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

willstewartdc

Recommended Posts

willstewartdc Newbie

Hey everyone. Just wanted to say I am new here but I appreciate all the information everyone contributes. I was recently diagnosed with gluten intolerance. I do not have any of the digestive issues that come along with it but I get a terrible rash (DH) primarily on my knees, elbows, buttocks and now face and upper back. I have been trying to detox and strictly watching what I eat. I have been eating nothing but fruits, veggies, lean meat and drinking water like mad the last month and a half now. The only thing that seems to keep my skin under control is if I take a corticosteroid. If I stop taking it, within a few days I start to get the rash again. Does anyone know of a good detox to help balance the gut and flush gluten? I am currently on a probiotic, fish oil, drinking apple cider vinegar and eating sauerkraut by the forkfull. Thanks in advance for any advice and help.

 

In good health!


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



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

Hi Willstewart and welcome.

 

Just so you know,  DH is a diagnosis of Celiac.  Gluten Intolerance can have a number of rashes associated with it.  I take it you haven't been tested?  Anyway, glad your in good health and feeling well.

 

Good Luck.

 

Colleen

kareng Grand Master

There is nothing to " flush" gluten out. It just goes out with the garbage like any other food waste. Gluten molecules don't float around and hide in the body.

Read around. If you truly are diagnosed with DH, many find a low iodine diet helps. Doctors will prescribe Dapsone ( spelling?) for those diagnosed with DH to use for a while. Many find it very helpful. You might want to talk to the dermatologist that diagnosed your DH about a prescription.

willstewartdc Newbie

Colleen,

 

   I had a biopsy done the last time I had a bad breakout. It came back 100% as gluten reaction. Like I said, no GI issues, just the rash as far as I know. I am just trying to get it out of my system so that I do not have to stay on a steroid. I would prefer to not have skin flare ups every few days without it. My doctor did not feel I needed any further testing. He did want to put me on Dapsone but I refuse to take it.

Hi Willstewart and welcome.

 

Just so you know,  DH is a diagnosis of Celiac.  Gluten Intolerance can have a number of rashes associated with it.  I take it you haven't been tested?  Anyway, glad your in good health and feeling well.

 

Good Luck.

 

Colleen

squirmingitch Veteran

Did the biopsy come back positive for dh? "Gluten reaction" does not tell us if you were dx'd with dh. Furthermore, if you do have dh then steroid cream is helping you say but even topical steroids make the rash flare terribly when they are withdrawn. You either use the cream for years until the antibodies get out from under your skin or you sweat it out w/o the steroid cream until you calm from the backlash of the steroid. 

I will agree that there's no way to flush the antibodies out of your skin if you have dh. You have to wait it out until your body takes care of it. For some (with dh), this can take years. I'm sorry to tell you this but better you know now. For those of us with dh, quitting gluten is not an instantaneous magic bullet. There are antibodies hanging around under our skin & we will only be free of the rash when those go away AS LONG AS WE ARE PRISTINE IN OUR gluten-free DIET & DO NOT GET CROSS CONTAMINATED!

willstewartdc Newbie

Did the biopsy come back positive for dh? "Gluten reaction" does not tell us if you were dx'd with dh. Furthermore, if you do have dh then steroid cream is helping you say but even topical steroids make the rash flare terribly when they are withdrawn. You either use the cream for years until the antibodies get out from under your skin or you sweat it out w/o the steroid cream until you calm from the backlash of the steroid. 

I will agree that there's no way to flush the antibodies out of your skin if you have dh. You have to wait it out until your body takes care of it. For some (with dh), this can take years. I'm sorry to tell you this but better you know now. For those of us with dh, quitting gluten is not an instantaneous magic bullet. There are antibodies hanging around under our skin & we will only be free of the rash when those go away AS LONG AS WE ARE PRISTINE IN OUR gluten-free DIET & DO NOT GET CROSS CONTAMINATED!

Yes I had a positve for DH. I know there is no magic bullet. I am just trying anything I can to speed up the process. I know getting your gut in balance is a big key. Thanks for all the replies so far. I just didn't know if anyone had any detox or oils or anything to help expidite the whole thing.

squirmingitch Veteran

Well, welcome to the forum you never wanted to be a part of. We all wish we had a key to speeding up the process. I haven't seen any medical answers to that question nor have I read anyone who has dh who found a way to speed it up. Unfortunately! It's a matter of the antibodies. Gluten is not under the skin, the antibodies are. One would have to find a way to get rid of antibodies. Sigh.

 

Here is a link for the low iodine diet which may really help you b/c most of us get bad flares from iodine & that is medically documented. Check vitamins for iodine content also -- most contain it. And of you go more than a month or two on it, then you will want to get your thyroid checked on a regular basis to make sure you aren't damaging it.

Open Original Shared Link

 

Here's a link for help with the itch....etc....

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/

 

Read this thread too:

https://www.celiac.com/forums/topic/107452-i-think-i-have-it-please-weigh-in-on-my-situation/

 

In the later stages, I also found soaking in a hot epsom salts bath to help. And along the way, some things that helped at some point would stop helping & back & forth so you'll have experiment & may have to keep changing when something stops working for you & then you may go back to that & it helps again. In other words --- whatever gives you relief!

 

Drinking lots of water is always a good thing & I can't say that it flushed any antibodies out but it certainly doesn't hurt. I have always been a big water drinker though.

 

With dh, most of us do not get the GI symptoms that regular celiacs do or we get them much less severe & fewer symptoms. You may be surprised as you go along & find things you thought were not symptoms, in fact were symptoms. We do still have damage to our villi though even though we are "symptomless". 

 

DH is extremely sensitive to the tiniest amount of gluten!!!! This is why I counsel everyone with dh to be ultra cautious in their diet & don't even risk eating out unless it's a totally gluten-free restaurant. If we get cc'd then we just dump more antibodies under our skin & prolong our torture & that can add months to years to our dh prison sentence.

 

If you have any questions or just want to vent & rant & rave --- we're here. Been there, done that.


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Also, if you wouldn't mind...... would you please go to this thread & post the name & location of the dermatologist who did your biopsy & dx'd you? And put dermatologist in the title of the thread as well as the city. That could really, really help out someone in that area who is looking for a derm who knows what they're doing & knows how to recognize & biopsy dh correctly. 

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

 

Thanks!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,076
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    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

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.