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Dermatitis Herpetiformis ? Pics Inside


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#1 Azalin

 
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Posted 14 April 2013 - 12:31 AM

Hey guys, thought I would share my story here, new comer and all. I apologize for it being lengthly. First off I am a 30 year old male.

 

First off I believe I have Celiac Disease considering I took Accutane when I was a teenager. I continued to take a low dosage of Accutane  for years as my doctor thought it would be a good idea ( 1 x 40 mg pill every 4 days ). It made my skin flawless, however if I stopped, I got a rash across my forehead, and my nose would break out. We both thought it was a bought of Rosacea since I am a very light skinned person, and small dose of Accutane is good to combat this.

 

Just a year and a half ago I started having stomach problems. One day I just felt a little sick to my stomach and then I could not have a bowel movement for roughly 2 weeks. Doctor gave me some Senna pills and stool softners and said I should be OK. Well I ended up taking Metamucil and that worked perfectly. I began taking Metamucil everynight before bed, and as long as I did that my bowel movements were perfect. I also stopped taking accutane for about 7 months as I blamed my stomach issues to this product.

 

Unfortunately the " rosacea " rash on my forehead came back. I tried all kinds of cleansers, acne medication, hydrocorisone cream and some antibiotics my doctor gave me thinking it was something else. All that failed. After 7 months of dealing with it, I went back on my Accutane regimen and of course the rash went away and my skin was back to perfect.

 

About a year later ( just 4 weeks ago ) I went to the gym and upon coming home had myself an egg sandwich. I felt really ill after, nauseaed and gassy which sometimes happens since I had the stomach issues, so I didn't think anything of it. I took my Metamucil as always but no bowel movements the next day. It had been 1 week of feeling sick and no bowel movements when I decided to start looking for answers. I quit Accutane again and of course the rash came back. My doctor was on holidays so I have had to wait 4 weeks now to see him, my appointment is on April 18th.

 

Looking over the symptoms of Celiac Disease, I believe this is what I have. The rash and the severe constipation is what I feel gives it away. However, I don't really have any of the other symptoms. I have always had very strange sleeping schedules my whole life, and fatigue is always off and on, so that is hard to pinpoint. I don't have any pain or sore joints that I notice, but I am an avid running and body builder, so I am use to muscle fatigue. I have always ate a lot of gluten and it has never really bothered me until just 3 weeks ago, which I do find kinda off. I have since started a gluten free diet, but did splurge tonight as I had 4 pieces of pizza with a friend, however ironically I don't feel too bad. The rash on the other hand looks a bit worse. I have looked for pictures of DH online and think the pics I have look very similar, although I don't notice many people having it on their forehead. The pics are linked below. If anyone has any insight to this, it would be greatly appreciated.

 

http://s26.photobuck...html?sort=3&o=0

 

http://s26.photobuck...html?sort=3&o=1

 
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#2 IrishHeart

 
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Posted 14 April 2013 - 04:49 AM

I honestly think you should remain on gluten and have a celiac panel blood test done.

No offense, but  rashes are not necessarily DH. I had all sorts of rashes and red spots, intense itching, scalp peeling and sores on my face and scalp, etc. before my diagnosis, but it was not DH.  (For example, I have one now but it's not gluten-related at all.)

 

OR you could have an allergy to something (which is quite different from celiac)

 

DH is an oozing, blistering, intensely itchy and painful rash (those with it report it being "maddening") and I am not sure that's what you are dealing with here (just by looking at your pictures). But I'm not a doctor (none of us are on here) and you should have it checked by a knowledgeable dermatologist or allergist.

 

However, you could very well have celiac and you want to have your testing done while you are still consuming gluten.

 

I do not know what you mean by saying "First off I believe I have Celiac Disease considering I took Accutane when I was a teenager".

.

Taking accutane does not "give you" celiac. There is only one study of Accutane saying it "MAY" trigger an inflammatory reaction in people with celiac disease.

 

 

"With much attention focused on the acne drug Accutane’s side effects, new research suggests that a byproduct of vitamin A, retinoic acid, may activate an inflammatory reaction in those individuals with celiac disease. Isotretinoin, the drug marketed as Accutane, is 13 cis-retinoic acid and is related to both retinoic acid and retinal (vitamin A). What does this mean for Accutane patients? Not much unless you already suffer from celiac disease, according to an article by Richard Burke, from the Accutane Lawsuit Center.The medication does not appear to cause the disease but because it is related to retinoic acid it may exacerbate the condition"

 

The research was published in the journal Nature on February 9, 2011 and was conducted at the University of Chicago.

 

Find out for sure what's causing your rash by consulting an allergist or a dermatologist and by asking your doctor for a celiac panel. IMHO


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"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 Azalin

 
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Posted 14 April 2013 - 09:44 AM

Thanks for the information and the opinion IrishHeart. I honestly hope you are right. I did more research on Acctuane and some scientists are saying it could possible cause Celiac Disease, others say it just causes the symptoms, but when you stop they go away  ( Accutane can exist in the system for several months, so it could take a bit. ) 

 

I think I am done with Accutane, and I might as my doctor for Retin-A which doesn't have any of these scary side effects. I am an extremely vain individual, if I see any flaws in my school I get depressed pretty easily, it sucks. Further more, I will continue to eat gluten this week, and then see my Doctor on thursday. I hate just walking in and saying " Well, I think I have Celiac Disease " and soundling like a hypochondriac but I don't see any other way to get the point across. I will update the post with his professional opinion.

 

P.S - If anyone has anything else to add, feel free. The more the merrier :-D.


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#4 squirmingitch

 
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Posted 14 April 2013 - 09:46 AM

I would add that you should be actively eating gluten for the celiac panel. The top celiac centers say you should be consuming 2 - 4 slices of gluten bread or 2 bowls of gluten pasta per day for (& the time varies) 6 - 8 weeks before having the celiac blood panel. There are false negatives but not false positives & you want to make sure you do everything you can to ensure an accurate test result. So eat up that gluten starting now & don't get tested for at least 6 weeks --- IMHO. 

Furthermore, if you have been taking oral steroids of any kind in the last 2 months then it can result in a false negative.

 

Here is the current FULL celiac panel. if your Dr. does anything less than this then he has not given you the correct testing.

Make a copy of this & take it to your doctor & be your own health advocate -- do not be shy.

 

 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 
 
The DGP test was added recently to the full panel.
 
 
Also can be termed this way:
 
Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

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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.

 


#5 IrishHeart

 
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Posted 14 April 2013 - 10:36 AM

Thanks for the information and the opinion IrishHeart. I honestly hope you are right. I did more research on Acctuane and some scientists are saying it could possible cause Celiac Disease, others say it just causes the symptoms, but when you stop they go away  ( Accutane can exist in the system for several months, so it could take a bit. ) 

 

Hon, sorry, but no one knows what "causes" celiac to trigger in predisposed individuals.

 

No medical site, Pub Med article or celiac researcher can say for sure what the cause is. (Believe me, I've researched this thing for 3 years and I've looked   :) )

All we know is it is hereditary and is triggered in predisposed individuals who are consuming gluten. Environmental factors, pregnancy, stress, trauma or injury may well play a role. Research is ongoing.

 

As for your doctor, make a list of all your symptoms and just ask him if he will run the test. Why would he assume you're a hypochondriac ?(unless you've been in there a bazillion  times with various complaints?) 

 

Good luck and keep  us posted!


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"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





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