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

Uncontrollable Itching


bigapplekathleen

Recommended Posts

bigapplekathleen Contributor

Hi everyone,

I have been gluten-free now since Sept 1st of 2003. I have only had a couple epsidoes of accidental gluten ingestion, and none of them have been recent. However, for the past couple weeks, I have had INTENSE itching all over my body - especially my back, buttocks, scalp, neck, chin, neck. I have never experienced anything like this in my life. It actually keeps me awake at night & wakes me from a deep sleep. I also have red spots all over my body. The spots sort of look like acne, but I know they are not acne. I have some acne or spots on my face and I have white sores in my mouth (inside of my cheek in 2 spots). I also have itchy patches and red spots on my scalp. I have several very prominent red bumps on my neck. They actually look like HIVES.

I feel like this could be related to gluten, but not sure if it's something I am eating or something i am putting on my skin. I have not been diagnosed with DH, but suspect that i may actually have it. My case of celiac disease was quite severe with multiple health problems for many years before diagnosis. I am waiting to see Dr Green at the Celiac Center in NY City, but I can't get in there until April unless someone cancels an appt before then. I have seen a nutritionist there, though, who has been EXTREMELY helpful.

My question is this: Does anyone haave experience with this after going gluten-free? Could it be environmental (soap, shampoo, hair dye, laundry detergent, dry cleaning chemicals, etc)? I changed my hair color on Dec. 24 at a salon and had never been to that particular salon before. It didn't occur to me to think about the hair dye. Are there laundry detergents that are better than others for people with DH or celiac disease? I think I want to err on the side of caution now and go completely gluten-free in everything that touches my body...just until i can get this itching and redness to subside. I also recently bought a new brand of laundry detergent, not even thinking that would have an effect on my body. I just cannot seem to figure out what is causing this !

Help !!!!!!

Kathleen


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



Celiac.com Sponsor (A8-M):



JsBaby-G Newbie

Kathleen,

I sure sounds like DH to me. You know something, get an appointment with a dermatalogist before your appt with the dr in NYC. You can't go until April like this. However until then, what laundry detergent do you use? I'm from Canada and I use Sunlight, it's very mild. Watch the shampoo and conditioner you used as you have some bumps in your scalp, go to a health food store and get a mild all natural one. I would skip makeup if you wear it. I would also look at a health food store or drug store for a lotion that's very mild with no scent. Ask the pharmacist for something that treats eczema or psoriasis. As for the sores in your mouth, I get them when I use a toothpaste that have gluten in it. Use Tom's of Maine toothpaste. Since I don't have DH but have had some skin problems read about DH on this site. They provide alot of info. Lastly, get some Epsom salt, put them in a warm bath and try to relax. Oh yeah I recommend not dying your hair, as you could have some open sores and could be infected by the dye.

Hope you feel better.

bigapplekathleen Contributor

Hi Crystal,

Thanks for your reply. You know, after posting my comments last night, i went to a couple of celiac websites and looked at various pictures of DH. Some of them look a lot like what I have right now. I have been treated for excema in the past and my eldest sister has SEVERE psoriasis (had chemotherapy twice to treat it - experimental - and was hospitalized a couple times).

I use epsom salt baths a lot. It was the only thing that helped my excema.

Laundry detergent - I bought TIDE FREE last week when we ran out of ALL FREE AND CLEAR. That's when the itching started. So I switched immediately to an organic brand.

Toothpaste - I use colgate or crest. Both are supposedly gluten-free in the US.

Shampoo - I tend to use head and shoulders, because it helps with the itching. however, since I had my hair colored, I have been using L'Oreal Color Vive shampoo for color-treated hair. I have not seen any ingredients on the label that look 'suspect'

All my skin makeup is gluten-free.

My hand lotion is gluten-free.

The places I am getting the red spots are places I don't use makeup or lotion, except for the small spots on my face.

I think you're right about the dermatologist, though. I think I should try to get an appt soon. It's been a year since I have seen my dermatologist. The strange thing is that none of my dermatologists have ever said anything about the possibility of DH, but then again, none of my doctors said anything about the possiblity of celiac disease until 6 months ago!

JsBaby-G Newbie

Kathleen,

It seems like your doing everything right. I've been to the dermatologist about this discoloration on my back, it's not itchy or anything. He took a biopsy of it and it said nothing. He is totally baffled, he even invitited me to go to convention of dermatologists so his collegues could take a look. I said "no thanks" I'm tired of being a specimen. I hope you find what's ailing you.

Let me know

:D

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.