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

Does Dh Disappear And Reappear?


anti-soprano

Recommended Posts

anti-soprano Apprentice

Hi All,

This question is regarding my 2 year old niece who has been breaking out in hives as of late.  I am a celiac without DH symptoms, my sister is likely a celiac but undiagnosed (gluten free), my niece's paternal grandmother and great grandmother are also celiac.  So the kid is in the middle of a genetic minefield.

 

Apparently, she has been breaking out mostly at night and wakes up in the morning with hives/rash all over her belly, back, and sometimes her arms and legs depending on how bad it is.  The rash disappears pretty quickly.  The first time they took her into the pediatrician and it was no longer there at that point.  This morning, it disappeared as they were eating breakfast.  She is left with a few random hives throughout the day, but not the all over rash.  She does eat gluten, especially at school and she had a roll last night at dinner.  This could be so many things, but I know very little about DH.  Does it come and go that quickly or does it stick around for long periods of time???

 

She does have some GI symptoms (Constipation) which is leading me to ask this question..

 

Thanks for your help!

Shellie


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

Hives are generally due to an allergy. Does she have a pet that sleeps in her bed? Anything else she is exposed to overnight that she isn't exposed to any other time? I'm quite familiar with hives (which aren't DH to the best of my knowledge/experience) and it's normal for me to have them crop up, then go within hours once I'm no longer in contact with the allergen that caused them. Faster if I take something.

cyclinglady Grand Master

When my daughter was sick one weekend, she kept asking for Orange juice. We complied thinking she needed to stay hydrated even though we normally do not allow juice (eat the fruit). She broke out in a rash and took her to Urgent care thinking she had some weird virus. They were not concerned about the rash. It went away. Then a few months later, I was juicing fresh oranges from our abundant tree and she broke out again. Tested her a few days later after the rash had gone and it came back. No OJ for her. She does eat oranges now but in moderation.

Maybe allergies for your niece?

anti-soprano Apprentice

Hi Ladies-

The first thing I thought was allergies- most likely something related to food (as a child I broke out in hives to strawberries and chocolate milk and it eventually faded away).  But seeing as though I don't have and therefore aren't familiar with DH along with her genetic chances, I wanted to check.  So I'm assuming that DH sticks around without fading quickly while hives can come and go- is that correct?

cyclinglady Grand Master

DH is supposed to be INSANELY itchy and lasts and lasts long after exposure to gluten. Scabs form over the water-filled hives as you scratch even in your sleep. Folks get scars from scratching.

Allergies affecting the skin can be itchy, but I do not think they would be in the insane category. I get hives from the cold that wheal up and itch, but they resolve quickly as do some of my reactions from meds. An antihistamine usually does the trick. Nothing seems to help DH except for strict avoidance.

I am knocking on wood now, hoping that I will never experience DH!

anti-soprano Apprentice

DH is supposed to be INSANELY itchy and lasts and lasts long after exposure to gluten. Scabs form over the water-filled hives as you scratch even in your sleep. Folks get scars from scratching.

Allergies affecting the skin can be itchy, but I do not think they would be in the insane category. I get hives from the cold that wheal up and itch, but they resolve quickly as do some of my reactions from meds. An antihistamine usually does the trick. Nothing seems to help DH except for strict avoidance.

 

Thank you!!  This is exactly what I wanted to know.

Adalaide Mentor

I never realized the rash on my back was DH. It came and went, but never quickly, over the years. My lower back and my neck are covered in scars from scratching until I bled and scratching more. I ruined shirts, and kept scratching. It took it clearing up, then breaking out again once after my diagnosis for me to figure out what it was. It was never large hive sized swollen wheals, it was always small gross, nasty things that made me scratch my skin right off my body. It can be different for other people, but I've never heard of it described like hives which is why I mentioned allergies. (That isn't to say with her genetic jackpot that she shouldn't be being tested periodically.)


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



Celiac.com Sponsor (A8-M):



  • 4 months later...
Rita L Newbie

DH is supposed to be INSANELY itchy and lasts and lasts long after exposure to gluten. Scabs form over the water-filled hives as you scratch even in your sleep. Folks get scars from scratching.

Allergies affecting the skin can be itchy, but I do not think they would be in the insane category. I get hives from the cold that wheal up and itch, but they resolve quickly as do some of my reactions from meds. An antihistamine usually does the trick. Nothing seems to help DH except for strict avoidance.

I am knocking on wood now, hoping that I will never experience DH!

The itching and burning is insane. I have scabs forming now. I'm only on my 3rd major breakout but 1st to figure out what it is. I've been working up to this for years but on a much smaller scale. I've been gluten free for years so I need to figure out what my other triggers are. Back to the food diary again....

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. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,408
    • Most Online (within 30 mins)
      7,748

    Angela VT
    Newest Member
    Angela VT
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.