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

Dermatitis / Celiac Sprue

chrissygirl0668

Recommended Posts

chrissygirl0668 Rookie
chrissygirl0668
Posted

Hi all, need help, advice and guidance to the herm/dermitit/celiac sprue. Apparently, I was born with it; however, I am almost 42yrs old and it just surfaced within last two years. Took a bad fall and wound up having two back surgeries. Didn't appear after the first surgery, second surgery (lower lumbar fusion... with metal and screws in my lower back) in oct. by Dec. I had all these blistery things all over the back of my forearms. Went to a dermatologist, he said it was dermititis. Gave me a prescription, with refills, for a lotion cream (2 yrs ago). After I finished using the lotion cream, (this Thanksgiving) all of a sudden I started getting these blistery things on my arms again; however, they traveled to my head, face and shoulder bones. I went in Jan. to my sister's dermatologist (thinking omg I am getting older and starting with acne) to be told, after a biopsy what I had; he immediately sent me to a gastro, had the procedure done... and whaaa laaaa. I have celiac sprue disease. Not only Celiac... but... the skin portion of it tooo. So I am new to this as of Ash Wed., of this year... anyway saw a dietician; I am also on dapsone, meds... and hydroxyz hcl 25mgs. I went to trade joes, whole foods, yada yada yada... i hate all the food, moreso the pastas. I eventually found vitacost.com (everything u need half price) however, everything I bought is gluten free; however... again... it all contains soy. I CAN'T HAVE SOY. I thought i was doing the right thing and taking meds, weekly blood drawn and I am still sick...... Someone please help me to see there is a rainbow at the end of the lining...... ALSO WHERE CAN I BUY WHEAT FREE LIPSTICK. OMG MY LIPS.. THANK YOU all for anyone who can help me..... I understand it is going to take at least a year for me to be able to know what I am doing and stop getting so upset.

here's one for you.. went out for easter dinner at a realtives', came home starving...... any help advice would be soooo appreciated......

chrissy

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

Celiac.com Sponsor (A8-M):


itchy Rookie
itchy
Posted

Hi Chrissy,

Welcome to the club. I suspect there is no rainbow ending. You don't have much choice but to stop eating gluten, and most of us have to get rid of even the smallest amounts from our diets and anything that touches our bodies, like shampoos, etc.

There are a lot of different strategies for helping to deal with it, like taking Dapsone, limiting iodine, special creams, etc. but really there isn't any option but to dramatically limit gluten. Harder for some than for others. I haven't found it that difficult, because I already ate a somewhat paleo diet and welcomed the chance to eliminate cakes and pastries etc from my diet.

It's taken me 20 months, with some relapses in there, but I'm now almost free of lesions and the constant stinging, aching, and aching. I suspect that it will all come back with my first serious mistake.

I would have thought that taking Dapsone and eating strictly wheat free would have resulted in improvements quite quickly.

BTW, the best way to deal with eating out is to eat ahead of time and take along a gluten free snack. That way you won't be tempted to take risks because you are hungry. I've concluded that from now on eating out is a social thing that doesn't necessarily involve actually consuming much.

eatmeat4good Enthusiast
eatmeat4good
Posted

I had to limit iodine strictly for 3 months before I got any lesions healing...I had been strictly gluten free for 3 months with no healing but a little less stinging. Once I read about the iodine connection it made all the difference for me. You may be different, but any iodized salt, fish or shellfish, would cause a reaction in the skin sores just like gluten. It was really difficult but well worth it. After 3 full months of limiting iodine and being stricltly gluten free, my sores started healing and now I have just one small one left and it is healing. The iodine limiting is temporary until the antibodies go down. For some reason Iodine causes the IgA antibodies to react.

Like the above poster, I fully expect a full outbreak of lesions that last several weeks if I make the slightest mistake with gluten.

chrissygirl0668 Rookie
chrissygirl0668
Posted
  • Author

thank you for responding and helping me out. the salt was the first thing i eliminated from my household. this is hard and not much fun. like easter was first outing, and I came home starving. went to city yesterday had dinner and explained the severity of my situation and was told my food would be gluten-free and I feel like crap, blisters starting to form and the rest of the side affects. My mom, she's 70yrs old; she thinks I am being a baby and I have to do a new diet regime.. My older sister Kaje has helped me tremendously with this website shopping food, you name it she's there. I just don't feel good and really am mad I have to do this at this point in my life. A friend of my BF has a slight case of Celiac and he went last week to a actupunctuarist and says he feels so much better. I'm not into needles and don't know if I can handle it... However, after reading all other postsss... I see a lot of people are on different medicines, i never even have heard of. soooooooooooo confusing

chrissygirl0668 Rookie
chrissygirl0668
Posted
  • Author

I am trying (my hardest) to do the right thing. Still getting sick\, meds not working, etc. after reading other people's posting, some have it way worse than I do. But you know what, everyone's issues/symptoms are different. I would not wish this one anyone at all. It's very hard and confusing. I am just lost.

cahill Collaborator
cahill
Posted

A friend of my BF has a slight case of Celiac and he went last week to a actupunctuarist and says he feels so much better. I'm not into needles and don't know if I can handle it...

there is no such thing as a "slight " case of celiac. the only treatment for celiac is a 100% gluten free diet.

cahill Collaborator
cahill
Posted

I am trying (my hardest) to do the right thing. Still getting sick\, meds not working, etc. after reading other people's posting, some have it way worse than I do. But you know what, everyone's issues/symptoms are different. I would not wish this one anyone at all. It's very hard and confusing. I am just lost.

Chrissy, take a long deep breath, and know that it will get easier,really it does :)

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

Celiac.com Sponsor (A8-M):


  • 4 weeks later...
kitchenscientist Newbie
kitchenscientist
Posted

chrissygirl-I encourage you to avoid all processed foods until you can get your skin cleared up if you still have broken skin areas. If you can eat eggs, boil up some and keep available. fortunately spring and summer are upcoming and salads and fresh vegies are available. For salad dressing squeeze some fresh lemon juice and season with sea salt if it's not agravating to you. If your skin is still blistering and has the insane itch, make a compress to go over it. I used zinc ointment as the first layer, a thin layer of vaseline for my second layer. If possible wrap or cover the area with plastic and ice it. Ice will calm down the itch and pain. A few supplements you might investigate are Quercetin and Butyeric Acid. There are gluten free lotions, body wash and shampoo products available at a healthfood store. As far as prescriptions go I personally avoid them as much as possible.

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • 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)

  • Upcoming Events

  • Posts

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.