0
pennyhofstadter

Another Newbie: Could This Be Dh?

Rate this topic

Recommended Posts

Hi,

I'm brand new also to the boards after lurking & learning for several days. It's been a huge help - thank you!

I'm 36 and I feel I have some sort of gluten intolerance, and probably have for most of my life. I've been "diagnosed" as having IBS since I was 19 and have been off/on antispasmodics since I was around 6. I've also had migraines since I was about that age and stomachaches/pain/cramping and non-traditional bowel habits for as long as I can remember.

I'd pretty much given up hope in the medical community helping and accepted my normal, but for this crazy rash! I've always had rashes and weird breakouts, but I've had a continuous rash on my shins/calves/ankles for 6 years. I've seen 2 dermatologists and a handful of doctors and it's "eczema" or "psorasis". But, the medications (strongest group 1 steroid ointment/cream, antibiotics, antifungals, and oral steroids) don't touch it and over time it spread and got worse. I also have it on my wrists, elbows, and occasionally other places.

I could write a book, but I'll spare you at the moment. My a-ha moment after was going on a low-carb diet, I was able to sleep thru the night without waking 3x to scratch. Arms cleared up and legs cleared up a little. Then "cheating" the diet with pizza and it flaring again. Cheated again, and having a terrible GI reaction and flare.

Do you mind taking a look? Thanks soooo much!

Currently:

fb0ae878.jpg

fb0ae878.jpg

Newest "patch" - very small blisters forming:

93de42c7.jpg

da717d04.jpg

At a bad flare in March:

bb0d8805.jpg

b4dc57cd.jpg

Share this post


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


Penny,

Welcome! Oh that looks painful and miserable but thank you for posting pictures.

This is just my opinion.

Yes, your rash/sores look like DH.

The first two pics are the consistent with what the rash looks like in the latter stages of healing. Some people describe them as presenting like bug bites, or mosquito bites.

The third and fourth pictures clearly show raised edges on the lesions which is also consistent with DH.

The dark purple discoloration where healing has taken place is also consistent with DH. When total healing occurs you can have hyper-pigmented spots or de-pigmented spots that appear totally white where the lesions once were.

The fact that it responds favorably to being gluten free and the fact that it is intensely itchy especially at night are both consistent with DH.

Have a look at our DH photo bank.

Your long term history of migraine and "IBS" make the diagnosis almost seem a certainty. Again this is only my opinion.

You can ask your Dr to refer you for a biopsy if you want testing. A biopsy taken from the clear skin will diagnose Celiac if there are IgA antibodies in the skin.

Another clue to the fact that that it is most likely DH is the fact that steroids did not solve the problem. DH will only totally heal if you are strictly gluten free, though it is known to come and go in cycles or to heal for brief periods of time.

Do some reading on the DH forum. Ask questions anytime.

If you choose to fore-go testing, the rash will eventually heal if you are strictly gluten free. Some of us have to limit iodine for a while for the lesions to heal. There is a benzocaine pain relieving ointment by Walgreens that helps the stinging and itching temporarily. Solarcaine can help too. Thanks for posting your pictures.

  • Upvote 1

Share this post


Link to post
Share on other sites

I agree completely with eatmeatforgood! The photos really look like DH, and your description is consistent with this type of rash....also, since it has responded previously to a gluten-free diet (low carb), I think you have your answer. However, if it IS DH, then what you have is true celiac, not just gluten sensitivity. Many of us here on the Forum have, in fact, forgone the testing due to a high incompetency rate among dermatologists (and I mean it!). Unless you have a real need for an "official" diagnosis, I'd recommend that you adopt a completely gluten-free diet and also eliminate iodine for a few months. You will feel so much better!

  • Upvote 1

Share this post


Link to post
Share on other sites

Well Penny, I absolutely concur with what eatmeat & rosetapper said! I think IMO you have dh & that means you have celiac disease. And OH! You poor, poor thing! I can see all the scars from previous, repeated outbreaks! All 3 of us have been there.ph34r.gif

At this point, since you are displaying what I believe to be dyed in the wool dh; then the blood panel for celiac will probably not be of any help to you. We with dh often test neg. on the celiac blood panel b/c the antibodies are in our SKIN. We also tend to have patchier damage on endoscopy however with the length of time (since age 6) that you have had it, you might display enough villi damage to show. But the long & short of it is that it can be darn hard for us to get an official dx. Biopsies of an area adjacent to the lesions can give a dx of dh but like rose said --- there is a high incompetency rate among derms & that's IF you can even convince one that they need to biopsy for dh. You've already been down the derm road enough to know that haven't you?

I will heartily echo rose's next to last sentence!!!!!

Welcome to the board!smile.gif

Share this post


Link to post
Share on other sites

I am so relieved. I really have been hopeful to feel like I might have answers. I'm struggling with a diagnosis because I'd like to have it and I am strongly considering having one or both of my children tested. My daughter has some symptoms even now and was quite the colicy refluxy baby and my son had some mysterious constipation issues as a breasted baby, which is very unusual. Son has eczema but tested negative to a skin allergy test to wheat. ????

I have been trying very hard to be gluten-free for 2wks now. I've has atleast 1 exposure to a fast food salad, but otherwise done well. My family is very supportive and I have 4 friends who are/have celiac family members. They've been very helpful. I have a positive attitude about the diet because IT'S WONDERFUL to finally have a stomach that doesn't hurt. I didn't realize HOW MUCH it did hurt until it stopped. I don't need to bring up unexpected bathroom accidents! ;) I'm sure most of y'all have been there.

I almost just want a positive test to tell my jerky docs over the past 20 yrs, THIS is what's been going on. But otherwise I don't know that I need it. I'm nervous of getting a false negative since ive been low gluten for 4 months and gluten-free for 2 wks. I'm getting names of good doctors in my area (SC, US) since the GI I loved retired.

Any opinions on the stool tests? I've read mixed reviews.

Off to learn more!! THANKS SO VERY MUCH!

Share this post


Link to post
Share on other sites
Ads by Google:


Hate to tell you this but EVEN for the skin biopsy for dh you MUST be eating gluten!!!!! And many doctors don't know this nor that for the blood or endoscopy you HAVE to be eating gluten. Gluten to the tune of 2 or 3 months the equivalent of 3-4 slices of bread per day. NOW, I will also say that many ppl who have gone either gluten light OR gluten free have much stronger reactions when they start eating gluten again & a lot can't make it b/c of those reactions. Just letting you know here. And that's why so many of us are self dx'd too; especially those of us with dh.

Great that you know other celiacs. And that your family is supportive!

I really can't speak on the stool tests but it seems mainstream docs don't use them at all. None of the celiac organizations list them as valid celiac tests either. Soooooooooo....... Maybe someone will come on & be able to give you more/better info. on those.

Ask anything, anytime, anywhere on this board.smile.gif

Share this post


Link to post
Share on other sites

Penny, search here & post here for a doc in your area.

http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/

Share this post


Link to post
Share on other sites

Good gosh!! Penny, your legs looks so much like what my hips and arms looked like back in April. My biopsy for dh came out negative but I still don't believe that I don't have dh. I agree with you - I also want a postive test so I say to the doctors see, I told you so, especially to the one dermo who told me I couldn't possibly have dh because that doesn't itch!!!!!

Share this post


Link to post
Share on other sites

I agree with the others, it certainly looks like DH!

In my opinion, unless you have some overpowering need (perhaps legal) for a formal diagnosis, forget the need for confirmation by doctors. So far, four of the five doctors I've used were completely lacking competence (well really most of them were aggressively unhelpful, even antagonistic to the idea). And the fifth simply agreed after examining my evidence acquired online that I was almost certainly correct. What he would have come up with on his own is uncertain.

Once you are strictly gluten free for a while, I predict you will be so certain that your self diagnosis is correct, that you won't need outside confirmation.

I find I need to be extremely strict about consuming gluten, but gluten on my skin or breathed in don't have any effect I can detect.

Share this post


Link to post
Share on other sites

BTW, some of the MD's I encountered were so egotistical and cynical that you couldn't shame them by giving them cut and dried evidence, once they've made up their minds. I'd save your energy for something more likely to yield rewards.

Share this post


Link to post
Share on other sites


Ads by Google:


Oh man. Your pictures look like me a year ago. I really feel for you.

Regarding the stool tests: I did the EnteroLab testing because my blood tests came back negative (as is common with DH). I ordered the package that tests for gluten, casein and also does genetic testing. What I really wanted was the genetic testing because I wanted to find out if I even have the genes that predispose to celiac. My intestinal antigliadin antibody was elevated and they recommended going strictly gluten free permanently. My genetic testing indicated that I had TWO celiac genes. I took the results to my doctor (who believed it was DH all along) and he agreed with the lab's recommendation to go gluten-free. He stated that having two predisposing genes, along with the elevated antigliadin antibody, along with the appearance of my rash warranted going gluten free for at least two years to see if I could clear it up. His opinion was that I have DH and that because I had gone undiagnosed for about 7 years it would likely take a minimum of two years to get the antibodies out of my skin.

I am now at the two year mark and the horrible rash (like your pictures) is 95% better. I am still struggling with the skin damage that many years (pre-diagnosis)of scratching and using steroid creams have caused.

Share this post


Link to post
Share on other sites

Thanks so much everyone! I find your posts so encouraging! I have so much to learn.

I've been gluten-free minus fine tuning it and one slip up of a breaded chicken strip, for 2.5 weeks now. I feel like my legs have slightly improved. Is a big improvement from 8 months ago.

I'm still itching and it's pretty regular, so I am thinking its nothing I am eating NOW, but just having to work itself out? Does that seem true?

I don't know what I want to do with the medical diagnosis. I have so much doubt when it comes to them in this regard after all the years. I don't want to be seen as following a "fad" even though my legs and body is a mess. :P I'm strongly considering the mail in tests and would love to hear more experiences. I cannot thank you ALL enough for all of your help and kindess. It has meant so much to me.

New pic : 8/6/12

08d6f4c9.jpg

Share this post


Link to post
Share on other sites

Yes, Penny, it just has to work itself out of your skin. You must be extremely vigilant though about not getting glutened or cc'd. Every time you do it will make the "end date" farther out. Now, even if you were squeaky clean gluten-free for 6, 8, 10 months ---- dh can still present whenever it darn well feels like it. Until it's all out of your skin you may go in & out of dh outbreaks BUT generally, the longer you go w/o getting cc'd the less severe the outbreaks will become & they will not last as long. It can take 2 years or (gulp!) even longer for all the IgA to get out of your skin. And dh is terribly sensitive to the tiniest amount of gluten.

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   15 Members, 1 Anonymous, 548 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