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

Want To See The Dermatologist For Testing, I Have A Question!

gffamily

By gffamily
in Dermatitis Herpetiformis

Recommended Posts

gffamily Rookie
gffamily
Posted

Hi, I was hoping someone could help me. I want to see the dermatologist to get the skin test for DH. (I found out I have gluten sensitivity, and one celiac gene, (and one for gluten sensitivity), after stool tests, but have never had a scope or blood test). I have been on a gluten-free diet for about 6 months, with a couple cc issues and accidental glutenings along the way. About nine months ago, while I was pregnant, I started getting these very itchy red bumps that look like mosquito bites. they would appear two or three at a time, stay for a week or so, and then go away. Then I would get more in another spot, and then they'd go away again. This has been happenening on and off since that first time, (although not as frequently there for a little while). I get them in the strangest places, that wouldn't be from a mosquito, (like on my rear end, my chest, the back of my head along the hair line, etc.)

Anyway, I would like to find out if this is dh or something else, but I was wondering, CAN I GET TESTED IF I DON'T HAVE A VISIBLE RASH AT THE TIME OF THE APPOINTMENT???

Thanks for your help!

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

Celiac.com Sponsor (A8-M):


Pegster Apprentice
Pegster
Posted

Yes. You need an active rash to be biopsied. My dermatologist had me come in when I had an actual blister so he could biopsy right next to it.

gffamily Rookie
gffamily
Posted
  • Author

Thanks Pegster. I'm not sure if I'll go to the dermatologist or not. My rashes don't seem nearly as bad as other people's. The most i've had at a time is a cluster of 6-8. They itch badly, but don't bleed or burn. Maybe I'll go if it worsens. I guess I just tire at the idea of having to convince someone I have a problem.

I had an appointment with my GP yesterday... he told me "I wouldn't worry about it. Sometimes people just get rashes. You could try some Bennedril"

Sigh...

I can't blame him though. At the time I had just one small red bump. Not very impressive.

Plus, he apparently doesn't put much stock in my enterolab results. When we discussed my daughters results last year he seemed to feel the tests had some merrit, but then again my daughter was very sick at the time.

Now he says these type of tests are not very specific, and give lots of false positives.

Makes me wonder what to do.

I WISH DR. FINE WOULD PUBLISH!!!!!!!

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I don't know if my experience was typical, but I was left with 2 red scars each about the size of a pea. It's been a year and a half, and they are still obvious enough so that when I wear a T-shirt, people say, "Ewww, what happened to your arm?" :ph34r:

My dermatologist also didn't bother to tell me that the prednisone I was on would screw up the biopsy and the bloodwork, and that the fact that I had been gluten-free for a month by the time I got into his office would also screw up the bloodwork. :ph34r:

gffamily Rookie
gffamily
Posted
  • Author
I don't know if my experience was typical, but I was left with 2 red scars each about the size of a pea. It's been a year and a half, and they are still obvious enough so that when I wear a T-shirt, people say, "Ewww, what happened to your arm." :ph34r:

My dermatologist also didn't bother to tell me that the prednisone I was on would screw up the biopsy and the bloodwork, and that the fact that I had been gluten-free for a month by the time I got into his office would also screw up the bloodwork. :ph34r:

How frustrating! And I was going to ask you if you had a dermatologist in the area to recommend....hmmmm :)

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

At least I can tell you who NOT to go to!

Avoid Joseph Bikowski at all costs!!!!! (Am I allowed to say that here????)

Could you have fleas? Do you have a dog or an outside cat? Or did you recently move into a house that was previously owned by a dog or outside cat? Or have you spent a lot of time outside (they can hitch-hike in on your shoes or clothing)?

The fact that they go away on their own after a week is what makes me wonder if they might be caused by something buggy. Then again, you're the only one in the family who has this, so I don't know....maybe you're the tastiest one in the family from producing all that sugary milk?

gffamily Rookie
gffamily
Posted
  • Author
At least I can tell you who NOT to go to!

Avoid Joseph Bikowski at all costs!!!!! (Am I allowed to say that here????)

Could you have fleas? Do you have a dog or an outside cat? Or did you recently move into a house that was previously owned by a dog or outside cat? Or have you spent a lot of time outside (they can hitch-hike in on your shoes or clothing)?

The fact that they go away on their own after a week is what makes me wonder if they might be caused by something buggy. Then again, you're the only one in the family who has this, so I don't know....maybe you're the tastiest one in the family from producing all that sugary milk?

I'll put the name in my "celiac info" folder. Maybe I'll start a NO list for docs. I have a few I could add already.

At first I wondered about bug bites too, because they sort of look like mosquito bites. I ruled that out though because when I started getting them it was winter, so I figured no bugs around. I do have 3 cats, but they all are 100% indoor kitties. Maybe your right, maybe I am the one bringing in fleas! I better check to make sure I'm not giving them to the cats!!!

I probably shouldn't worry about this because they are more just a nuissance at this point, and I'm already gluten-free so it wouldn't change anything there. I think I just battle with not having a diagnosis outside of Enterolab. I know it shouldn't matter, but my mom thinks we're crazy, and sometimes that gets to me.

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

Celiac.com Sponsor (A8-M):


Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Don't know if it helps you any, but my DH-type rash (I didn't have an official diagnosis, either) did NOT look like bug bites. It started by looking like a series of tiny pin pricks, and then morphed into something that looked like really, really, really severe poison ivy, but it was weirdly symmetrical: if a patch developed on my right upper arm, an identical patch would spring up on the left. It was up and down both arms in my case, which is why Bikowski insisted it couldn't possibly be DH (??!!), but perfectly symmetrical, which prompted me to google "thyroid symmetrical rashes" (I already had an 18-year history of Hoshimoto's), and found DH. In fact, I couldn't find any other references to symmetrical rashes, hmm, hmmmm.

gffamily Rookie
gffamily
Posted
  • Author
Don't know if it helps you any, but my DH-type rash (I didn't have an official diagnosis, either) did NOT look like bug bites. It started by looking like a series of tiny pin pricks, and then morphed into something that looked like really, really, really severe poison ivy, but it was weirdly symmetrical: if a patch developed on my right upper arm, an identical patch would spring up on the left. It was up and down both arms in my case, which is why Bikowski insisted it couldn't possibly be DH (??!!), but perfectly symmetrical, which prompted me to google "thyroid symmetrical rashes" (I already had an 18-year history of Hoshimoto's), and found DH. In fact, I couldn't find any other references to symmetrical rashes, hmm, hmmmm.

I've read about the rash being symmetrical. Mine is not. I wonder what it is??? The other thing the gp told me was that "it could be from some type of food intolerance". I apparently have sensitivity to yeast and eggs also and haven't cut them out yet. Maybe that'd help.

By the way, how long after you went gluten-free did it take for your rash to totally go away?

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

It took a good 4-6 weeks to disappear completely, but I went gluten-free concurrently with a 10-day course ofZyrtec (which was very effective against the itch, as I never take antihistamines) and prednisone, which, presumably shut off my immune system, and it did start to get noticeably better within 48 hours.

gffamily Rookie
gffamily
Posted
  • Author
It took a good 4-6 weeks to disappear completely, but I went gluten-free concurrently with a 10-day course ofZyrtec (which was very effective against the itch, as I never take antihistamines) and prednisone, which, presumably shut off my immune system, and it did start to get noticeably better within 48 hours.

Ok. Thanks for sharing all the info. I'm just trying to learn a little more about it. Sounds like it was really difficult to deal with, and I should just be thankful that my rash is mild, whatever it is.

I'm sorry you had to go through all that, (and have an uncooperative/unknowledgeable dermatologist to boot!)

Thanks for your thoughts.

Archived

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

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


  • Member Statistics

    • Total Members
      131,606
    • Most Online (within 30 mins)
      7,748
    TGreen
    Newest Member
    TGreen
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Potential celiac need advice

      By Scott Adams · Posted

      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.