Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

Dh Is Driving Me Crazy... Help Please!

6 posts in this topic

My name is dakota, i am 20 years old and in the united states air force.

I started to get what seemed like a major skin inflation back in November. when i first saw my dr he thought it was scabies. He tried to treat me for that, didn't work. thought i just had an allergic reaction so put me on beneydryl, didnt help. the dr made me see a dermatologist. After a skin biopsy and more blood work he thought i had psoriasis. He put me through months of photo-therapy which cleared up a large portion of it but still was not helping around the elbows, knees, feet, hands, and butt. i finally saw a rhuematologist who said i possibly had an autoimmune problem. finally saw the GI. HE did a upper endoscopy. He failed to tell me to eat a slice of bread everyday for 7 days before and when the results came in he said it was clean, no signs of a problem. rescheduled the upper endoscopy for june 4th. ive been told there is a chance i could be allergic or intollerant of gluten so i quit eating it without the dr's say so. i quit itching for the most part except around the key areas previously mentioned. on a normal day i dont itch anywhere except the wrist, thighs, and butt. it is killing me and i need to know if anyone has any surefire ways to stop the itching. It has been so bad at points that i have seriously considered suicide at times. i know its not worth it which is whats stopping me from doing so. PLEASE HELP ME!!!!!


Share this post

Link to post
Share on other sites

Ads by Google:

It sounds like you might have DH, which is a version of coeliac disease.

There are no sure fire ways to stop the itching, but keeping the lesions moistened with any number of lotions and creams will help a lot. Others have suggested pain relieving lotions that may work especially well. (They will soon recommend some to you, I'm sure). But none will make the itching/burning disappear completely at once, I think.

But you should be confident that if you are able to eliminate gluten completely from your diet you WILL eventually be rid of this scourge. It may take weeks, or much longer, but the itch will get better if you get rid of the gluten.

I urge you to read through a lot of the older threads in this forum. There is a wealth of information there, including much that you will rarely hear from a physician.


Share this post

Link to post
Share on other sites

Well, it definitely sounds like you have a gluten rash, probably DH.

As far as the testing goes - DH people tend to test negative on endoscopies because the damage they are looking for tends to manifest itself on the skin. It is patchier and less prevalent in your intestines because it is amusing itself on your outside. Thrilling, huh?

Since you already went gluten-free you have more testing problems. You can't be accurately tested for celiac disease while gluten-free (serological or biopsy). It invalidates the results because the antibodies fall. Also, if they gave you steroids for the rash (lots of Derms do) that can invalidate testing.

Your best bet for an accurate dx is a biopsy by a qualified dermatologist of the skin rash. You need a derm who has dx'ed DH before. It is a very specific group of tests performed on a biopsy of your skin. This is the best info I have about testing

As far as the itching - obviously going gluten-free and a receding rash is the best fix. I prefer Vanicream lotion, applied several times a day. I also slather on a bit of Vaseline sometimes to keep it lubricated since the scabs can be dry and thick. Ice packs help the itching. I don't use NSAIDs for pain, I use Tylenol since NSAIDs can spike DH. Some people with DH are iodine or salicylate sensitive. If your rash comes back inexplicably (you haven't eaten gluten) you should look into those foods as an aggravating factor.

Some people find itch relief from topicals like Orajel or other "pain relief" creams. I had a bit of luck using cromolyn mixed with Vanicream

I'm sorry you're having such a hard time. DH is a terribly itchy rash and can literally make you insane. And if the rash doesn't do it the doctors will. I also advise staying away from most processed foods right now (whether you are gluten-free or not). Most are high on the salicylate/MSG factor and that usually aggravates DH. I ate some highly processed gluten-free chips in the beginning and literally went psychodellic and immediately broke out.


Share this post

Link to post
Share on other sites

Just thought of something.

If you can get one of those doctors to prescribe a DH treatment that works (probably dapsone) - meaning gets rid of the rash - and you are able to go back on gluten (you don't have other reactions like D, migraines, neuro) you could stay on gluten long enough for testing (don't know how long you've been off, but they suggest 2-3 months on gluten before testing).

This isn't a permanent solution, but it will enable an endoscopy and blood work. Unfortunately, it disables a skin biopsy unless you come off the dapsone while on gluten to provoke a flare.

Just a thought.


Share this post

Link to post
Share on other sites

pricklypear you are always so thorough and helpful for these newcomers!!

My son and I are having a lot us success with heel balm. The brand I use is Australian: Eulactol

I haven't tried any of the other brands.

The active ingredient is urea so it isn't the best smelling stuff and very sticky. Once it is on though it soaks right in and loses the scent. Urea is a "super" skin healer.

Do you know what the consequences (being in the military) will be if you are diagnosed with celiac or gluten intolerance? I was in the Australian navy and I just can't imagine them ever accommodating such a diet. With DH in particularly you need to be super strict in the kitchen/bathroom etc and needless to say anywhere, anytime.

I had to have the conversation with my new love today about kissing after he'd eaten glutens. I thought it would be awkward but he is a lovely, thoughtful man. There are many of these unexpected things that have arisen during my journey in the past year. I've been through what you are going through now. Very down - absolutely and thoroughly miserable. So many days of hiding inside, itching till I bled. Now on the uphill side and life is looking pretty good. Still have lesions and new outbreaks every day but far less and less intense itch, lots more healing than new ones. Yours too will continue to improve but you need to get *strict*.


Share this post

Link to post
Share on other sites

I second the recommendation to temporarily remove iodine from your diet. I got glutened two months ago, and because there's iodine in my thyroid medications, it's like a match was lit by the gluten....and the iodine is continuing to allow it to burn. I'm still breaking out daily with new blisters. It's pure hell! So, please, do try to remove the iodine--that should help. That's how I use to control the blisters before I knew I had gluten--removing the iodine stopped the blisters in their track.

One last thing: The military can discharge you for having celiac. I know someone who had his rash diagnosed as DH, and the doctor kindly didn't mention in on the forms that that meant he had celiac, because the doctor knew that he would then be discharged from service. He took Dapsone to control the symptoms so that his illness wasn't obvious.


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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others. OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
    • Mashed potato soup during healing
      I was on pretty much a liquid diet for 8 months waiting for my nausea to go away completely. I mostly had mashed potato soup, 1/2 fat ice cream (mostly whey, not milk), chocolate drink (no added milk) and gummy vitamins. The soup tasted yummy and I'm still alive so I figured I'd share it for people not feeling well in the beginning. I've been noticing people with alot of trouble keeping food down in recent posts. I couldn't have milk or eggs, but the cheese in the recipe didn't bother me at all. Notice the lack of spices. Makes it easy on the stomach.   Mashed potato soup: Boiled yukon gold potatoes (5lb bag) 1 package cauliflower, steamed 4-6 slices of Land O'Lakes white American cheese 4 tablespoons butter salt 16 cups homemade chicken broth, salted   Chop steamed cauliflower into teensy bits (pureed is better). Put in mixer with butter, cheese and a potato or two. Blend while slowly adding potatoes. Keep whipping for a few minutes to insure the cauliflower and potatoes are not lumpy at all. Salt to taste.   Combine 1/2 cup mashed potatoes to 1 cup salted chicken broth. Mix with spoon until mashed potatoes have completely dissolved. Enjoy. Individual servings can be frozen.   Homemade chicken broth: makes 8 - 10 cups of broth   1 organic chicken (regular chickens are too big) 1 stalk celery 1 carrot 1 large bay leaf 1/2 package fresh thyme from the  herb section of the vegetables area   Put all ingredients in pressure cooker along with 1.5 liters water. Bring to pressure. Cook for 35 minutes. Separate broth from solids. Separate broth from fat. Add ridiculous quantities of salt until it tastes like soup. Sorry I use a salt grinder so I don't have precise salt quantities.    
    • I have kidney stones...spent last night at the ER
      Hey ArtG, I saw the urologist today...unfortunately for me they can still see my stones on an xray.  Sigh.  The largest is 3x6 in my right kidney.  He does not believe I can pass this one on my own.   All of my bloodwork came back fine.  Nothing alarming in the urinalysis either. His recommendations...keep drinking tons of water.  I had 4.2 liters of urine output when I tested.  Add in a fish oil supplement.  Decrease sodium intake.  Limit meat to 10 ounces per day.  Increase dietary calcium.   Work at lowering oxalate urinary oxalate was 45.  They want it between 20 and 40.  But he gets people that are over 100 so mine is not all that high. 3 options...1. watch and wait.  Recheck in a few months to see if there is stone growth.  2. Shock wave lithotripsy.  3. Let it come out when it decides to and see what happens. I just don't know.  I hate the idea of being put under as they would do for the shock wave thing.  I've had too many surgeries already.  It scares me to be honest.  I also don't want to deal with another episode.   I don't know what I'll do.  We've got a vacation planned at the end of the month and I just want to go and enjoy that.  Not worry about kidney stones. I'm sorry to hear about your upcoming really is always something!
    • celiac disease is psychosomatic
      I know what food products are. Probiotics was a recent example I saw on the news about things labeled gluten free that were not gluten free. So, supplement labels in addition to food labels.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it. Thank You,
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member