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

Itching...


jpsych

Recommended Posts

jpsych Newbie

Hello all!

I have recently been diagnosed as having celiac. I have been itching daily but I do not have a rash. Anyone had similar troubles? My doctor suggested taking Benedryl to take the edge off.

Thanks, and y'all have been so helpful already.


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



Celiac.com Sponsor (A8-M):



aaascr Apprentice

Malnutrition and/or dehydration can cause the itchiness.

Possibly, sensitivity to the sun as well.

Prior to my dx I couldn't scratch enough!

Once I started absorbing the good stuff again -

it subsided. Now the only itch I have is from my allergens.

rache Apprentice

im having the same problem!!! no rash, but im itchy everywhere, even on my scalp. i was diagnosed with celiac disease in April... ive tried creams but nothing is helping!!

lindseylue Newbie
Hello all!

I have recently been diagnosed as having celiac. I have been itching daily but I do not have a rash. Anyone had similar troubles? My doctor suggested taking Benedryl to take the edge off.

Thanks, and y'all have been so helpful already.

<{POST_SNAPBACK}>

Sounds like you might have dermatitis herpetiformis—that's what I have. Lots of celiacs get DH. It's a really really itchy rash with bumps and blisters too. A dermatologist can do a biopsy to check for sure. A gluten-free diet will really really help.

Claire Collaborator
Hello all!

I have recently been diagnosed as having celiac. I have been itching daily but I do not have a rash. Anyone had similar troubles? My doctor suggested taking Benedryl to take the edge off.

Thanks, and y'all have been so helpful already.

<{POST_SNAPBACK}>

My 'history' began with dermatographism - a rare skin disorder that causes deep welt like ridges in the skin and the skin retains marks for hours. It also itches and sometimes turns very red. Details of this are unimportant for this post except to lead into a response to your question. When this weird stuff went away I began a 10 year long nightmare of itching - no rash.This was accompanied by severe cold chills. I had allergy tests and was told I was the least allergic person they had tested. No answers anywhere.

The answer was found 10 years later when I was diagnosed Type II, Delayed Food Reactions - primarily all grains except rice and oats. Unfortunately the test did not specify gluten - just grains. Within the week that I stopped eating bread and flour saturated products - the itching and the chills stopped. I still have mini episodes but nothing at all like the 'seige'.

Skip the Benedryl if you can. Get rid of the gluten. Ask your doctor for a prescription for Axid - this ulcer medication has a side benefit of mitigating the itching of psoriasis and any other itching.

Topical application of Solarcane does wonders. Claire

If gluten-free doesn't take that symptom away - look for other reactive foods in your diet. Claire

JoeB Apprentice

I had an itching problem from head to toe for about 18 months before being diagnosed with celiac disease. The dermatologist told me I had hyper-sensitive skin. He told me to use Benedryl, too and he gave me a couple of cortisone shots along the way. I stopped taking the Benedryl after a short while when I found that using plain aloe all over relieved the itch for about 12 hours.

After going gluten-free for about a month, I found the itch started to go away. I'm six months gluten-free at this point and I'd say the itch is about 95% gone, so hang in there. I hope the gluten-free diet helps.

Joe

swittenauer Enthusiast

Here is another symptom that I didn't realize was associated with celiac. It seems as though my husband is one of those "lucky" people who gets all the symptoms. He is itchy a lot. We try different lotions & such but to no avail. Hopefully when we hit the 6 month mark gluten free that some of these symptoms will subside.


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Sometimes I get itchy from head to toe, and scratch so much that I have red welts all over! But I think it is starting to get a little better. And of course, I have a long way to go before I'll be at the six month mark for my gluten-free diet. So, I am hoping it will go away eventually.

Vickidan Newbie

I too have the itching, but it didn't occur to me that it was from the celiac. I do get relief from vitamin b complex, but if I take it too often, I get sores in my mouth.

Claire Collaborator

A couple of suggestions for the 'itching ones'.

Anithistimines work but a steady of diet of these is not healthy and tends to make some people loopy.

There is a medication for ulcers called Axid (150mg). It was accidently discovered that this helped the itching of psoriasis. One pill is usually enough to calm down the itching - takes an hour or so.

When I was having constant itching - especially at night - I relied heavily on Solarcane. That's right - the sunburn stuff. It deadens the sensation in the nerves close to the skin surface. It works for hours.

I still have mini episodes but nothing like the ten year siege that ended when I stopped eating bread and other flour saturated foods. Gluten is not the only thing that causes me to itch though it is the principal offender. Claire

Claire Collaborator
I too have the itching, but it didn't occur to me that it was from the celiac.  I do get relief from vitamin b complex, but if I take it too often, I get sores in my mouth.

<{POST_SNAPBACK}>

Are you sure B comples is causing the mouth sores? I ask because the mouth sores are common for people with celiac. Claire

elisabet Contributor
My 'history' began with dermatographism - a rare skin disorder that causes deep welt like ridges in the skin and the skin retains marks for hours. It also itches and sometimes turns very red. Details of this are unimportant for this post except to lead into a response to your question. When this weird stuff went away I began a 10 year long nightmare of itching - no rash.This was accompanied by severe cold chills. I had allergy tests and was told I was the least allergic person they had tested.  No answers anywhere. 

The answer was found 10 years later when I was diagnosed Type II, Delayed Food Reactions - primarily all grains except rice and oats. Unfortunately the test did not specify gluten - just grains. Within the week that I stopped eating bread and flour saturated products - the itching and the chills stopped.  I still have mini episodes but nothing at all like the 'seige'.

Skip the Benedryl if you can.  Get rid of the gluten. Ask your doctor for a prescription for Axid - this ulcer medication has a side benefit of mitigating the itching of psoriasis and any other itching.

Topical application of Solarcane does wonders. Claire

If gluten-free doesn't take that symptom away - look for other reactive foods in your diet. Claire

<{POST_SNAPBACK}>

hi Claire,

Do you tolerate oat?I want to try it for my son.How often do you eat oat?

thanks

Ursa Major Collaborator

Elisabet, unless you're in Europe, oats are out. Here in North America they're all contaminated by gluten containing grains (processed in the same mill, I guess).

aikiducky Apprentice

And oats aren't safe in most of Europe, either. In Finland and Sweden you can get oats that are grown on dedicated fields, but that's only two countries I know of. Maybe rest of Scandinavia , too?

Pauliina

Claire Collaborator
hi Claire,

Do you tolerate oat?I want to try it for my son.How often do you eat oat?

            thanks

<{POST_SNAPBACK}>

As a safety measure, I do not eat oats. There is a high risk of contamination. Claire

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):
  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.