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

Pictures Of My Rash

Sam81

By Sam81
in Dermatitis Herpetiformis

Recommended Posts

glutengirl42 Rookie
glutengirl42
Posted

Thanks for your response ravenwoodglass. I'm actually going to start the specific carbohydrate diet very soon. I'm mentally/emotionally trying to prepare myself and also get my house ready in terms of supplies. I've used rice dream before.. good to know.. I was unaware. What ingredient makes it no good?

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

Celiac.com Sponsor (A8-M):


  • Replies 60
  • Created
  • Last Reply
ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for your response ravenwoodglass. I'm actually going to start the specific carbohydrate diet very soon. I'm mentally/emotionally trying to prepare myself and also get my house ready in terms of supplies. I've used rice dream before.. good to know.. I was unaware. What ingredient makes it no good?

It is processed using barley but there is no reg that it has to be on the label so they removed that info a long time ago.

Skylark Collaborator
Skylark
Posted

As expected - damn useless. Told it's IBS and it's common - i am to go on a "low residue" diet. The rash is nothing to do with it, I can't cure the abdominal pain, bloating and nausea as well as curing the bowel issues - only one of these can be sorted and I am to remove fibre from my diet but then take fibogel to help. For a stomach guy he was very concerned with the bowel, refused to do an endoscopy will see me again in 4 months to change fibogel for something else if it doesn't work. Celiac (coeliac as it's called here) is all in my head.

I'm devastated and feel lost and very down....:( Did I mention I feel like a head case??

You are NOT a head case. I really hope the diet helps you.

glutengirl42 Rookie
glutengirl42
Posted

It is processed using barley but there is no reg that it has to be on the label so they removed that info a long time ago.

WoW... it's so frustrating that the label laws don't require full disclosure of ingredients. Very good to know. Continue to keep me informed :)

Sam81 Apprentice
Sam81
Posted
  • Author

And you aren't a head case.

Just to say the results of biopsy apparently showed nothing more than a scratch on the skin, except the letter I read (upside down) said more testing may be beneficial. They're now looking at Lupus regarding the rash in pics 2&4 - the ones that look like hives. Apparently Hives urticaria don't last more than 24 hours... Not what I've read. Also, they have done a RAST test for allergy to wheat... All because I stamped my feet. They now think I'm mental...

pricklypear1971 Community Regular
pricklypear1971
Posted

Just to say the results of biopsy apparently showed nothing more than a scratch on the skin, except the letter I read (upside down) said more testing may be beneficial. They're now looking at Lupus regarding the rash in pics 2&4 - the ones that look like hives. Apparently Hives urticaria don't last more than 24 hours... Not what I've read. Also, they have done a RAST test for allergy to

wheat... All because I stamped my feet. They now think I'm mental...

I know this is incredibly frustrating.

Good news is they are looking at Lupus, which is on the autoimmune spectrum. Any chance they are sending you to a rheumatologist? Good chance a Rheumy will listen to you about Celiac and order the tests.

And that doc must be on the pipe because chronic hives can do all sorts of things, including staying around for more than 24 hours.... Open Original Shared Link

This is a side note - I used to be obsessed with classifying my rash and upset because my dermatologist wouldn't give it a name - he said it was "caused by an autoimmune response" - which quite frankly was the BEST thing he could have said because I started looking for the autoimmune condition.

I obsessed over it being dermatitis, hives, psoriasis....he said it didn't matter because the goal was to relieve the

symptoms and NOTHING HE DID RELIEVED THE SYMPTOMS (furthermore Tge treatments were harming my adrenals). So, I had to find the cause. Perhaps having them look into Lupus is the first step to finding the cause for you.

Good luck and keep on going.

lub2bmom Apprentice
lub2bmom
Posted

have you tried going gluten free to see if it helps?

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

Celiac.com Sponsor (A8-M):


Sam81 Apprentice
Sam81
Posted
  • Author

have you tried going gluten free to see if it helps?

Everytime I plan and attempt it I get a glimmer of hope that dr's may test for it so I don't start it! I haven't a clue were to buy stuff in UK so it's taking a lot of time planning - I don't want to be eating salad forever. I'm also vegetarian so that's adds complications in terms of protein or lack of it as all vege stuff is loaded with gluten and wheat. I'm being referred to an immunologist for akllergy to wheat. I'm going to ask for a rhematologist - even if i play on the behcets angle... ...been a while since they checked me out anyway...

I just feel like bechets and lupos are not real - you can only manage them - not cure them... Does that make sense to anyone?

I certainly dont mean to offend anyone by that statement - My family can't accept them. They laughed when I told them.

Natally Newbie
Natally
Posted

I would say that you are like many of us who suffer from DH--you simply CANNOT tolerate iodine. Now that you've seen the result of iodine ingestion, you'll need to try everything you can to eliminate any and all iodine in your diet. This may be why the blisters have not disappeared after six weeks of being gluten free. Don't eat seafood, iodized salt, salty foods, processed foods, or dairy (unless it's organic). For me, NO healing began without eliminating iodine...and then the healing was fast.

By the way, others on this forum have mentioned that Dapsone did not resolve their DH.

Thank you for the information about iodine. I am new to this site and suspect I have a problem with gluten and I also suspect with dairy and yeast as well. So much information I need to give myself some time to take it all in.

  • 1 year later...
Mefellows Newbie
Mefellows
Posted

Quick background to this is I was diagnosed with bechets at 16 at put on dapsone tablets - 50-100mg daily. Left to manage it on my own. I stopped taking it 2 years ago when I was pregnant and havent taken it since due to breastfeeding. Slowly symptoms of my body/stomach not liking something have come along and I also get this rash when I eat certain things. Im tired, irritable, constant stomach aches/pain, migraines, urgency for toilet and messy when I go, dizziness and bad memory. Dr's so far have put most of these symptoms down to stress and having children. But I feel different, my head is always foggy and I hate this anger that comes from no where. Rash has been treated over the years as Psoriasis, impetigo and one dr said it was because i must of left mess on me when I'd been to the toilet! Dr has done "celiac Blood test" which he says is negative but refuses to give me the actual result. From what I can tell he has only tested the "Anti-tissue Transglutonase" level? So here are some pictures of the rash I get on my face (purple marks that can be itchy but usually painfull and take months to go), bottom - (intensely itchy and burning - note the scratch marks!) and legs - these look more like hives I think. I havent included all the pictures of the rash on my beind as it's very embarassing - just imagine the last 2 pictures all over!! Everything else seems mild at the moment.

Any opinions, thoughts etc are welcome. Ive just had a colonoscopy (as Dr wants to do the cheapest procedure first) and it was clear. I have a dermatology app in 3 weeks and am seeing stomach people for first time in October.

002a.webp005c.webp

001a.webp005e.webp005d.webp

005a.webp005b.webp

OMG! I get this. I thought it was just weird hives...just as itchy as hives. Is iodine (besides gluten) the answer?
ciamarie Rookie
ciamarie
Posted

OMG! I get this. I thought it was just weird hives...just as itchy as hives. Is iodine (besides gluten) the answer?

For some of us, yes. I also had to cut out MSG and all the msg 'alias' ingredients I didn't know about, as well as sulfites. Some folks on here had to go with low salicylates, so we're all a bit different. If or when you go low iodine, don't cut it out for more than maybe a couple of months? I'm not an expert... but it is a necessary mineral. As we heal, our body can process it better too.

I'd start with the gluten-free and possibly low iodine, then keep a food diary to see what sorts of other things may cause an issue for you. Then you can come back here with questions or for some research. Hope you stop itching soon!

Edited to add: If you want a diagnosis, don't start a gluten-free diet until you get a DH biopsy done or blood tests done or whatever testing your doctor agrees to do. Sorry, I should have put that up front.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • 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    
×
×
  • 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.