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

Looking for helpful advice/ help...

Beck123

By Beck123
in Dermatitis Herpetiformis

 Share

Recommended Posts

Beck123 Rookie
Beck123
Posted

Hi, I am a diagnosed celiac. I developed dermatitis herpetiformis, which led to my diagnosis about 4 years ago. I went strictly gluten free and my skin remained clear until about a year ago, after the birth of my daughter. After her birth, I have a lingering rash on the back of my neck that just will not go away. I am desperate.  I must be getting gluten from somewhere, but I simply cannot find its source. I never eat out, my family has went gluten free, I only eat foods that I know are gluten free, but for some reason I am still having symptoms of being glutened. I seem to have become more sensitive after the birth of my daughter as to where even the smallest amount of gluten sends my body upside down. Has any one else had this happen before after a pregnancy? Or is there something else that I am missing. I am desperate to find out what I am doing wrong and what I can do to get my body back to healthy again. Any input is appreciated. Thanks. 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

Welcome to the forum, Beck123!

Are you certain the rash on the back of your neck is DH? Could it be something else? Have you had the rash biopsied to confirm it is DH? Could something in your regular "safe" food consumption list have had a formulation change so that it is no longer gluten-free?

Edited by trents
Scott Adams Grand Master
Scott Adams
Posted

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

knitty kitty Grand Master
knitty kitty
Posted

Welcome to the forum, @Beck123!

Longtime DH sufferer here.  I had to remove everything dairy from my diet.  Not only am I lactose intolerant (I can't digest the sugar in milk, lactose), I am sensitive to the protein in milk, casein.  Not only does milk cause continuing inflammation and damage like gluten, dairy is high in iodine.  

I also found it very helpful to take extra Niacinamide, Vitamin B3, in addition to my B Complex supplement.  Niacinamide is the nonflushing form of Niacin.  Niacinamide has been shown to improve DH.  

Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide

https://pubmed.ncbi.nlm.nih.gov/30390734/

I took Niacinamide without the tetracycline and had improvement within two weeks.

Discuss with your doctor the benefits of supplementing with vitamins and minerals while on the gluten free diet which can have nutritional deficiencies.  Post pregnancy, our bodies can be insufficient in nutrients, vitamins and minerals because so much goes to the baby's growth and development. 

Correcting nutritional deficiencies is part of proper follow up care for Celiac people.  

Hope this helps!

Beck123 Rookie
Beck123
Posted
  • Author

@knitty kitty this is so helpful. I was actually eating dairy free before and during my pregnancy and my DH was completely clear. I began to eat dairy again after my baby and my it came back.  I didn’t think of this before, so thank you. Also, are you saying that if you eat dairy that your DH will flare up or is that only when you eat gluten? 
 

I have a doctor’s appointment next month & I will be sure to ask about the vitamins. 
 

Thanks so much. 

3 hours ago, trents said:

Welcome to the forum, Beck123!

Are you certain the rash on the back of your neck is DH? Could it be something else? Have you had the rash biopsied to confirm it is DH? Could something in your regular "safe" food consumption list have had a formulation change so that it is no longer gluten-free?

I never had my rash biopsied, but my doctor said that it was. I’ve been extra careful and I’ve been writing down what I eat everyday to see if it’s something that I’m eating. Thank for your help. 

Beck123 Rookie
Beck123
Posted
  • Author
3 hours ago, Scott Adams said:

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

Thank you! I don’t eat many of the foods you listed, but apparently dairy is night in iodine also. I will try cutting it out and see if it helps. Thanks!

knitty kitty Grand Master
knitty kitty
Posted

@Beck123,

Yes, if I eat dairy even without gluten, I will get DH outbreaks.

This article might be helpful....

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

I also get eczema from dairy.  So I'm a flaky, bumpy, itchy mess if I consume dairy.

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

Celiac.com Sponsor (A8-M):


Rogol72 Community Regular
Rogol72
Posted

I've had DH a long time, diagnosed by skin biopsy. I can attest to everything that's been said about DH and the dairy/iodine connection. In addition to flaring DH, dairy makes me really tired and knocks me out. It's the casein protein, and/or the Microbial Transglutaminase food additive they put into dairy and other foods.

https://pubmed.ncbi.nlm.nih.gov/30543926/

https://www.frontiersin.org/articles/10.3389/fped.2018.00389/

It's worthwhile keeping a food and mood journal. 

Rogol72 Community Regular
Rogol72
Posted

I came across this webinar by the Canadian Celiac Association on DH if anyone is interested ...

https://www.youtube.com/watch?v=PAdmsNiyfOw

pplewis3d Rookie
pplewis3d
Posted
On 8/30/2022 at 4:42 PM, Scott Adams said:

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

 

On 8/30/2022 at 4:42 PM, Scott Adams said:

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

 

..and some brands of eggs have additional iodine in them!!!

 

trents Grand Master
trents
Posted
(edited)
55 minutes ago, pplewis3d said:

 

 

..and some brands of eggs have additional iodine in them!!!

 

How would they do that? Must be "chicken of the sea" hens. You're not talking about powdered eggs are you?

Edited by trents
Beck123 Rookie
Beck123
Posted
  • Author
On 9/1/2022 at 11:46 AM, Rogol72 said:

I've had DH a long time, diagnosed by skin biopsy. I can attest to everything that's been said about DH and the dairy/iodine connection. In addition to flaring DH, dairy makes me really tired and knocks me out. It's the casein protein, and/or the Microbial Transglutaminase food additive they put into dairy and other foods.

https://pubmed.ncbi.nlm.nih.gov/30543926/

https://www.frontiersin.org/articles/10.3389/fped.2018.00389/

It's worthwhile keeping a food and mood journal. 

Today is day 3 of no dairy and the rash is almost clear. So thank you all so much!!!

Rogol72 Community Regular
Rogol72
Posted

Helpful info for reference ...

https://celiac.org/about-the-foundation/featured-news/2015/10/dermatitis-herpetiformis-and-iodine-exposure/

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.