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

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
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.