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

New Here, Need Some Opinions Dh Hives Eczema


clairedevaux

Recommended Posts

clairedevaux Newbie

Hi everyone! I am new to this forum, but not new to DH/celiac. I have undiagnosed DH that has been fairly well controlled for 27 months, but am now in the middle of some type of flare that I am having trouble pinpointing. I started with "contact dermatitis" and small eczema patches when I turned 19. Unbearable itching at night. GP prescribed steroid cream which helped and the rash did not grow or spread. At 24 after having my first baby, the eczema on my hands got really bad. GP sent me to dermatologist who told me that as a young mother, my hands were always in water, soap, wipes, etc. which was causing my extremely bad contact dermatitis. Again, a stronger steroid was prescribed. At this point I wasn't getting much relief from the creams. At 25 during my 2nd pregnancy I developed large red raised patches on the inside of each elbow and on my neck. OB said to put hydrocortisone cream on it. Stayed with me throughout the pregnancy. After the pregnancy I went through a long period of time where my hair was brittle and falling out, my skin totally dried up (up to then I had always had very oily skin) and my whole body became covered in large discoid shaped rashes. GP sent me to derm. who thought I might have non-Hodgkins subcutaneous lymphoma. He sent me to MUSC (Medical University of SC) for a biopsy of the lesions for the lymphoma and discoid lupus. The biopsy cam back negative. I was told just extreme eczema. Given super high power steroid cream and told to coat my body twice a day with steroid and aquaphor. Eczema improved slightly but was still present. Not long after that I had a mild anaphylactic reaction to ibuprofen that included hives that never went away. I was diagnosed with chronic idiopathic urticaria and put on 3 zyrtec a day, 2 benadryl every 4 hours, cimetidine every 12 hours and lorazepam at night. At this time I also began to have sever anxiety and panic attacks, mostly related to fear of having another anyphylactic reaction. Continued like this for about 2 years, trying many things such as no caffeine and switching to a vegan diet to try to make my system mor alkaline. Towards the end of this time my nephew was diagnosed with Celiac after 18 months of daily diarrhea that my SIL was told was "toddler dairrhea." I got pregnant for a 3rd time and by the 2nd trimester the majority of my symptoms were gone. I was still having chronic hives, but could take 1 zyrtec and 1 benadryl to control them. About 6 months after my daughter was born, my symptoms resumed, with a vengeance. My hands were covered with small fluid filled blisters that would pop and ooze and bleed and scab. Washing dishes was h*ll. I could barely straighten out my hands. I spent most of my time in cotton gloves with plastic gloves on top. The hives got worse too, mostly over my stomach. When my daughter was 8 months old I went gluten-free at the urging of my SIL. I got much WORSE before I got better. At this point I was waking up every morning with my eyes swollen shut and itching uncontrollably. Sometimes my lips and mouth would swell. I was barely functioning. Eventually, gradually, all of my symptoms improved. I continued to have the occasional DH outbreak on my hands that would subside, which I attributed to being glutenated at a returaunt, etc. Panic and anxiety lessened to may be 1 attack every 6 months. Hives under control with only 1 zyrtec every 3 days or so. All that being said, after doing so much better for a while, I am currently experiencing a resurrgence of my hives and am back on 2 zyrtec 1 cimeitidine and 2 benadryl a day with no change in diet. I know I was exposed 2 weeks ago to gluten, but the hives came back about 6 weeks ago and I have no DH rash, just the hives. I am just now reading about the iodine issues and am going to go dairy free and am thinking that caffeine/coffee is also aggravating things. Does anyone have any experience with DH, chronic hives and dermographism? Any ideas as to why my immune system is freaking out again? Thanks and sorry about the LONG post!


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



Celiac.com Sponsor (A8-M):



Di2011 Enthusiast

Oh my I wish I could help!!! :(

Are you keeping a diary of food and symptoms?

Have you got rid of all cleaning, bathroom gluten containing products?

Is your house gluten free?

My (undiagnosed) DH has been severe and head to ankle. I can't tolerate any of the wheat/gluten derived chemicals/additives (xanthan gum, guar gum, vit E etc etc etc) so I wonder if these might also cause you problems? My reactions are severe and not like most peoples experiences with these things. I wash the dishes with gloves to avoid detergent and have only used bicarb soda in the bathroom.

At first I thought I was getting paranoid but I've been on this regime for about 2-3weeks now and it has made a difference. If you think about all the other chemicals etc that I am avoiding it could be that my skin just needs a mighty good break from them all.

This morning I ate nothing but raisins and have had a complete nightmare of a day itching intensely all over. As usual it is hard to pinpoint the real culprit! I experiment a lot but I also don't have 3 children :blink:

pricklypear1971 Community Regular

Hey there, sounds like you're having a really hard time.

I have DH (or what is apparently DH)...

Sounds like you have the DH under control but hives are a problem now?

Hives are tough, since the trigger can be different for everyone.

Salicylates, bromides and iodine are both known to set off DH. Sals are known to be a hives trigger.

I'd keep a diary of what you do, eat, touch and maybe you'll notice something.

My DH is slightly dermagraphic - it flares up with contact but only if it's there to begin with. Dermagraphic hives are a different beast, since the hives are caused by the contact/pressure.

Have you had vitamin panels run? What about hormones? Have you've noticed hives come/go with your cycle?

rosetapper23 Explorer

I've been plagued with DH, hives, and dermatographia. The DH has been under control for the past eight years because I followed a strict gluten-free, iodine-free diet. However, when my thyroid failed four years ago and I started taking thyroid meds (which always contain iodine), I ended up with hives across my back and on my butt. Nothing helps get rid of them--I've tried medications and even acupuncture. For me, it is definitely due to an allergy to iodine, but I can't go without the thyroid meds.

Perhaps the iodine elimination will help you....but it's sometimes difficult to pinpoint the cause of hives. In the past, I've broken out in hives that could be attributed to TWO products, rather than a reaction to the use of only one of the products. It was extremely difficult to figure out what was causing the hives, since when I used each product individually, I had no reaction....but if I used them at the same time, bingo! Hives! You might try eliminating a number of products and then adding them in one by one. The hives I just described occurred from using a particular laundry detergent while I was also using an Avon moisturizer.

eatmeat4good Enthusiast

Salicylates could be bothering you if you are in an outbreak of DH...especially since you had the anaphalactic reaction. You might want to limit salicylates...the effect is cumulative and it might be that you just hit your max on salicylate tolerance. I have DH. It is sensitive to gluten, iodine, and salicylates. It took me a freaking year to figure out what foods to avoid and it is much more than gluten. I had active DH for 7 years. I have been healing for one year.

Your story sounds like a DH nightmare. So glad you figured out what it was. Now you just have to figure out this reaction. It really could just be a gluten reaction ya know? DH is very sensitive to gluten and my reactions to cross contamination last for weeks. Literally weeks. So be patient and consider salicylates too to see if you are ingesting higher than usual amounts of sals.

Here are the links to liniting iodine and salicylates. I found these extremely helpful.

Open Original Shared Link

Open Original Shared Link

Di2011 Enthusiast

Salicylates could be bothering you if you are in an outbreak of DH...especially since you had the anaphalactic reaction. You might want to limit salicylates...the effect is cumulative and it might be that you just hit your max on salicylate tolerance. I have DH. It is sensitive to gluten, iodine, and salicylates. It took me a freaking year to figure out what foods to avoid and it is much more than gluten. I had active DH for 7 years. I have been healing for one year.

Hi eatmeat4good,

I have been incredibly strict with my eating/handling of pretty much everything lately. Tonight when I read this I kind of had a crazy moment. Lots of people post about sals being a problem with Celiac/intolerance etc but I hadn't read it in relation to DH.

So now, after 6 months on this forum, and 6 months head to ankle I finally read about sals.

I was whinging to everyone yesterday about raisins making me itch. I had eaten nothing but raisins (we call them sultanas) and had thought I'd found a good, natural sweet thing I could eat. So there I was going on about it: "That *#(*&$( wheat is everywhere" ((I don't actually swear much unless I'm really really mad BTW))

And what is the top of the list of "very high" sals on your link - "all dried fruit".

I still have soooo much to learn. And LOTS more testing. Every day gets better even though I have the bad days.

clairedevaux Newbie

Thanks everyone for all of the advice. I have started with the low iodine diet, and that has seemed to help a little,. I need to reasearch the low salicylate a little more in order to wrap my head around it. I am also thinking about getting tested for Chronic Autoimmune Urticaria. After doing some more research over the past few days, I feel like this may be the cause of my chronic hives, and that the DH/Celiac aggravated that. So many details and possibilities can be really overwhelming!


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



Celiac.com Sponsor (A8-M):



clairedevaux Newbie

Thanks everyone for all of the advice. I have started with the low iodine diet, and that has seemed to help a little,. I need to reasearch the low salicylate a little more in order to wrap my head around it. I am also thinking about getting tested for Chronic Autoimmune Urticaria. After doing some more research over the past few days, I feel like this may be the cause of my chronic hives, and that the DH/Celiac aggravated that. So many details and possibilities can be really overwhelming!

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. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    2. - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    4. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

    5. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA


  • Celiac.com Sponsor (A19):



  • Member Statistics

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

    Exhausted-momma
    Newest Member
    Exhausted-momma
    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

    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.