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

3+ Weeks Of Flare-ups And Counting

splash

By splash
in Dermatitis Herpetiformis

Recommended Posts

splash Rookie
splash
Posted

I have been gluten free for 1.5 years and haven't had any major DH symptoms since I started the diet - until now. When I was a teenager I had the worst rashes on my hands, and at the time we thought it was "seasonal" (that seems hilarious now). It would mainly show up on my palms and between my fingers, itchy blisters either like heat blisters or deep below the skin that would dry up and crust leaving raw skin.

Just in the past month, after almost no blisters for 1.5 years, I am having flare ups almost daily again on my hands, even now that I've spent two weeks not eating out, not taking any chances. Have others experienced that the blisters keep popping up weeks after a reaction? I can't have had a very significant amount of gluten - the most that I can think of is that the guy I was dating at the time drank beer before kissing me, and now thinking back I do remember noticing the beer on his breath. And by the way, can I state for the record that this possibility is so disturbing to me - what an annoying thing to have to tell someone when you're first dating!

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

Celiac.com Sponsor (A8-M):


YoloGx Rookie
YoloGx
Posted

I don't get DH however I have gotten glutened several times from kissing guys I have dated. Each time I got a major reaction. And yes its often been beer or supposedly safe whiskey. (no, I don't drink alcohol...)

I agree it really is socially inconvenient to put it mildly. You just have to be clear on this however. I am now imagining an invisible chastity belt on my lips! Honestly it makes me less than enthusiastic to kiss someone unless I absolutely know it isn't a problem for him to brush and rinse his teeth and that he gets it that I need him to do it. Not exactly first date material, however for us I suppose it does separate the good from the bad so to speak. The thoughtful from the jerks more likely. Some guys even find it kind of sexy that they are not allowed to kiss... So I turn my head and they kiss my neck. Makes me think of the old vampire myth honestly...

An old boyfriend came to visit and brushed his teeth but didn't rinse afterwards!! It didn't occur to me I needed to ask since I had explained why I needed him to brush his teeth. Just four hours after we kissed I developed the flu/sinus infection that was worse and lasted much longer than anyone else I know who got it. My ex boyfriend felt bad but interestingly didn't apologize. I have been told by many I shouldn't be mad at him. It was a simple mistake. I suppose it was however it does indicate in part why he is my ex. The flake factor since I had explained why I needed him to brush his teeth.

Beside a virulent sinus infection I got many of my usual gluten exposure symptoms. Since then I have had to be even more careful of what I eat due to damaged villi. Am finally over it completely as of today, a little over a month later!!

All of the above however does make me a little less than enthusiastic to get out there and date right now. What it does for me is tell me that I have got to be more careful... and more specific even with this. To make a joke of it I am now saying not only do I need to avoid junk foods, I also need to avoid junk dates! Despite thinking I have been selective it seems I haven't been selective enough...For now however I have decided to focus more on other things like my art, work and friends etc.

I don't know if this helps you at all but it is what I have been going through.

Bea

happygirl Collaborator
happygirl
Posted

Open Original Shared Link

"Q: What triggers DH?

The simple answer is ingested gluten. But iodine (potassium iodide, iodized salt, kelp), some anti-inflammatories and stress can exacerbate the disease. An area of controversy is whether or not gluten can be absorbed through the skin. Most medical experts say no, only dietary gluten is of concern.

DH can be "exquistely sensitive" to gluten. Since the skin may not be rid of the IgA deposits for 2+ years after starting a gluten-free diet, flare-ups may continue to occur. The skin response is much slower compared to the healing of the intestinal mucosa. In particular, outbreaks of facial and scalp lesions while on otherwise adequate treatment is not uncommon."

splash Rookie
splash
Posted
  • Author

Okay that is helpful - so if it takes 2 yrs for the gluten to get out of my system (and my skin) I don't need to start thinking something wacky is going on for at least another 6 months. Somehow that actually is comforting. It still does seem crazy, though, that new blisters keep appearing every day or so for several weeks on end. I just figured a "flare up" meant that you have an incident one day, maybe triggered by stress or a bored immune systems or a bf's beer-lips or whatever it is, and then it goes away. Where are these new blisters coming from? But I take it I need to have patience.

And thanks, by the way, to Yola - glad I'm not alone. I can think of men who have been in my life who would be much more understanding that the most recent one ;-) Not that he's a jerk, I think he just couldn't wrap his lazy head around the idea that the sensitivity could be that high.

YoloGx Rookie
YoloGx
Posted

Hi Splash. Um, yes, guys...

Anyway about the DH--others I have advised here who do have DH have found that taking liver detox herbs really helps assuming they aren't infused in alcohol or immune stimulants. The reason being is that the liver gets overloaded downriver of the villi getting flattened when we get exposed to gluten due to undigested proteins then crossing over into the bloodstream. Thus dandelion root or milk thistle (silymarin) caps can be really helpful. Meanwhile marshmallow root caps help calm down the villi.

Eating lots of parsley and other green veggies can help too plus exercise, saunas. Mud packs on the hands and feet (bentonite or green clay mixed with a little water to make a paste with a tablespoon of apple cider vinegar) for 20 minutes at a time is excellent...

Actually apple cider vinegar with water is excellent all by itself. Helps the body detox, digest food better and get to the right ph... Bragg's is best.

I used to have all kinds of skin conditions but they have gone away for the most part except for a nagging problem with yeast overgrowth in my nethers. I used to get tiny pimples all the way down my back to my buttocks as well as in my scalp and on my necks around the nodes and the sides of my face and my chest. This was not as a teenager but rather in my twenties. This changed after I went off gluten for the most part in my thirties and was doing detoxing all the time, including things like yellow dock or Oregon grape root plus started eating a mostly cave man diet since back then what else was there to eat?? The main thing here is that not only diet helped but also the herbs... Never had it on my hands however so I don't know if it was clinical DH.

My mother does have it however. She got a recurrence starting two years ago when she was 92. She says it itches terribly. She still cheats when she can however since she is unconvinced and honestly lonely and thus a little depressed. Her first episode was as a child of four. She was treated for celiac sprue til she was twenty. Then off it since she thought she outgrew it plus she never really appreciated having to be so "different" and thus did not tell us we needed to be eating differently too...

Bea

ChemistMama Contributor
ChemistMama
Posted

Yolo-

Happy Girl is right, there are other things which trigger the reaction. If you've been accidentally glutened, even slightly, then also have taken an anti-imflammatory like advil or naproxen, the reaction is greater.

Are you watching your iodine intake? I'm taking iodine-free multivitamins and, for awhile now, am watching my intake of shellfish and seaweed, two things rich in iodine. I was on vacation (still on gluten, before I was disgnosed) and had a cold, so I took a full dose of multi-vitamin (300 mcg iodine) also containing seaweed extracts, and I broke out something fierce. I was supposed to go on a 'gluten challenge' since my biopsies were negative and my bloodwork was incomplete, but after having 3 oz of beer I was in pain for over a week, and it's still bad. No more gluten challenges for me, I don't care if I"m officially diagnosed or not!!!

I heard about the "gluten kiss" from the Gluten Free Girl's blog, she made a comment about having her then boyfriend brush his teeth before they kissed...and when I went gluten-free I reminded my husband of this too, so how a kiss on the cheek is par for the course after he's had a beer. ;)

YoloGx Rookie
YoloGx
Posted
Yolo-

Happy Girl is right, there are other things which trigger the reaction. If you've been accidentally glutened, even slightly, then also have taken an anti-imflammatory like advil or naproxen, the reaction is greater.

Are you watching your iodine intake? I'm taking iodine-free multivitamins and, for awhile now, am watching my intake of shellfish and seaweed, two things rich in iodine. I was on vacation (still on gluten, before I was disgnosed) and had a cold, so I took a full dose of multi-vitamin (300 mcg iodine) also containing seaweed extracts, and I broke out something fierce. I was supposed to go on a 'gluten challenge' since my biopsies were negative and my bloodwork was incomplete, but after having 3 oz of beer I was in pain for over a week, and it's still bad. No more gluten challenges for me, I don't care if I"m officially diagnosed or not!!!

I heard about the "gluten kiss" from the Gluten Free Girl's blog, she made a comment about having her then boyfriend brush his teeth before they kissed...and when I went gluten-free I reminded my husband of this too, so how a kiss on the cheek is par for the course after he's had a beer. ;)

I don't get DH anymore if that is what I used to have (I have out and out celiac) but my mother does. I'll make sure she doesn't take ibuprofin etc.! Do you know if aspirin OK or not? My sis is having my mom take a little every day...

Bea

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

Celiac.com Sponsor (A8-M):


  • 6 years later...
asafk Newbie
asafk
Posted

Hi. Very informative site!

wanted to share that spirulina+aloevera+water(or colloidal silver if you got any) are a great combo for the rush. in general start with aloevera add a tea spoon of spiruling and abit of water or CS. mix well and make sure its not too watery. experiment with that....

 

apply large amount all over the rush. massage it, that all the area will be green. Try do it fast because it will dry quite fast. now, you need to wait for 10 minutes for it to dry on your skin. when its dry you can saftly wear cloths over it. I found it very helpful all around  :)

Asaf

squirmingitch Veteran
squirmingitch
Posted

Just to let you know this thread is over 6 years old. I haven't seen any of these posters on here in years & years.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities. Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement. 130 times the safe upper limit. 130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms...
    2. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
    3. JudyLou
      - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankle...
    4. marzian
      - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      This is very exciting news. The research lends itself to preventing the immune system in other autoimmune disorders from getting out of sorts. As someone with a compendium of autoimmune disorders I feel a bit of hope.
    5. Jmartes71
      - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week, in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,144
    • Most Online (within 30 mins)
      7,748
    Marsu
    Newest Member
    Marsu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
×
×
  • 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.