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Dh Relief


jobys tutu

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jobys tutu Newbie

I was diagnosed with DH a a few years ago and, with the exception unintentional ingestion, maintain a gluten free diet. The main culprit for recent DH flare-ups seem to be various dietary supplements I've been trying to combat fatigue and a very slow metabolism. Since I'm not on Dapsone on a regular basis anymore, I was searching for any type of relief during a recent outbreak and found that a really cold ice pack helped me weather the outbreak. I had to leave the ice pack on for a few hours, but it's so worth it. I hope this helps someone else.

  • 3 weeks later...

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Lisa16 Collaborator

I have found two rather unexpected things help me. I discovered them because my outbreaks were misdiagnosed as shingles (three times!) so I treated them like shingles.

The first thing was "abreva" in the little OTC tubes. It is a product for cold sores. It is a little expensive, but for some reason it worked for me. It appears to make the blister shrink. It also seems to help with the itch/pain. Of course, using it depends on where the outbreak is (I think it would not be so good for fingers, say). It seems to be similar to dapsome in effect-- maybe a related compound? I have never tried the spray. Kind of bizarre.

The second thing is carmex in the little pots with the yellow lid. It is formulated for cold sores, but again, for some odd reason, it really seems to make me more comfortable. It is a little stickier, so you could put it on fingers or toes and then put a bandaid or something to keep it in place.

For what it's worth.... hope this helps somebody. I now keep these thing on hand, just in case.

Lisa

  • 2 months later...
linuxprincess Rookie

I have found that tea tree oil helps quite a bit with me. Discovered this inadvertently when we bought some tea tree oil bath soak and it really helped. I can normally barely sit in a tub of hot water with out it making me itch, but the tea tree seems to help. My sister uses straight tea bags on her areas. She makes a cup or a pot, whatever and uses the left over wet leaves for her rash areas. She saw improvement.

Cold packs help me tremendously also. The carmex / abreva connection sounds like it might be worth checking out as they are intended to treat blisters and I could see the possible help from them.

  • 1 month later...
ljmaine Newbie
I was diagnosed with DH a a few years ago and, with the exception unintentional ingestion, maintain a gluten free diet. The main culprit for recent DH flare-ups seem to be various dietary supplements I've been trying to combat fatigue and a very slow metabolism. Since I'm not on Dapsone on a regular basis anymore, I was searching for any type of relief during a recent outbreak and found that a really cold ice pack helped me weather the outbreak. I had to leave the ice pack on for a few hours, but it's so worth it. I hope this helps someone else.

I am new to this dont know if i will get right but i have outbreaks on my right foot and both hands it takes a long time to heal. Accidentily found that purell hand sanitizer works really well to stop the itch and seems to make the healing faster.

purple Community Regular

I read many pages on here just yesterday and made a bunch of notes. All the tips given above are new to what I read, so try them too. Here is a list.

No Dapsone, its not worth it, bad side effects

Stay away from iodine, table salt, sea food, salmon

No NSAIDS

Possibly eliminate dairy

take potassium

cortisone cream may help

>>>moistened black tea bags helped many people<<<

avoid Applebees and Arby's

bathe in bath salts (without iodine)

cold shower or cool bath helps

Calamine lotion helps

ice packs help

don't eat too much fruit

check your hair care products

stay away from salty chips

dairy can have high levels of iodine so use organic products

there is iodine in thyroid meds

iodine and gluten can flare it up

Hope some of this helps you.

I would try the tea bags and ice packs and those previous tips too. I would suggest rinsing your canned veggies like beans to remove the salt.

  • 1 month later...
rmducote Apprentice
I read many pages on here just yesterday and made a bunch of notes. All the tips given above are new to what I read, so try them too. Here is a list.

No Dapsone, its not worth it, bad side effects

Stay away from iodine, table salt, sea food, salmon

No NSAIDS

Possibly eliminate dairy

take potassium

cortisone cream may help

>>>moistened black tea bags helped many people<<<

avoid Applebees and Arby's

bathe in bath salts (without iodine)

cold shower or cool bath helps

Calamine lotion helps

ice packs help

don't eat too much fruit

check your hair care products

stay away from salty chips

dairy can have high levels of iodine so use organic products

there is iodine in thyroid meds

iodine and gluten can flare it up

Hope some of this helps you.

I would try the tea bags and ice packs and those previous tips too. I would suggest rinsing your canned veggies like beans to remove the salt.

How does salt effect? my hubby has to eat gluten free but loves salty corn chips. does this make breakouts worse?
jitters Apprentice

My DH is always worse in the mornings. I usually get up and hold a cold pop can for awhile. It helps a lot and by the time its warmed up a little it doesn't itch any more. I use ice packs as well, but when I'm in a hurry and just want to grab something to help a cold can works wonders for me! :)


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  • 3 weeks later...
Mims Newbie

I was diagnosed June 1...so I am really new to Celiac, ...but definitely not new to the rash.

Having fought this rash, on back, neck, arms, wrists, hand, legs, and knees I can tell you that lots of things make it worse. I have had it so bad on my neck and head that I could not even brush my hair. Some mornings, just turning my head would have blood running down my neck and back. For years I did not own a shirt that was not covered in bloodly stains. Once the flare began, it could be days (weeks, months, years) before it would calm down. Immediately following my diagnosis and I began my gluten-free diet, there was an immense improvement.

Since then I have found that Advil and Tylenol will cause a flare up in a matter of hours. Being glutened will also cause a quick and nasty flare-up.

But a few years ago a doctor had given me a sample of OLUX. It is a foam which is great because a little goes a long way....Stings like crazy, especially on recently scratched lesions. But within moments, the itch stops - completely!!!! Ending the itch torment would be good enough for me, but it actually heals the lesions. It dries them up, stops the oozing, and helps with the size of the actual lesions. It doesn't happen over night, but it does heal them and in the meantime it does control the maddening oozing and itch. It is greaseless and odorless so you don't stain your clothing. There are two formulas - one can is purple the other green. By mistake the doctor wrote the script for the green formula, but it did not work for my rash. Go with the purple. Everyone out there should ask their doctors for a prescription for this stuff. It is primarily used to treat "contact dermatitis" and other "allergy rashes" but as they say - Couldn't hurt to give it a try....you never know... As far as I know there are no serious side effects or anything and it just might help someone out there.

Remember that Viagra was initially used to treat a specific heart condition....and we all know where that went!

I also figured out on my own that iodine was a major cause of reflux.... Quite by accident, I found that once I switched to iodine free salt, and sea salt (in everything-even packaged foods- check the label use only products that say sea salt in the ingredient list) there was a great improvement in the reflux and the rash!

I am also Lactose Intolerant....three weeks ago I discovered Digestive Advantage...a once a day pill to prevent dairy symptoms (nasty bellyache, gas, bathroom trips etc.)... Well this stuff is a "Magic Potion"...Oh, to be normal again (as normal as one can get while being Celiac)... I don't know the connection, but the rash has calmed down considerably too. I have been glutened twice since the first of the month (cc issues), but the rash flares were just not as nasty as usual...so I am thinking there might be a connection to the dairy issues too.

Yet it still does not really ever go away.............

I have not heard of the connection with thyroid medication until I read it tonight - and wonder if there is any information around on that school of thought...

Talking to my doctor regarding that issue should be exhausting at best....she said I couldn't be Celiac because I was too tall... I insisted on testing, and wow, I guess I am not too tall after all............

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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