days... Is that too long to be without gluten before the biopsy? I hope I didn't mess up the results of the biopsy? I also have many thyroid problems, and was recently diagnosed with asthma! Somehow I think this these are all related. Thanks so much in advance I can't wait to get the results..

 

Some researchers say that the gluten antibodies will still be elevated enough for valid testing. And the DH rash is the

last thing to resolve off gluten --if it is, in fact, true DH.  I had rashes, but they were not typical DH blistering lesions. There are all kinds of rashes

associated with celiac and gluten intolerance.

See what happens.

 

If you suspect the test results are compromised, tell the doctor who did the biopsy to run it again.

After all, the doctor should have been the one to tell you to continue consuming gluten for a biopsy to be done correctly.

Best wishes, Let us know what happens.


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#22 squirmingitch

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Posted 12 December 2013 - 06:55 PM

Hello Everyone! Had the "rash" for a few weeks and have always suspected a gluten intolerance and have always tried to cut back on wheat - I know now it is all or nothing. My question is I stopped eating any gluten after Thanksgiving as the rash went/is crazy - and had the biopsy done six days later so I was only GlutenFree for six days... Is that too long to be without gluten before the biopsy? I hope I didn't mess up the results of the biopsy? I also have many thyroid problems, and was recently diagnosed with asthma! Somehow I think this these are all related. Thanks so much in advance I can't wait to get the results..

Luann, I want to apologize for my snarky "Who knows?" to you. I failed to notice that this was the first time you were posting. My bad & I'm sorry for that. Far too often we tell people not to go gluten-free before they get all testing done but so very many do go gluten-free anyway & then come back crying when they test negative & it's probably b/c they went gluten-free before the fact.

It still stands though that if your biopsy comes back negative then you just won't know if it's a false neg. or really negative.

If your doc didn't tell you to keep eating gluten until the biopsy then odds are the doc also doesn't know the correct way/place to take a dh biopsy. It's not like most biopsies. And he has to give the lab certain instructions. 

Well, let us know what happens.


  • 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.

 


#23 msmath

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Posted 18 December 2013 - 12:05 PM

Okay, I have a 9 year old daughter and the dermatologist told us last Thursday he suspects DH.  She was diagnosed with OCD at 6 and was thought to be an obsessive compulsive skin picker UNTIL we saw the dermatologist for plantar warts and I asked him to look at her "picking spots".

 

He said gluten free diet immediately, come back in a month, and if her spots were improved due to diet, he would biopsy two and do bloodwork for gluten allergy.  He said he was SURE this was DH.

 

Does this sound like good advice?

 

I'm trying desperately to keep her away from ALL gluten, but she's had a slip almost every day.  Yesterday was first 100% gluten-free day.  How long before the dh will improve?

 

HELP ME PLEASE!!! :o)


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#24 kareng

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Posted 18 December 2013 - 12:12 PM

Okay, I have a 9 year old daughter and the dermatologist told us last Thursday he suspects DH. She was diagnosed with OCD at 6 and was thought to be an obsessive compulsive skin picker UNTIL we saw the dermatologist for plantar warts and I asked him to look at her "picking spots".

He said gluten free diet immediately, come back in a month, and if her spots were improved due to diet, he would biopsy two and do bloodwork for gluten allergy. He said he was SURE this was DH.

Does this sound like good advice?

I'm trying desperately to keep her away from ALL gluten, but she's had a slip almost every day. Yesterday was first 100% gluten-free day. How long before the dh will improve?

HELP ME PLEASE!!! :o)

No. That is terrible advice. I would find another derm who knows how to biopsy for DH properly. They need to take the skin next to a fresh spot.


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#25 pricklypear1971

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Posted 18 December 2013 - 12:21 PM

Okay, I have a 9 year old daughter and the dermatologist told us last Thursday he suspects DH. She was diagnosed with OCD at 6 and was thought to be an obsessive compulsive skin picker UNTIL we saw the dermatologist for plantar warts and I asked him to look at her "picking spots".

He said gluten free diet immediately, come back in a month, and if her spots were improved due to diet, he would biopsy two and do bloodwork for gluten allergy. He said he was SURE this was DH.

Does this sound like good advice?

I'm trying desperately to keep her away from ALL gluten, but she's had a slip almost every day. Yesterday was first 100% gluten-free day. How long before the dh will improve?

HELP ME PLEASE!!! :o)


NO!!! The biopsy needs to done while she's eating gluten (now), and when she isn't on steroid creams/oral med (if she is...). The biopsy is a punch biopsy taken next to a lesion. It is dyed and the lab tech looks for an iga pattern - iga is the antibody celiacs produce in response to gluten. So gluten is necessary for an accurate biopsy and accurate bloodwork.

That said, you can try testing now and if + you have your answer. If -, consider a gluten challenge and retest (misery for dh sufferers).

There are meds that can be used to reduce dh eruptions, but I don't know if a young child can safely use them.

Most dh sufferers are quite sensitive to gluten - so the smallest bit could keep it active. Others have dh that is reactive to iodine - like water on a grease fire (gluten being the grease). So, some of us need to follow a low iodine diet for a while.

I think there's a basics thread on dh in the dh forum? There's definitely a newbie forum for celiac on here.
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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
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Responsive to iodine withdrawal for DH (see quote, above).

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

#26 squirmingitch

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Posted 18 December 2013 - 05:31 PM

I agree with the others. She HAS to keep eating gluten until the biopsy & Prickly said it right. 

 

Some info. on the dh biopsy & you should print it out & take it to the derm especially if you insist on seeing the derm you just saw who gave you bad information.

 

http://www.celiac.ni...Dermatitis.aspx  forget what they say about it's location on the body --- that's bunk --- we who have it can tell you it appears anywhere it darn well pleases & while it does appear where they say that's not the ONLY places it appears & not necessarily the first or most frequent places. You might want to print a copy & take it to the derm.
 
 
 
 
 
 
 
 
 
And the rash does not ALWAYS present as water filled blisters --- that happens when you've got it BAD. 
 
The use of either topical or oral steroids within 2 months prior to the biopsy will make the biopsy negative whether it truly is negative or not.
 
Also, one MUST be have been & continue to be eating a full gluten diet or outhe biopsy will turn up negative. If one is "gluten light" the biopsy will turn up negative. You can't just eat a few crackers the day or for a few days before the biopsy --- that will not work. YOU MUST BE EATING A FULL GLUTEN DIET.
 
 
These types of skin samples are collected by performing a biopsy, which involves incising tiny portions of unaffected skin positioned immediately next to reddened or blistered areas.
 
 
 
Dermatitis herpetiformis is only
diagnosed and confirmed by a
dermatologist obtaining a slight
skin biopsy from uninvolved
skin adjacent to blisters or
erosions (1, 3). Other forms of
dermatitis can mimic dermatitis
herpetiformis necessitating
skin biopsy for correct
diagnosis (4).
 
 
 
A skin sample is taken from the area next to a lesion and a fluorescent dye is used to look for the presence of Immunoglobulin A (IgA) deposits that appear in a granular pattern. or  Skin biopsies of people with DH are almost always positive for this granular IgA pattern.
 
 
 
DH is diagnosed by a skin biopsy, which involves removing a tiny piece of skin near the rash and testing it for the IgA antibody
 

  • 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.

 


#27 DHLady

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Posted 04 January 2014 - 07:41 PM

Hi there!

I was diagnosed with DH in the fall of 2010.

I just woke up with it one day.

I have been on 100 mg of Dapsone daily, since that time.  It controlled the painful rashes beautifully.

As of 1/1/14; I have stopped taking Dapsone (cold turkey) and began a gluten-free diet.

I do not suffer any of the GI symptoms associated with Celiac.

My dermatologist & primary care physician told me I had to make the change, as my red blood cells were damaged resuling in a low oxygen level as a result of taking the medication.

I know I have a long painful road ahead of me; which is why I prolonged changing my diet and getting off the Rx.

Any suggestions like the above would be greatly appreciated!  Eating on the go, meal ideas, safe costmetics, soaps and lotions, etc.

I am a very busy homemaker, wife and mother of three very active children.

I am not taking any other Rx medications and do not have any other known allergies.

I do take a daily low dose aspirin.

Looking for support in tackling this lifestyle change.  :)


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#28 kareng

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Posted 04 January 2014 - 07:45 PM

Hi there!
I was diagnosed with DH in the fall of 2010.
I just woke up with it one day.
I have been on 100 mg of Dapsone daily, since that time. It controlled the painful rashes beautifully.
As of 1/1/14; I have stopped taking Dapsone (cold turkey) and began a gluten-free diet.
I do not suffer any of the GI symptoms associated with Celiac.
My dermatologist & primary care physician told me I had to make the change, as my red blood cells were damaged resuling in a low oxygen level as a result of taking the medication.
I know I have a long painful road ahead of me; which is why I prolonged changing my diet and getting off the Rx.
Any suggestions like the above would be greatly appreciated! Eating on the go, meal ideas, safe costmetics, soaps and lotions, etc.
I am a very busy homemaker, wife and mother of three very active children.
I am not taking any other Rx medications and do not have any other known allergies.
I do take a daily low dose aspirin.
Looking for support in tackling this lifestyle change. :)

That's horrible! You were diagnosed with Celiac Disease in 2010 but no one told you the only cure is to go gluten-free until now? Sounds like malpractice to me.

Anyway, read around the forum . In the coping section is a Newbie thread that could be helpful.
http://www.celiac.co...ewbie-info-101/
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#29 DHLady

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Posted 05 January 2014 - 12:32 PM

That's horrible! You were diagnosed with Celiac Disease in 2010 but no one told you the only cure is to go gluten-free until now? Sounds like malpractice to me.

Anyway, read around the forum . In the coping section is a Newbie thread that could be helpful.
http://www.celiac.co...ewbie-info-101/

My apologies!

From day 1, I knew that the only cure for DH was to go gluten free.

I simply did not want to make the change and took the Dapsone, using it as a band-aid.

It worked like a dream for me!

I have just been prompted to pursue the gluten free diet due to side effects of the Dapsone.

Thanks for you thoughts.


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#30 squirmingitch

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Posted 05 January 2014 - 06:18 PM

This link might help you

http://www.celiac.co...ing-pain-of-dh/
  • 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.

 



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