Has anyone tried mega dosing vitamin C and lysine to treat the celiacs rash?

[Anniehall]

Hi. I'm going to give a little background on this question. So for years and years I had acne. It started when I was 7. I had the HPV virus from 24 years old until this year. After I got pregnant at 23 I started to get constant cold sores on my mouth. At approximately 27 I went to a naturopathic doctor in an attempt to clear hpv 16. She suggested I take megadoses of vitamin C and lysine for three months and then taper down to 3000 after that. When I was taking the megadoses I finally stopped having cold sores constantly. Unfortunately when I tried to go down to 3000 milligrams of vitamin C and lysine like she recommended the cold sores returned. After this point I decided to continue with the megadoses daily. I did this for approximately 6 years. I controlled my acne by applying apple cider vinegar followed by tea tree oil on trouble spots, avoiding lotioning those areas, and practicing proper hygiene daily. Sometime in my late 20s I started to get an itchy rash on my butt and I though I had herpes. I kept going in and getting the rash swab tested for herpes and being told it's just folliculitis. Then at 32 I started to get these little bumps as well. They looked like pimples on my thighs but I couldn't pop them. I had to dig the white part out with a needles for them to go away and the white part wasn't soft like a white head pimple when it came out it was solid. Then I had this bump on my butt not like foliculitis. I went to the er worried it was herpes. The doctor said it was just a bug bite. I was in Texas so there were lots of chiggers which would cause blisters after I'd get bit. I had luck putting hand sanitizer on the bites to stop the itch so I figured okay it's probably a chigger bite. I had this blue colored hand sanitizer instead of the clear one this time though. After I put it on the alleged bug bite I developed tiny extremely itchy blisters all over around my butt Crack but not on my vagina or anus. I went to an std clinic. The nurse said I have herpes. She swabbed the sores and the test came back negative for herpes. I also took a pill to clear gonorrhea and chlamydia just in case I had it because I had cervicitis which gave me a yeast infection on top of everything else. Then I ate only plain yogurt and veggies for a month and the rash went away. I noticed that my skin cleared up as well and I wasn't having the other skin issues either.. When I added gluten back into my diet after the yeast infection from the pills went away the folliculitis and acne returned and I was still panicking about herpes. I went to a dermatologist as well a few days after I had seen the std nurse and the derm thought it could be herpes but was unsure. I got the herpes blood test after enough time that antibodies for herpes would show up. It came back negative for type two positive for type one.Then I started constantly searching rashes and realized that my rash really looked just like the celiacs rash. Then I read about other celiacs symptoms and realized I had almost all the symptoms and had been having the symptoms for quite some time. Then I switched to a gluten free diet which cleared the rash  and all skin issues completely for 7 months. Also eventually found out the cervicitis from way back was from bacterial vaginosis the whole time and that initial std nurse had forgotten to include that test in the std panel when I went in. Then I started to get a rash on my butt again and I found out about gluten cross reactives and started removing those from my diet. So I've been doing a grain free diet since that time and avoiding cross reactives as well. I no longer had to mega dose vitamin C and lysine because the cold sores on my lips stopped. This last year I really pursued clearing hpv because I fell in love and I wanted to be intimate. I started to do elimination diet to see what foods my body reacted to in an attempt to get healthier. I did a combo of a lot of fasting and trying one food waiting three days to see if I reacted and then trying the next food one at a time. I did this for the whole year so I was able to test a lot of foods in that time. I realized that the foods that I tended to react to were foods that are high in arginine and low in lysine. Pretty much plant protein sources. All grains, many seeds, some legumes, coffee, chocolate, rice, quinoa. My body doesn't seem to have issues with tapioca even though it's high arginine. Some fruits like strawberries and peaches give me acne. Onions and garlic were giving me a sore throat for a time and are also high arginine. The main foods I wouldn't react to were cruciferous veggies, meats, and dairy and anything in the carrots family. I could eat cranberries and blueberries, bananas without reaction. Then a little before my birthday I tested peanuts. I was only eating peanuts. On my birthday I smoked pot and maybe went out to eat at golden corral may have had gluten exposure then a bump appeared on my butt. I wasn't taking vitamin C or lysine. I let it go for a day or two to see if it seemed like a cold sore since I could have type one herpes below the waist I thought. I did think it was herpes so I starting mega dosing the vitamin C and lysine and it never turned to a full on blister. Went flat but stayed a light red a for few weeks until fading out completely. Usually I don't smoke pot but when I got the possible herpes rash that I believed was celiacs rash the first time I was smoking pot as well and drinking coffee.  Then recently in February after no pot for several months I smoked pot and I ate chocolate and I had two bumps form on my butt again raised, not red, very itchy. Looked like hives but there were only two.. Megadosed vitamin C and lysine and they were gone in an hour or so. Now this last week I had a CT scan because although I finally cleared hpv when I was able to get my check up this year. I had damaged my liver and gallbladder from the amount of fasting and some long term fasting that I started trying in my attempts to clear hpv. They had me drink a barium drink that was high in iodine to help them see my liver and gallbladder on the scan. My parents were visiting during this time. We ate at a couple restaurants and I was naughty and had a bite of alligator that likely had gluten. I had already been eating many high arginine foods that my skin had previously reacted to but was balancing them out with high lysine foods to see what would happen. I had added back in gluten free grains and was breaking out again the week before the iodine and possible gluten exposure. I even had a couple itchy spots that I thought were maybe foliculitis or herpes and was sticking to megadosing vitamin C and lysine again. After the second restaurant gluten exposure which was from the sweet potato fries that the waitress said were fried in separate oil but had breading underneath them at the bottom of the serving dish. I started having several bumps within the 3 days after. Just kept megadosing vitamin  C and lysine to keep them at bay. Was smoking pot as well still since February. Starting thinking maybe it's the weed. So took a break from pot for most of the 3rd day after exposure and had been avoiding grains and gluten cross reactives since the second restaurant experience. I smoked pot in the evening though and right after I had a bump appear next to my belly button. It disappeared after vitamin C and lysine megadose. Then kept having spots appear that night taking more vitamin C and lysine and taking antivirals each time having each spot disappear quickly. So I thought about each time I had gotten the bumps that could be herpes and what they had in common. Each time there was marijuana and or high arginine foods and or gluten exposure. Today was the fifth day since the last exposure and my skin was mostly cleared. Someone gave me 3 buffalo wild wings and I Google if it was gluten free. One source said it was but when I went to the official website after eating the wings it said may contain gluten. Within a couple hours a had a bump on my butt and itchiness in various spots on back of my thighs and butt. The difference today is that I ate only high lysine foods. Even the chicken is high in lysine. It probably was fried in oil though and gluten contaminated that way. So I'm still leaning towards this rash I get likely being the celiacs rash. I took a ton of vitamin C and lysine the bump is already going down. I thought back to one time I had blisters all over likely from poison ivy but still I had them swabbed for herpes. I thought they were herpes because they responded to the lysine and vitamin C but the swab came back negative for herpes. So I was Googling about vitamin c and it turns out vitamin C can help with allergic reactions and act as a antihistamine. If anyone notices the celiacs rash being triggered by foods with high amounts of arginine and low amounts of lysine I'm interested to know. I'm also interested to know if anyone has tried vitamin C and lysine to clear their celiacs rash and had success. If you do try megadosing these vitamins make sure you take them with a protein. I take them with a good amount of milk otherwise the body has trouble absorbing them and you end up with diarrhea. I also want to mention that I have had an allergy test that said I'm allergic to almonds rice and corn. I noticed skin breaking out from rice and almonds but I never have problems with corn in any way. No reactions. It's the only grain I'm certain I don't react to. I know allergy tests can have false positives. Any opinions on whether or not I should avoid corn?

[Wheatwacked]

So Celiac Disease is literally a pain in your butt 😊. Dr Pauling recommended 2000 mg a day of vitamin C but like vitamin D the RDA and RDA upper limits are too low, in my opinion.

Here are several conflicting statements in the same article from NIH. Vitamin C Fact Sheet for Health Professionals

 "Initial symptoms can include fatigue (probably the result of impaired carnitine biosynthesis), malaise, and inflammation of the gums [4,11]. As vitamin C deficiency progresses, collagen synthesis becomes impaired and connective tissues become weakened, causing petechiae, ecchymoses, purpura, joint pain, poor wound healing, hyperkeratosis, and corkscrew hairs [1,2,4,6-8]. Additional signs of scurvy include depression as well as swollen, bleeding gums and loosening or loss of teeth due to tissue and capillary fragility [6,8,9]. Iron deficiency anemia can also occur due to increased bleeding and decreased nonheme iron absorption secondary to low vitamin C intake [6,11]. In children, bone disease can be present [6]. Left untreated, scurvy is fatal [6,9]".

. " Oral vitamin C produces tissue and plasma concentrations that the body tightly controls. 

People with malabsorption and certain chronic diseases..Some medical conditions can reduce the absorption of vitamin C and/or increase the amount needed by the body." Plasma vitamin C does not correlate to cellular vitamin C, yet it is used to determine sufficiency. 

1)Relatively low levels of vitamin C (micromolar concentrations) are found in extracellular fluids, such as plasma, red blood cells, and saliva.  2)Vitamin C status is typically assessed by measuring plasma vitamin C levels.

Quote

Pellagra may also result from existing medical conditions that result in amino acid or Niacin deficiency. Some examples would be anorexia nervosa, chronic alcohol abuse, Crohn’s disease, carcinoid syndrome, other B vitamin deficiencies, and medications such as isoniazid (used in the treatment of tuberculosis). Pellagra may also arise in patients with Hartnup disease, a genetic disorder where neutral amino acids such as Tryptophan are unable to be absorbed from the GI tract. https://www.aocd.org/page/Pellagra

 

[Anniehall]

I just researched a bunch the last couple days and did a couple experiments. I've been praying asking God to help me figure out why I get the rash.  Ive done elimination diet experiments for the last year and a half. Eating one food only, then fasting 3 days after to see if I react and then trying another food. Once I figure I could tolerate a certain food without reaction I'd leave that food in my diet as I test another food. Part of the rash is from stone fruit or fruits in the rose family. Some of them give me acne or boils. Others cause bumps in my mouth.  Even though marijuana is not a fruit it's a stone fruit cross reactive, meaning if I have reaction to the strings of protein in stone fruit my body can have an immune response to marijuana as well because it has very similar strings of protein. I tested marijuana again today and, sure enough soon as I smoked hives started to form on my thighs and butt. I sat naked on my bed just watching the rash form as I smoked. After that I've been megadosing vitamin C and lysine with milk every hour for the last 3 hours watching the rash fade a little more each time. I also react to gluten and many gluten cross reactives but not all. Peanuts are legumes and I'd be willing to take a guess that I shouldn't eat legumes really either because legumes are likely peanut cross reactives and I know I rash up from peanuts. I rash from various other nuts and seeds also. Almonds are a major one. I'm sure I tolerate certain foods in each of these food families as well but I'm not too eager to test them singularly anymore. Onions and garlic and the nightshade family are other suspected sensitivites for me but not as severe, just acne inducing.  Both herpes and the celiacs rash have tons of the same triggers. This is because plant protein sources are high in the amino acid arginine, a building block of complete protein that feeds viruses if there is not enough lysine amino acid in the diet to counter that effect. With celiacs disease and immune reactions to things it's always certain strings of proteins a person is reacting to. The celiacs rash appears with more than one type of appearance because even after people take out gluten they still react to other foods that are cross reactives or foods they started reacting to because gluten damaged their ability to tolerate certain other foods as well. That's why people get the rash for months after going gluten free. It's not just the gluten. There's a few high arginine foods I can eat that don't cause the rash. It's because they're not cross reactives to my other sensitivities. Tapioca for example, a root vegetable not even close to the same food family as grains, causes me no rash or acne. I took 3 and a half times the amount of anti viral I was supposed to the day the rash showed up again suddenly and was popping up persistently as I smoked  last week out of fear it could be herpes. A bump would show up and I'd pop an acyclovir and megadose vitamin C and lysine. If it was really herpes I wouldnt have any signs of a rash at all after only a third of what I took. I know this because before I cut gluten out I would get constant cold sores and if I popped just one acyclovir upon onset of tingling or slight swelling the cold sore would not even form a blister at all and my skin would return to normal.  It's also highly unlikely that I ever had herpes below the waste because Ive had the rash swab tested several times and it never comes back positive. I get sometimes there's false negatives but it's unlikely the test would be inaccurate 5 different times.

[shadycharacter]

47 minutes ago, Anniehall said:

I tested marijuana again today and, sure enough soon as I smoked hives started to form

There might be gluten in the glue on some cigarette papers. I have no personal experience, but googled and found an old topic on this site.  Glue is sometimes made by boiling wheat flour and water. 

 

[Wheatwacked]

3 hours ago, shadycharacter said:

Glue is sometimes made by boiling wheat flour and water. 

Ever made paper mache? Or pancakes? Add some sugar, baking powder and milk to the paper mache slurry and leave out the newspaper and you've got pancakes.

Don't overthink it. DH I understand is very slow to resolve. From your description you are deficient in many different vitamins. Take something like Geritol Multivitamin and an additional large amount of vitamin D, B1 and choline. A healthy life guard in August measures 80 ng/ml. My son, a professional life guard, diagnosed by biopsy right after weaning, now 46 years old was less than 29 ng/ml last August. Get plenty of potassium in your food. 100% DV in the US is 4700 mg. Get your vitamin D plasma tested. Eat grass fed milk and meat to bring your omega 6 to omega 3 ratio back to 2 to 1. In some western diets the ratio is as high as 11 to 1. Don't eat anything that exacerbates your symptoms and as you fulfill your essential vitamin and minerals you will notice healing.

 

[knitty kitty]

@Anniehall and all,

I treat my outbreaks of DH with Niacinamide.  

Niacinamide is a form of Niacin (Vitamin B3).  Niacinamide clears the deposits of antibodies that cause the blisters.  

Milk is a good source of Niacin, by the way.  Our bodies can convert Niacin to Niacinamide.  

Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide

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

 

[Anniehall]

6 hours ago, knitty kitty said:

@Anniehall and all,

I treat my outbreaks of DH with Niacinamide.  

Niacinamide is a form of Niacin (Vitamin B3).  Niacinamide clears the deposits of antibodies that cause the blisters.  

Milk is a good source of Niacin, by the way.  Our bodies can convert Niacin to Niacinamide.  

Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide

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

 

Thanks for the niacin suggestion. I'm going to try that. Tea tree oil seems to make the lesions worse whether it's a cold sore on my lip or a rash on my butt. Thanks for the info on glue in rolling papers. I smoke out of a bong though so I know it wasn't the papers in these instances. I guess I should maybe stop trying to treat the condition and let it get bad so I can get it swabbed and scraped. The herpes swab test is most accurate either 1st twenty four hours of a lesion which is  one reason why I fear that the other tests were wrong. Other reasons the other tests could have been wrong are that I know that in at least two of the tests the blisters were still wet and such but it was not in the first 24 hours after onset that samples were taken. It's also strange that the rash doesn't always happen when I smoke but it has on occasion. I was thinking maybe it's the combo of two triggers that induce the rash because in each instance of the rash appearing in the blistering form there was ingestion of a plant based high arginine low lysine protein and marijuans. 

[Anniehall]

The niacin makes sense because it's supposed to clear toxins. People say it helps pass drug tests so I took it before to try to pass a pee test for marijuana. It honestly didn't make me test negative though. I hate how it makes me feel all red and pins and needles but it subsides quickly. Do you have a suggestion on how many mgs to take? I just took 500 mgs and noticed a near immediate improvement in the rash already. It's interesting Tetracycline was mentioned because I took that at 11 years old for acne for an entire year. It did work for the acne but my digestion was awful after that. I was always constipated. I don't know why any derm would suggest a child take an antibiotic for that long for such a simple condition. The derm also took me off of it eventually because I was on it that long and the acne returned shortly after. Wish my folks would have thought that maybe the acne was food related back then. I don't know why my mom agreed to the tetra either. I was a kid and I didn't know what antibiotics can do to the gut back then.  My mom still hardly acknowledges the celiacs. She acts like I'm crazy. She asks me repeatedly to try the pastry even though I keep telling her I get a blistering rash. It's either she doesn't believe me or she enjoys knowing I'm suffering, not sure which. 

[knitty kitty]

@Anniehall,

Tea tree oil may be helpful in acne which is caused by bacterial infection because of its antimicrobial properties.  However, it can be very irritating.  

Correlations of the components of tea tree oil with its antibacterial effects and skin irritation

https://www.sciencedirect.com/science/article/pii/S1021949813000082

Overuse or taking too much niacin can cause side effects, including skin rash.  (Everything in moderation.)  

Beating the urine drug test – a case report on niacin toxicity

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5906759/

And...

Toxicity from the use of niacin to beat urine drug screening

https://pubmed.ncbi.nlm.nih.gov/17418450/

"However, nowhere in medical literature, is this claim supported nor is there any recommendation about a safe dose of niacin for such use."

Stay away from the extended release forms of Niacin because they can cause intestinal problems.

Niacin is the form of Niacin that causes flushing.  

Niacinamide does not cause flushing. 

Sounds like your mom is in denial.  Celiac Disease is genetic.  She may be denying your symptoms because she doesn't want to face her own.  Celiac has three hundred different symptoms and everyone can have different combinations of symptoms.  Stick to your guns, but be nice and respectful to your mom.  She's the only one you have.  

[Anniehall]

19 hours ago, Anniehall said:

Thanks for the niacin suggestion. I'm going to try that. Tea tree oil seems to make the lesions worse whether it's a cold sore on my lip or a rash on my butt. Thanks for the info on glue in rolling papers. I smoke out of a bong though so I know it wasn't the papers in these instances. I guess I should maybe stop trying to treat the condition and let it get bad so I can get it swabbed and scraped. The herpes swab test is most accurate either 1st twenty four hours of a lesion which is  one reason why I fear that the other tests were wrong. Other reasons the other tests could have been wrong are that I know that in at least two of the tests the blisters were still wet and such but it was not in the first 24 hours after onset that samples were taken. It's also strange that the rash doesn't always happen when I smoke but it has on occasion. I was thinking maybe it's the combo of two triggers that induce the rash because in each instance of the rash appearing in the blistering form there was ingestion of a plant based high arginine low lysine protein and marijuans. 

I figured so much out today. I tried the niacin I had from way back from trying to pass the pee test. While I was flushing the bumps were subsiding so I thought it's helping but then when I stopped flushing more little bumps appeared. Then I went to my supplements and checked the ingredients in the niacin. There is rice in it. So that was an oh s$#& moment. Then I checked all my other supplements found my iron has rice in it too. I had a b vitamin complex liquid that I had gotten. Decided oh I'll just take this one. Well just now I took some more vitamin C and lysine downed a little b vitamin liquid and then noticed there's a little strawberry on the bottle. It says natural berry flavor. Another oh s$#&. Looked on the back for ingredients. It just says natural flavors. Lesson learned. Avoid mystery natural flavors. So part of the rashing is definitely from the supplements containing foods I react to.  Tomorrow will be a brighter day for me. 

[Anniehall]

So does anyone want to try the lysine and vitamin C megadose? 6000 milligrams a day of each  taken with a protein sources to see if it works for them like it works for me?

[Aggieangel08]

Hi annie, I realize this this post 2 years old, but found your post very insightful, as I've been diagnosed with celiacs and dermatitis herpitiformis, the celiacs rash. I had the same "herpes" scare where docs said that's what they thought it was but tests came back negative. It's just because most doctors are ignorant to dermatitis herpetiformis and it looks very similar herpes, hence its name. I've been gluten free for a very very long time and still have issues. I smoke weed some as well and have been doing tons of research on supplements and going to homeopathic doctors since no GI doctor or dermatologist has seemed to be of any help. I've found studies of Black seed oil helping, along with marshmellow root & slippery elm to heal the gut from the gluten damage, but am trying this l-lysine and vitamin c theory out, as my dermatitis herpetiformis blisters have just gotten worse for no explained reason. Do you have any updates on what you've found to be helpful? 

[Scott Adams]

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch: