Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Had To Go Completely Gluten Free Due To Dh...have Some Questions. Please Help!

labsr4me2

By labsr4me2
in Dermatitis Herpetiformis

Recommended Posts

labsr4me2 Rookie
labsr4me2
Posted

Recently I had to go COMPLETELY gluten free due to DH. I had to get rid of my laundry soap, make up, shampoo, conditioner, deoderant, etc. I had to replace everything with gluten free products.

Is this common?

I am so super sensitive that I am now afraid to even touch people out of fear that they do not use gluten-free products.

I went to a party yesterday and gave some people hugs (I did not wash my hands afterwards) and then I ate my gluten free protein bar and an Ensure (same thing I eat every evening). I got sick. Are my fears correct? Could I really be that sensitive that I must wash between EVERYTHING (even shaking hands or hugging)?

I am afraid to go out in public right now do to me being so sensitive.

I am also wondering if I REALLY am this sensitive....would sex with my spouse who eats gluten being a contamination due to gluten in his system?

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

I don't have DH myself, but I will try to answer some of your questions.

Some folks with DH are sensitive to skin contact with gluten. This may be limited to those with active DH, where the lesions allow the gluten to penetrate. It seems that normal, healthy skin is impermeable to gluten.

I work in contact with the public, and my business sells some products which contain gluten. I wash my hands frequently, and always wash thoroughly before eating at work. I am less obsessive at home, since our home is 100% gluten-free.

Gluten is not present in bodily fluids and secretions, even if the person eats gluten. Perspiration, saliva, and other secretions of interest to your last question are gluten-free. However, although saliva itself is gluten-free, gluten can be introduced into saliva in the mouth as a result of the person having consumed gluten recently. A thorough brushing of the teeth is a good idea before engaging in open-mouth kissing.

There is some debate about whether breast milk can contain gluten from the mother's diet, but I don't think that is a concern for you. ;)

Krysten Newbie
Krysten
Posted

I had a situation where I used hand soap in a bathroom & got sick hours later since there was still residue on my hand even though I had washed them again at home with my safe soap. Recently, I saw a friend of mine have a reaction on her cheek after hugging a friend & we figured it was either the friend's makeup or a hair care product that caused the reaction. So I understand your fear. I try to bring a bar of my own soap to wash in between shaking hands and try to avoid getting too close when I hug someone. Sometimes I feel like maybe I'm being paranoid, but every time I let my guard down I get sick, so now I just try to be as careful as I can. But it's particularly hard with women since they have lotion on their hands, hair pomade, etc.

labsr4me2 Rookie
labsr4me2
Posted
  • Author

Thank you. I was starting to feel like it was just me. I did buy some clorox wipes for the house and some for my purse. Just in case I am unable to get to soap after an encounter.

I just call myself "Monk" now when ever I go any where. Hahaha.

I am glad to know that others are experiencing these same things (not that I would wish them on anyone) but I am glad that I am not the only one. :D

Krysten Newbie
Krysten
Posted

Elisabeth Hasselbeck's new book made me feel better, too because she talks about how careful you have to be especially with cross contamination. I had a big improvement when I changed to gluten-free beauty products--shampoos, etc. And Elisabeth talks about how she got sick after gluten-free hairspray was used on her & she was in a cloud of it. So many things I didn't think about! Yeah, it's scary, but you are not alone ;)

Thank you. I was starting to feel like it was just me. I did buy some clorox wipes for the house and some for my purse. Just in case I am unable to get to soap after an encounter.

I just call myself "Monk" now when ever I go any where. Hahaha.

I am glad to know that others are experiencing these same things (not that I would wish them on anyone) but I am glad that I am not the only one. :D

lovegrov Collaborator
lovegrov
Posted

EXTREMELY unusual and makes me wonder whether there's something else happening. I had DH for more than 20 years and I can touch gluten all day long with no reaction as long as I wash.

As said before, secretions of whatever sort do NOT contain gluten.

richard

  • 3 weeks later...
lkonya Newbie
lkonya
Posted
Recently I had to go COMPLETELY gluten free due to DH. I had to get rid of my laundry soap, make up, shampoo, conditioner, deoderant, etc. I had to replace everything with gluten free products.

Is this common?

I am so super sensitive that I am now afraid to even touch people out of fear that they do not use gluten-free products.

I went to a party yesterday and gave some people hugs (I did not wash my hands afterwards) and then I ate my gluten free protein bar and an Ensure (same thing I eat every evening). I got sick. Are my fears correct? Could I really be that sensitive that I must wash between EVERYTHING (even shaking hands or hugging)?

I am afraid to go out in public right now do to me being so sensitive.

I am also wondering if I REALLY am this sensitive....would sex with my spouse who eats gluten being a contamination due to gluten in his system?

Hello, I am Celiac and I also have thyroid disease as well as DH. The sensitivity you are experiencing is very common with DH. The good news is that in time the DH will become less severe and alot of it will go totally away and stay away if you stay allergen free and take your iron (if you are anemic which I am assuming you are) AND you must be on a very good Vitamin B source...the Vitamin B must be a multiple B complex of all the B's. Alot of my DH is gone approximately 80% of it and I am looking forward to the rest of it leaving as well...it took about 8 months of being allergen free and taking the vitamins (which I take a good rotation of many). Try not to get discouraged, it will just take time. The sensitivity also gets better the longer you remain allergen-free. Just try not to let other people talk you into eating or touching things you shouldn't have...if you have a question about it, DON'T ingest it or put it on your skin. I have to use everything totally allergen free. I am allergic to wheat, gluten, soy, yeast, and eggs. I have a one year old that is allergic to all of those and more. We watch everything we do. It will take about 6-8 months for your system to calm down and you will notice over time that the DH will go away. Good luck and please do not hesitate to shoot me an email if you like. Linda

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,767
    • Most Online (within 30 mins)
      7,748
    Marian Glisson
    Newest Member
    Marian Glisson
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Help with genetic testing

      By Scott Adams · Posted

      The genetic testing results you provided indicate that your child carries two copies of the HLA-DQ2.5 beta chain (DQ Beta 1 *02:01, *02:01), which is a high-risk genetic marker for celiac disease. However, the alpha chain (DQ Alpha 1 *05:01, *05) is only partially present, as HLA-DQ2.5 typically requires the alpha chain *05:01 paired with the beta chain 02:01. Since your child has two copies of the beta chain (02:01) but only one full *05:01 alpha allele (the other appears truncated as *05), this suggests they are heterozygous for HLA-DQ2.5 rather than homozygous. The term "permissive for celiac disease" means your child has genetic susceptibility but not necessarily the highest-risk genotype (homozygous DQ2.5). Since celiac disease development also depends on environmental triggers and other factors, further testing (such as antibody screening or biopsy) may be needed to confirm a diagnosis. Consulting a genetic counselor or gastroenterologist can help clarify these results and next steps.
    • Jenny (AZ via TX)
      gluten-free stool softener needed for after surgery

      By Jenny (AZ via TX) · Posted

      Thanks!
    • DebJ14
      Finding gluten free ingredients

      By DebJ14 · Posted

      As my doctor said, you don't have to eat breakfast food for breakfast.  I may have a leftover piece of chicken and left over squash or eggs or I am actually more likely to skip breakfast as I do intermittent fasting.  In that case I eat lunch around 11:30 and have some guacamole and a salad with chicken or tuna.  For dinner I have pork, shrimp, chicken, lamb, or turkey with half a baked sweet potato and some broccoli, green beans, beets, carrots or cauliflower.  I do not eat any grains on the advice of my doctor.  I do not eat commercially processed products, even if they say they are gluten-free.  I make Warrior Bread every few weeks.  It has no yeast and contains almond flour and dried sweet potato.  Very tasty too.  A good book to help in this regard is No Grain, No Pain by Peter Osborne.  Thankfully, I can eat coconut and nuts and use those flours in baking and also use nut milks in cooking.  Since I am allergic to chocolate and vanilla, lemon is my go to flavor for something sweet.  My migraines totally disappeared once I went gluten and casein free.  I can occasionally eat certain high fat cheeses that are low in casein, as well as grass fed butter.  I use lots of Organic Olive and Avocado oil. The problems I thought I had with nightshades went away when I went fully organic.  And, the rest of my issues went away by avoiding the foods I tested positive to as well as avoiding all grains. I will be the first one to say that it is a very expensive way of eating, but thankfully we can afford to eat that way.  The good news is that I take no prescription meds at age 72.  At 54 before diagnosis, I was a mess and on a boatload of pharmaceuticals.  
    • lmemsm
      Finding gluten free ingredients

      By lmemsm · Posted

      With that many foods removed from your diet, what do you eat?  I also have histamine issues and migraines so that takes out certain trigger foods and high histamine vegetables.  Have allergies to coconut and issues with nuts so those are out.  I'm beginning to think I may have to remove dairy and some of the grains beyond wheat to get allergies under control.  Just having so many issues figuring out what to make at meal times.  What's a typical breakfast look like for you?  Thanks.
    • knitty kitty
      Burning sensation when I wake up

      By knitty kitty · Posted

      @Healthforme, No prescription needed for thiamine hydrochloride, Benfotiamine, and TTFD (Tetrahydrofurfuryl Disulfide).  They are available over the counter.   Thiamine Mononitrate is not recommended because the body doesn't absorb or utilize it well.  
×
×
  • Create New...