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Dermatitis Herpetiformis ? Pics Inside

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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.


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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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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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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 
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

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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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    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
    • In reflex testing they look at a result and decide if the next test is needed.  Another example, some labs only do EMA if the Ttg is positive.
    • Her blood panel is POSITIVE!!!! She's celiac! I don't know what in the world the GI is thinking. That's crazy! The GI obviously doesn't really know celiac. The constipation is tripping her up but celiacs can be constipated as much as they can go the other way and more than 50% of dx'd celiacs presented with NO GI issues. Keep her eating gluten until you get the results of the endoscopic biopsies.
    • Your test results, to me, seem to indicate that you do not have celiac disease. (Everything is within normal levels.) And, your total IgA is high. Many people with celiac disease have low total IgA levels (10-15 times more frequently than people in the general population). The total IgA is conducted because about 3% of people are IgA deficient. If you have a very low total IgA, that can invalidate the three blood tests that rely on your IgA levels.   Plumbago
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