Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Could My Shingles Have Been Dermatitis Herpetiformis

StephanCasey

By StephanCasey
in Dermatitis Herpetiformis

Recommended Posts

StephanCasey Rookie
StephanCasey
Posted

I don't know if I have celiac but I want to get tested. About a year and I half ago (I was only 17), I got a bit sick and then after a few weeks I got these blistery things on the right side of my forehead (my right, your left). I went to a clinic and the nurse looked at it and said it looked like shingles. So I went to a doctor and told him what the nurse said. He said it must be and told me how my immune system must be pretty bad because most people only get shingles when they are older. I was under a bit of exam stress at the time. I've been feeling kind of sick the past few years. It's hard to explain. I was quite chubby as a child and as I got older I just lost weight. Not for any particular reason. I assumed it was because I grew but even though I'm quite skinny my body doesn't feel or look very good. 

 

I also have become pretty pale and I'm not sure if I'm anemic but I think I'm going that way.

 

So I researched stuff about celiac and the dermatitis herpetiformis pictures seemed to match what I had better thing shingles.

 

My "shingles". I had a headache for about a day before the stuff appeared on my forehead. It was a kind of sharp pain and my shingles were a bit itchy. I've heard that they're not as itchy as dh but how itchy is dh. It was itchy to the point that I sometimes felt the urge to scratch it which I admittedly did a little bit once or twice. The one time was after I came out of the shower and it peeled off a bit. Kind of like wet paper. That's the best way I can explain it. It looked a bit purple-ish.

 

I was gone in about a week. I was on meds for shingles but who knows if that even helped it go away?

 

I didn't take any pictures but I wish I did

 

Edit: I also just wanna add that I do still have skin conditions. I have acne which could actually be dh. I also have red bumps (which are often filled with white fluid) on my legs, the back of my arms, my chest and (worst of all) on my back. By worst of all I mean there're lots there..

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

If you want to get tested for celiac disease then you MUST continue eating a full gluten diet until all testing is finished & the results are in just in case they want to retest something.

 

You asked how itchy dh is...... DH is insanely itchy, dh is called the suicidal itch, dh is so itchy you can not get to sleep & it keeps you awake all night long. DH is so itchy that sleeping in poison ivy & rolling in chiggers would be a walk in the park in comparison. DH is a bone deep itch. 

 

The hallmarks of dh are a bilateral presentation, an itch that can not be ignored, it is not a "sometimes itch" or an itch that you "sometimes feel the urge to scratch", water filled blisters or sub epidermal blisters. 

 

If you think you have dh then you have to get a dh biopsy of your skin & it has to be taken from clear skin adjacent to an active lesion & YOU HAVE TO BE ON A FULL GLUTEN DIET OR IT WILL COME UP NEGATIVE. Most people with dh (60%) test negative on the celiac blood panel as well as the endoscopy. 

squirmingitch Veteran
squirmingitch
Posted

Also, read this link:

https://www.celiac.com/forums/topic/108804-to-anyone-looking-to-get-a-dx-of-dh-a-skin-biopsy/

StephanCasey Rookie
StephanCasey
Posted
  • Author

It was pretty itchy and all the time while I had it but I think it's hard to say because it was quite a small rash. Not that small. The bumps weren't very small but it only covered a small portion right at the side of my forehead. Also it went away in about a week and I haven't gotten it since but I'm worried that later on in life it will come back worse. I was 17

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,962
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.