0
Chefwife8

Dermatitis Herpetiformis ( And Other Rashes)

Rate this topic

Recommended Posts

I have had a horrible rash around my eyes for almost 2 years down my arms all over my neck. I have been to 5 different dr's in the last month or two I developed a new rash horribly itchy and painful. Went to a new Dermatologist yesterday as soon as he saw the new rash he was pretty sure it's dermatitis herpetiformis did a biopsy and I guess in about 10 days will find out for sure. I have suffered from migraines/headaches most my life and recently have had some pretty uncomfortable heart palpatations.

If the biopsy is positive does that mean I have Celiacs? He did tell me to take gluten out of my diet. I am 39 years old is it common to be diagnosed this late in life?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Hi, welcome to the forum. Yes, if you have DH then you have celiac disease. I think it's wonderful that you found a dermatologist that suspected DH and did a biopsy -- apparently that's a rarity. I hope he did the biopsy from skin right next to the blister and not directly on it?

As to your question about being dx later in life, it's not uncommon; especially if you didn't or don't have the 'classic' symptoms. Even those with the classic symptoms sometimes have a hard time being diagnosed. Those of us with DH usually have fewer of the GI symptoms, though looking back I did have my moments, they were uncommon. Keep us posted on the results of the biopsy. Also be sure to look for the thread about itch relief for some helpful suggestions.

Share this post


Link to post
Share on other sites

Hi and welcome again. Sorry that you're in the 'waiting' phase - I never cope well with that! And yes, having a dermatologist who would suggest this is a good start - even if it's not DH, at least he's not stuck in the habit of fobbing patients off with the scabies or eczema thing and can think outside the box.

I am recently diagnosed at 31. All the literature says it's actually most common to be diagnosed in your 30s and 40s. I hope that it turns out to be something a litte less permanent for you. But if not, there's lots of helpful people around here. Be in touch with your questions and let us know the results when you get them.

Share this post


Link to post
Share on other sites

What other symptoms if any did you have besides the dh rash? I have had horrible joint pain that comes and goes since my early 30 dr's thought I had RA or psoriatic arthritis this drem does not think my other rash is psoriasis. While doing some reading about Celiacs joint pain is a symptom I have also started having awful heart palpatations.

The waiting is awful, but the thought that I may finally have some answers is such a relief.

Share this post


Link to post
Share on other sites

Please be sure to read up & make sure the derm did the biopsy correctly BEFORE you go gluten free. The biopsy will become neg. pretty quickly after having gone gluten free so you don't want to have to go back on gluten to re-do a biopsy.

Yes, a dx of dh is a dx of celiac.

I had heart palpitations, horrid, at times completely debilitating joint & bone pain, neuro symptoms, anger (rage), depression, "out there" feelings --- sort of dizzy but not quite classically dizzy, gas, bloat - bad bloat, BELCHING like a sailor, indigestion, anxiety, memory problems such as not being able to remember the name for a fork, unable to concentrate, when typing I would get "dyslexic" & type words with the letters transposed - IE: typing - tpying, major fatigue, "Needles" in my hands & feet. These did not all come on hard & heavy at one time; it was a progression & docs always chalked it up to menopause. I'm 55 now but these symptoms MOL began coming on about 10 years ago. In hindsight, I now see where I had symptoms as a child/teen but they went into remission until my 40's.

Limiting iodine temporarily can help --- many of us with dh have to limit our iodine intake for a while. For a low iodine guideline see:

http://www.thyca.org/rai.htm#diet

Welcome to the club & the board.

Share this post


Link to post
Share on other sites
Ads by Google:


Well my biopsy was neg after learning how it should be done I realize that it was done wrong. Now I am not sure what to do this rash is unbearable it comes and goes and has left scars is this typical for dh? Would really love a diagnoses but if I don't get one soon I think I may go crazy! I am planning on going on the gaps diet to see if it helps

What other test should I ask my dr for

Share this post


Link to post
Share on other sites

Well my biopsy was neg after learning how it should be done I realize that it was done wrong. Now I am not sure what to do this rash is unbearable it comes and goes and has left scars is this typical for dh? Would really love a diagnoses but if I don't get one soon I think I may go crazy! I am planning on going on the gaps diet to see if it helps

What other test should I ask my dr for

 

 

Slaps palm to forehead!!  Can't believe yet another derm. screwed up a DH biopsy!!!  Two minutes with Dr. Google would tell them how to do it.....  I am so sorry.

 

And let me guess, you took his advice and stopped eating gluten, so now testing is not available to you without going back on gluten for six weeks.  And I am afraid that is the very sad truth of it.  For any of these tests you do have to be eating gluten for the results to be valid and accurate.  Skin biopsy, celiac blood panel, endoscopy with biopsy.  These are the three ways of medically/scientifically diagnosing celiac.  The only other way is adherence to the gluten free diet (complete adherence) and a resolution of symptoms while gluten free.

 

Yes, the DH can come and go and it does leave scars, often angry purple ones to start with but then they fade to white.  And the DH can linger long after you stop eating gluten, unfortunately.  It is the slowest of the gluten symptoms to resolve, it seems (apart from some of the neurological signs).  It can also be made worse by iodine and you may be one of the iodine sensitive folks.  Trying to keep iodine out of your diet as much as possible can help to clear up your symptoms.  Have you been on the DH thread here on the forum?  There is a lot of useful information there.

 

I hope you are able to get things under control soon and start feeling better.  Best wishes! :)

  • Upvote 1

Share this post


Link to post
Share on other sites

Thankfully I am still eating gluten I knew that If more tests were run I would have to keep eating it. Just not sure what tests to ask for

to be run so tired of the dr's just looking at me and saying sorry have no clue what is wrong, but here are some steroids to help for a minute. I have been on and off steroids for almost 2 years it is the only thing that helps. I have the typical rash that looks like dh and then I also have a rash around my eyes that itches really had and hurts my eyes crack and bleed and the skin flakes and peals it is awful it is also around my mouth some mornings i wake and my lips are swollen. I have been to an allergist and the IGA blood test was high I also am allergic to black pepper, oregano, cinammon, almonds, apples, bananas, oysters, plums. I have taken these out of my diet and I still have no change in my rashes.

The tests the dr ordered are

CBC

Celiac disease panel

If I am on oral steriods will it effect the test?

Share this post


Link to post
Share on other sites

On and off steroids for 2 years definitely can contribute to a false negative result.

Every doctor I've seen, when I've described my steroid rx's around the time I could have been tested have shook their heads...

So, if your blood work comes up positive that's fabulous. If its negative do not discount it may be Celiac.

Share this post


Link to post
Share on other sites


Ads by Google:


The lady at the lab said steriods have no effect in the celiac panel not so sure I believe that, but we will see. My mother has crohns and all my brothers and sister have some sort of stomache problem. The more I think about the symptoms I would not be surprised if my mother had Celiacs

Share this post


Link to post
Share on other sites

The lady at the lab said steriods have no effect in the celiac panel not so sure I believe that, but we will see. My mother has crohns and all my brothers and sister have some sort of stomache problem. The more I think about the symptoms I would not be surprised if my mother had Celiacs

The lady at the lab is misinformed. It is commonly mentioned in studies and medical literature that steroids can influence celiac testing.

Share this post


Link to post
Share on other sites

The lady at the lab is misinformed. It is commonly mentioned in studies and medical literature that steroids can influence celiac testing.

That's what I thought I hate that there is such conflicting info out there. Hoping the steroids don't effect the test. Having some sort if answer would be great

Share this post


Link to post
Share on other sites

Well, if you get a neg. result them you can't be sure it's truly neg. Also, I will mention that topical steroids will make the dh biopsy false neg.

 

You said the doc ordered a celiac disease panel. Maybe & maybe not. Here is the current, FULL blood panel:

 

 

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
 
Anything less & you aren't getting the true celiac panel. Sorry, but it happens all too often. I saw a GI & he only ordered 3 of the 6. Not worth bothering with. ALSO, only 40% of cleiacs with dh test positive on the celiac panel so there is that to consider too.
 
It's unfortunate that the majority of docs out there both derms & GI's do not truly know what they're doing.
Furthermore, a lot of derms are unwilling to dx celiac based on a positive skin biopsy. Several reasons --- they feel they are overstepping their bounds b/c celiac is a GI disease & they don't quite "get it" that dh IS celiac. They do not realize that having dh most often means you have neg. blood & endoscopy so sending you to the GI for a dx probably won't work.

Share this post


Link to post
Share on other sites

Well the test the dr ordered are neg. I am going ask for them to be redone since I was on prednisone during the test. I am so frustrated so tired of not feeling good and constantly itching

Share this post


Link to post
Share on other sites

Chefwife8

 

In all reality . . . I'm not sure it matters to have a definite diagnosis of DH.  It is just marked on your medical charts and who is that helping?   I guess it does matter to be sure it isn't another skin disease.

 

I think the doctor and/or test being positive about DH is for peace of mind.  It sure doesn't help the itch, sting or burn.  I have been to 5 dermatologist with 6 biopsies before the head of the university of dermatology took 2 biopsies correctly.  Has to be next to a lesion with direct immunofluorescence to see IgA . I had been gluten-free and on Dapsone for 5 months but he still took the biopsies.  He didn't think they would show DH but still took them.  Now my record with my PCP and this Dermatologist has charted Celiac DH.  

 

I still have the rash, burning, stinging and itch.  The healed lesions do turn a purple color and fade to white.  They also leave white circles like the pigmentation is gone.  I told this last Dermatologist, "It doesn't matter if the biopsy is positive, I know how the gluten-free diet and Dapsone has helped.  I came to you because my PCP wanted to be sure it wasn't T-cell Lymphoma as I am a NH Lymphoma (remission) patient."  BTW, only 1% of people with Celiac/DH develop NH Lymphoma, a serious complication of gluten enteropathy.  I've been sick a long time when a simple change of diet would have healed me.

 

You could ask for the biopsy to be done correctly but I'm pretty sure the steroids can affect the results.  I know I was told by one of the Derms that the topical steroids affected results.  If they can't get it right, go gluten free.  If you see positive results. . . that is all that matters, at least to me.  Good luck!

Share this post


Link to post
Share on other sites

And remember that dh can & all too often does still present for 2 yrs. or more after going gluten-free. When I first went gluten-free, my dh laid down almost completely & at times was gone for short periods but it can & does come back. So going gluten-free is no instant magic bullet.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   12 Members, 2 Anonymous, 508 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
    Ingredients:
    2 cans gluten-free green chili enchilada sauce (I use Hatch brand) 1 small head cauliflower, roasted and chopped 6 ounces chicken meat, browned ½ cup cotija cheese, crumbled ½ cup queso fresco, diced 1 medium onion, diced ⅓ cup green onions, minced ¼ cup radishes, sliced 1 tablespoon cooking oil 1 cup chopped cabbage, for serving ½ cup sliced cherry or grape tomatoes, for serving ¼ cup cilantro, chopped 1 dozen fresh corn tortillas  ⅔ cup oil, for softening tortillas 1 large avocado, cut into small chunks Note: For a tasty vegetarian version, just omit the chicken, double the roasted cauliflower, and prepare according to directions.
    Directions:
    Heat 1 tablespoon oil in a cast iron or ovenproof pan until hot.
    Add chicken and brown lightly on both sides. 
    Remove chicken to paper towels to cool.
     
    Cut cauliflower into small pieces and place in the oiled pan.
    Roast in oven at 350F until browned on both sides.
    Remove from the oven when tender. 
    Allow roasted cauliflower to cool.
    Chop cauliflower, or break into small pieces and set aside.
    Chop cooled chicken and set aside.
    Heat 1 inch of cooking oil in a small frying pan.
    When oil is hot, use a spatula to submerge a tortilla in the oil and leave only long enough to soften, about 10 seconds or so. 
    Remove soft tortilla to a paper towel and repeat with remaining tortillas.
    Pour enough enchilada sauce to coat the bottom of a large casserole pan.
    Dunk a tortilla into the sauce and cover both sides. Add more sauce as needed.
    Fill each tortilla with bits of chicken, cauliflower, onion, and queso fresco, and roll into shape.
    When pan is full of rolled enchiladas, top with remaining sauce.
    Cook at 350F until sauce bubbles.
    Remove and top with fresh cotija cheese and scallions.
    Serve with rice, beans, and cabbage, and garnish with avocado, cilantro, and sliced grape tomatoes.

     

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

  • Forum Statistics

    • Total Topics
      110,280
    • Total Posts
      949,884
  • Member Statistics

    • Total Members
      77,955
    • Most Online
      3,093

    Newest Member
    bjmgeek
    Joined
  • Popular Now

  • Topics

  • Posts

    • For the brown rice, it could be the fiber (assuming you mean whole grain rice, which still has husk on it). If I have been glutened recently, whole grain brown rice and other fibrous foods are not digested well by my GI tract. Because I get non-GI symptoms, I am quite sure that the cause is not gluten. You might stay away from whole grain rice for a bit, or transition slowly (mix white/whole grain in increasing proportions as tolerated). For pork, it is unlikely that the type of feed would have an influence on the gluten content of the meat. Gluten is not transferred into the muscle (meat) or eggs of animals. It stays in the GI tract. There could be some small chance of contamination from the GI tract during butchering. I don't know much about commercial butchering/abattoirs, but I think that this is heavily guarded against due to the risk of fecal contamination. Sometimes, the thing we think is making is sick is in fact not - sometimes it is something else that we do in association with that food. Perhaps there is a seasoning that you use with pork, or perhaps you use certain kitchen tools for pork that are contaminated. I used to always get sick when I cooked butternut squash. It was because I was using a hacksaw to cut them, which was contaminated with drywall (drywall contains wheat). If you are buying your meat from a small, independent butcher (where they bread/flour meat in-store), you might think about switching to buying big box grocery meat. At big box grocery stores, they just section up the meat that is pre-butchered. You could also be allergic to pork - this is rare, but some people are (especially those who are allergic to cats). Hope this helps.  
    • What pigs eat would note really get to your eating their meat, this might be different with something that you can not clean out well or eat part of the digestive tract like farmed crayfish, shrimp, or poorly cleaned fish/chicken. But pork...unless your eating part of the intestines the meat should not bother you if they ate even pure wheat.

      Brown rice, this could be a issues with CC, starches, fiber etc.  There have been major CC issues with grains and legumes in recent months. I suggest sticking to a safer brand like Lundenburg and or visually sorting your rice, and washing it before cooking it. Again it could also be a fiber issues or starches.

      Other thoughts some people bit by a lone star tick develop allergies to pork and or beef.

      Some people are just intolerant to certain foods, and we can develop many food sensitivities to just about anything with this disease. Often new or certain food intolerance can be linked to something we ate when we ate gluten and our body just has a associative issue that might go away in a few years. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Brown Rice and pork are meant to be gluten free yet they set me off. Pork I reckon is due to them eating cereals.  Brown rice I have no idea although white is fine . Does anyone else get set off by them or is my body just strange?
    • I live in a town with hy-vee grocery stores. If you go to their website https://www.hy-vee.com/meal-solutions/special-diets/default.aspx and click on the gluten free foods link you will find every hy-vee product that is gluten free. I have had many and have never had a problem.  This list is for Hy-Vee products so it will not include other companies. I seem to survive off a lot of PB and J sandwiches when traveling. 
    • Hi Mavis, Celiacs are often low on Vitamin D, vitamin B-12, and sometimes iron, and selenium. Wheat is pretty popular here too.  But there are other options like rice and buckwheat, quinoa, etc.
  • Blog Entries

  • Upcoming Events