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

How Long B4 I See Results-and Can Flare Up Occur? Dh?


ve9aa

Recommended Posts

ve9aa Newbie

Hi All,

Been reading your DH forum over the past couple days. Won't bore you with too much history, but have had weird skin outbreaks pretty much all my life from time to time. (not consistently, sometime years pass between them) Usually my hands swell up with tiny bumps, either clear or redish and are filled with lots of fluid. Sometimes whole areas swell up. Sometimes just a cluster of pimples. Then a cycle of squeezing the liquid out, hopefully drying out, then cracking, bleeding, etc. That can go on for weeks or months. I can always tell when they are coming, even before I actually see or feel a bump. There's a sensation there. HArd to describe. Often it comes at night and by morning they are filled up.

Around 2 years ago I started breaking out with huge blotches, mostly on my back. They are itchy as can be. Well, they have never completely gone away. Consistent red blotches everywhere. The ones on my back always stay , whereas other smaller ones come and go on my neck/shoulders, arms/legs.

In any case there is probably more info I could bore you with but won't at this time, although it sure seems like you great folk are a patient bunch.

I have tried in the past to eliminiate certain foods and see if there was any change. None.

Doctors have just said: "Oh you have eczema Mike, you know that", or another, "oh you have psoraisis, take this cream and it'll go away". It never does. The lotions and potions I have tried do nothing. The only thing that works at all is prednisone pills, but of course the day after I come off the pills the blotches/welts come back, my hands swell up and are usually oozey and/or very itchy.

I repair stuff for work, so I need my hands or I could lose my job. Distressing!

So, not believing my various Doctors, I thought as a "last resort" I thought I would do more web searching which brought me here. Could it be wheat and/or gluten I am allergic or sensitive to? I am highly allergic to apples/peaches/nectarines and over the years have had good years and extremely terrible years with "hay fever" type of outbreaks. The past few years I USUALLY (not always) get a bad headache when I have had more than 1 or 2 beer and on ocassion that is followed by diarreahea the next day.

So, long story short, I've been off gluten only a few days now. I thought I saw a very small improvement to my hands and back already, but then a few other tiny blisters appeared this morning.

I am praying someone will say "this is normal" (what is normal anyways anymore?>LOL) and that it will take much longer to really say if I have DH or not. Will flare ups still occur even though I am gluten-free?

...and I know this last question is highly subjective and premature but if it turns out I am gluten sensitive or have DH, will there be times, (once it clears up) that I will be able to enjoy 1 sandwich or 1 slice of pizza? I can't believe in my limited searches, just how much stuff has gluten in it ! (I guess I don't have to tell you good people, huh?)

Thanks very much,

Itchy in NB, :(

Mike

  • 2 weeks later...

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



Celiac.com Sponsor (A8-M):



nasalady Contributor

Hi Mike,

Welcome to the board!

Sorry that you're going through this....it's tough to deal with health problems which can actually affect your job. My husband is currently having a similar skin problem....we don't know what it is, exactly. He may have a combination of DH and psoriasis, or who knows? All we know is that he was gluten free, and the skin thing flared up when he had some beer (which contains gluten because of barley malt).

So he's now gluten free again, but it's certainly not going away as fast as it appeared, that's for sure!!

I've read numerous posts by DH sufferers which seem to indicate that (1) DH can take a long time to go away after you go gluten free, and (2) it can actually get worse at first before it gets better.

Also, you should know that it's pretty difficult at first to be sure that you are REALLY gluten free. Have you discarded all pots, pans, plastic containers, wooden spoons and cutting boards, etc. which either have a porous surface or have cracks/crevices where gluten can be hiding? Have you bought a new toaster? Scrubbed your kitchen and dining area down?

If you don't live alone, do you have your own area where you prepare gluten free food which no one is allowed to contaminate with gluten? Do you have your own condiments in the fridge? Your own peanut butter? Your own jelly? If not the crumbs on someone else's knife will gluten you at some point. Have you checked all of your medications, shampoos, lotions, creams, etc. for gluten? Pills usually contain starch, so they may contain gluten. The starch may be corn starch or something harmless, but you have to check.

I'm not trying to scare you, but I was CONSTANTLY being glutened until I put our whole family on the gluten free diet. Some people report being able to live in the same house with gluten as long as they're careful, but that wasn't my experience.

In any case, hopefully one of the other people who hang out here who've had more experience with DH will give you some answers soon.....

Good luck!!

JoAnn

skyyblues Newbie

I am in the same boat as you somewhat...I think I might have DH. I started the Gluten Free about 2 weeks ago. My stomach feels better than it has in over 20yrs. At first my rashes started to fade, then I had one of the worst reactions I have ever had. The right side of my face and left eye swelled up and broke out during the course of several hours. I had to go to the ER where they did the usual, a bunch of prednisone and benadryl. I was out of town and exposed to so much that there is no way to tell what caused it.

My hands seemed to be clearing prior to that with no new blisters or anything. I was so excited... Now I have weaned off the prednisone, as quickly as I could, and I have a full blown case of dishydrotic exzema again. I just keep seeing more and more blisters forming. I still think the diet is working and from what I have read it will probably get worse before it gets better.

I have not not de-glutened my kitchen yet but I plan on it. My husband thinks I am nuts but he does't have my issues. If I knew pig poop would help me I would roll in it, eat it whatever it took just to feel "normal". Not that I even remember what that is and I am not sure it is all that anyway! I don't mean to bore you but it was nice to see your reference to little blisters as I knew exactly what you are talking about. At least in here people understand and you don't have to feel so.........can't think of a good word to use...

Take care and thanks for reading... Sorry for rambling... May your blisters be few and far between...

Becky Racine, WI B)

Archived

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

  • 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. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.