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tracym007

At my wits end with this rash!

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Hello everyone. I am posting in hopes that someone has went through my experience and help me figure out if I may be gluten intolerant. Last summer I developed a small rash on my lower left leg on the front. It was a little itchy but I didn't think much of it. I wasn't sure what it was because I am immune to poison ivy. Anyway, it spread on my leg and developed in other areas too- my elbows, right leg, waist (front and back) and became intensely itchy. The itch was so bad that I couldn't help scratch until I bled sometimes. The rash on both legs ended up spreading around both bottom legs to front and back (about 3/4 of bottom leg was covered) and sometimes my legs would swell where the rash was.  I went to numerous doctors, including dermatologists and allergists. The dermatologist diagnosed it as eczema and I was given topical steroid creams, steroid injections, and antibiotics (because some spots looked infected I'm sure from the constant itching). The itching would stop and the rash would start to clear up. But before long (I believe when the steroid injections wore off) the rash would come back and start intensely itching again. I went through this 3 times before the allergist decided to do a biopsy which wasn't conclusive for anything unfortunately. I was so frustrated and through research and talking to a friend of mine who's mom has celiac disease, I asked my doctor to run a celiac blood panel. I was shocked when it came back negative. I was so sure that it had to be because of the gluten. As I read more however I am thinking it maybe could be a gluten intolerance and of course there is no sure test for this. So I am slowly weeding gluten from my diet to see what happens. It's difficult especially since I'm not a big fruit and veggie lover. I also have some other symptoms that I didn't even know were related until I started doing heavy-duty research. I was diagnosed with depression in 2008 and I also have periods of "brain-fog" where I feel like I can't concentrate or think clearly. Also on occasion I have some gut pains and feel bloated. What I am looking for on here I guess is some validation that someone else has experienced the whole rash thing and encouragement as I make the switch to gluten-free living. Thanks!

Also, I have attached a picture that I took today of the rash that is coming back on my leg (sorry about the hair, it really irritates it more when I shave so I haven't done so in several days). I have been eating gluten-free for 3 days now so I'm not sure how long it usually takes to go away if it is from gluten. Does it look like anyone else's that has DH?

Rash.jpg

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Hi Tracy

It's really hard to say from a photo. There are hundreds of rashes out there in the great big world. DH is intensely itchy, like bone deep and it never stops itching. It will keep you awake at night. In fact, it seems to ramp up in intensity (if that's possible) in late afternoon. It almost always appears bilaterally -- spookily echoing itself on the opposite side of the body as if you were an ink blot on a piece of paper & then were folded in the middle to create a duplicate on the opposite side. It often oozes. At it's most extreme, it presents as water filled blisters. It often itch/stings/burns all at one time.

Steroids work on it but the minute the steroids are withdrawn you get a backlash like the fires of hell. 

You really should have it biopsied. The biopsy is taken on a clear patch of skin ADJACENT to an active lesion NOT ON one. There is special staining done to the sample for pathology. You MUST be eating a gluten diet!!!!!! 60% of us with dh test negative on the blood panel for celiac.

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I kept getting very similar rashes prior to diagnosis. The only treatment that seemed to work was Prednisone for extensive periods. The combination of Prednisone and undiagnosed celiac wreaked havoc on my bone density-- which then did lead to a diagnosis. My blood test did show high antibodies and it was confirmed with an endoscopy. I never got a DH diagnosis.

 I have been gluten free for nearly four years now, and rash free for about three years!

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13 hours ago, squirmingitch said:

Hi Tracy

It's really hard to say from a photo. There are hundreds of rashes out there in the great big world. DH is intensely itchy, like bone deep and it never stops itching. It will keep you awake at night. In fact, it seems to ramp up in intensity (if that's possible) in late afternoon. It almost always appears bilaterally -- spookily echoing itself on the opposite side of the body as if you were an ink blot on a piece of paper & then were folded in the middle to create a duplicate on the opposite side. It often oozes. At it's most extreme, it presents as water filled blisters. It often itch/stings/burns all at one time.

Steroids work on it but the minute the steroids are withdrawn you get a backlash like the fires of hell. 

You really should have it biopsied. The biopsy is taken on a clear patch of skin ADJACENT to an active lesion NOT ON one. There is special staining done to the sample for pathology. You MUST be eating a gluten diet!!!!!! 60% of us with dh test negative on the blood panel for celiac.

Thanks for the information. I understand that it is hard to say from a photo. I did have a biopsy performed a few months ago, however they biopsied two lesions on my leg (I didn't know that they were supposed to biopsy beside the lesions unfortunately). It showed perivascular dermatitis which is basically swelling around the veins and nothing else. The swelling was probably due to my constant itching. I normally do get the rash on both sides of my body. This time it's only on one leg which I think is because as soon as the rash returned I started cutting gluten out of my diet and have now been gluten free for 4 days.

I am a little relieved to hear that 60% test negative on the blood panel who have dh because mine all came back negative as well. I am going to just keep strong with this gluten-free diet and give it time to see if this rash heals. Thank you again for all of your advice. I really need the support and encouragement right now.

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9 hours ago, TGK112 said:

I kept getting very similar rashes prior to diagnosis. The only treatment that seemed to work was Prednisone for extensive periods. The combination of Prednisone and undiagnosed celiac wreaked havoc on my bone density-- which then did lead to a diagnosis. My blood test did show high antibodies and it was confirmed with an endoscopy. I never got a DH diagnosis.

 I have been gluten free for nearly four years now, and rash free for about three years!

Thanks for responding TGK112. I am really trying not to go back on the prednisone again and hoping that just eating a gluten-free diet will eventually make the rash heal. My celiac blood panel came back all negative and my skin biopsies did not show anything conclusive either. I have been to several doctors and spent so much money. It is getting so frustrating to have the rash keep coming back after my cortisone injections wear off.  I am so happy to hear that you have been rash-free for 3 years! So it appears that it took a while for your rash to go away after eating gluten-free?

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Tracy it can take years for the antibodies to get out from under our skin. Some longer than others. Don't loose heart though as plenty are relieved of the rash in months. Let's hope you are one of them! One thing you can do too is  go on a low iodine diet for several weeks. Iodine is like throwing gas on a fire as far as the rash is concerned. Go to thyca.org & look at their low iodine diet -- of course nix the gluten as well. 

We must be absolutely RABID about cross contamination. Don't take any chances!!!! NONE! No eating out unless it's a completely gluten-free establishment. Nothing you haven't made with your own hands -- I don't care how good the friend is or what family member made it. The gluten-free diet carries a steep learning curve & others just can't be expected to know all the in's & outs of it. The rash is ultra sensitive to the tiniest amount of gluten. If in a few months you aren't free of it, then try doing ZERO processed gluten-free foods and eat only fresh or frozen fruits, veggies & meat - nothing else.

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at wits end with this rash,

Do you also have GI problems or has this rash preceded any GI issues (regular once a day).

I did a quick search on Celiac.com and came up with this thread on the topic.  I think it is very informative.

Also have you tried a skin cream with Niacinamide in it.  They can be hard to find. I am not recommending their brand and have not tried it but Receuticals sold at Rite aid especially step 3 has Niacinamide as  its active ingredient.  Niacinamide helps regulate histamine releases in the skin triggering the itching you are experiencing.  It would be much cheaper to just buy a bottle of Niacinamide in capsules and mix into your current lotions to see if helps any.

Just a thought.  My local dermatitis has a standing order at my local vitamin store he so commonly recommends the stuff to his patients.

Good luck on your journey.  It worth noting that in the thread I found on Celiac.com he said (the commenter) said a itch sufferer of DH that his skin issues showed up 5 years before his Celiac diagnosis perhaps this what is happening to you.

But I would try rubbing niacinamide into any of your creams/lotions you are using for now to see if it helps.

Posterboy,

 

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On ‎2‎/‎24‎/‎2016 at 10:20 AM, squirmingitch said:

Tracy it can take years for the antibodies to get out from under our skin. Some longer than others. Don't loose heart though as plenty are relieved of the rash in months. Let's hope you are one of them! One thing you can do too is  go on a low iodine diet for several weeks. Iodine is like throwing gas on a fire as far as the rash is concerned. Go to thyca.org & look at their low iodine diet -- of course nix the gluten as well. 

We must be absolutely RABID about cross contamination. Don't take any chances!!!! NONE! No eating out unless it's a completely gluten-free establishment. Nothing you haven't made with your own hands -- I don't care how good the friend is or what family member made it. The gluten-free diet carries a steep learning curve & others just can't be expected to know all the in's & outs of it. The rash is ultra sensitive to the tiniest amount of gluten. If in a few months you aren't free of it, then try doing ZERO processed gluten-free foods and eat only fresh or frozen fruits, veggies & meat - nothing else.

Thanks for the tips. I am trying to be patient and I will look up that low iodine diet as well. My rash is still present and has come back around my waistline again but it doesn't hardly itch at all now. This is promising as every time it has flared up before it was so itchy that I wanted to dig my skin to the bone! I am doing pretty good with not eating gluten so far. I'm not sure if gluten is my problem but I am willing to try just about anything at this point. I just don't have the money to keep going back to different doctors and not getting any conclusive answers. Thanks again for the tips and feedback!

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On ‎3‎/‎1‎/‎2016 at 11:22 PM, Posterboy said:

at wits end with this rash,

Do you also have GI problems or has this rash preceded any GI issues (regular once a day).

I did a quick search on Celiac.com and came up with this thread on the topic.  I think it is very informative.

Also have you tried a skin cream with Niacinamide in it.  They can be hard to find. I am not recommending their brand and have not tried it but Receuticals sold at Rite aid especially step 3 has Niacinamide as  its active ingredient.  Niacinamide helps regulate histamine releases in the skin triggering the itching you are experiencing.  It would be much cheaper to just buy a bottle of Niacinamide in capsules and mix into your current lotions to see if helps any.

Just a thought.  My local dermatitis has a standing order at my local vitamin store he so commonly recommends the stuff to his patients.

Good luck on your journey.  It worth noting that in the thread I found on Celiac.com he said (the commenter) said a itch sufferer of DH that his skin issues showed up 5 years before his Celiac diagnosis perhaps this what is happening to you.

But I would try rubbing niacinamide into any of your creams/lotions you are using for now to see if it helps.

Posterboy,

 

Posterboy,

I do have some occasional gut problems and I'm not always regular. Usually though I do go every other day or so but sometimes I get bad gut cramps. Thanks for recommending that thread, it did help. They described what I am dealing with perfectly with the intense itching, then burning like I want to rip my skin off! I have been gluten-free for about a week and a half now and although the rash is still present on both legs and my waist, it hardly itches at all which I find promising. Before when I was eating gluten the itch was so intense that I had to take Benadryl so I could function and not itch my skin off.

I will try to find the Niacinamide that you have recommended. I am currently on a prescription topical steroid cream but it doesn't seem to do much of anything that I can tell. I am willing to try anything to get relief from this debilitating rash especially before summer hits because I want to swim and be able to wear shorts again.

Thanks again!

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Hello. I have Celiac Disease and developed Pellagra.  

Pellagra is a vitamin deficiency disease caused by a deficiency of niacin.  Symptoms include rashes on the shins and arms and around the neck, basically where the skin is exposed to the sun.  Another symptom is brain fog. If untreated, dementia sets in.  

The small intestine absorbs niacin, other B vitamins, and fat soluble vitamins. When damaged by gluten, the small intestine can no longer absorb these. Even if you don't have diagnosed Celiac Disease, processed foods are under fortified with niacin. Many processed gluten free foods are not fortified at all.  

I had the typical Celiac experience where doctors only treated the symptoms without finding the cause. I took their medicines and only got worse.  I deteriorated physically and mentally.  When I pointed out the rash around my neck, one doctor gave me a test for syphilis (because one goes crazy in the last stages). I felt humiliated.  Fed up, I did my own research.  Causal's necklace, as the rash is called when around the neck, appears in both diseases. That was my first clue. I've found a better doctor who confirmed it was pellagra. 

 The rash appears on the skin where it is exposed to sunlight.  Your rash appeared on your legs during the summer. Were you wearing shorts?  

My arms, especially the one that sits in the car window, gets the rash.  It has scales and blisters both, so it looks like eczema and DH blisters.  It's on my feet where my sandals don't cover, on my lower legs, and will form where there is pressure, like under my waistband and bra.  

I'm taking niacin in the form of nicotinic acid and am feeling much better. My rash improved significantly within four days of starting the niacin supplements.  My brain fog is clearing. 

Please try niacin. Once deficient, it is very difficult to get enough from one's diet to make up that deficiency.  I truly believe niacin deficiency is one of the causes of the brain fog when glutened. 

Hope we all feel better.

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23 minutes ago, knitty kitty said:

Hello. I have Celiac Disease and developed Pellagra.  

Pellagra is a vitamin deficiency disease caused by a deficiency of niacin.  Symptoms include rashes on the shins and arms and around the neck, basically where the skin is exposed to the sun.  Another symptom is brain fog. If untreated, dementia sets in.  

The small intestine absorbs niacin, other B vitamins, and fat soluble vitamins. When damaged by gluten, the small intestine can no longer absorb these. Even if you don't have diagnosed Celiac Disease, processed foods are under fortified with niacin. Many processed gluten free foods are not fortified at all.  

I had the typical Celiac experience where doctors only treated the symptoms without finding the cause. I took their medicines and only got worse.  I deteriorated physically and mentally.  When I pointed out the rash around my neck, one doctor gave me a test for syphilis (because one goes crazy in the last stages). I felt humiliated.  Fed up, I did my own research.  Causal's necklace, as the rash is called when around the neck, appears in both diseases. That was my first clue. I've found a better doctor who confirmed it was pellagra. 

 The rash appears on the skin where it is exposed to sunlight.  Your rash appeared on your legs during the summer. Were you wearing shorts?  

My arms, especially the one that sits in the car window, gets the rash.  It has scales and blisters both, so it looks like eczema and DH blisters.  It's on my feet where my sandals don't cover, on my lower legs, and will form where there is pressure, like under my waistband and bra.  

I'm taking niacin in the form of nicotinic acid and am feeling much better. My rash improved significantly within four days of starting the niacin supplements.  My brain fog is clearing. 

Please try niacin. Once deficient, it is very difficult to get enough from one's diet to make up that deficiency.  I truly believe niacin deficiency is one of the causes of the brain fog when glutened. 

Hope we all feel better.

Knitty Kitty,

Thank you for the advice. I will definitely get some niacin supplements and try them. Can't hurt anything that's for sure. Yes I was wearing shorts last summer when the rash first appeared. I haven't been completely clear since. I tested negative for Celiac Disease and they did do a skin biopsy but now I know that they didn't do it correctly (they biopsied on two lesions, not beside them) so my biopsy did not show anything in particular. But I am highly suspicious of being gluten intolerant especially when I read the description of DH- the intense itching and burning like you want to scratch to the bone!

I'm happy to hear that niacin helped you to get better and I hope it helps me too.

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Niacin definitely helped me with the itching!!!  It has also helped me regain blood sugar control after years of being type two diabetic.  My peripheral neuropathy is going away.  My rashes have cleared.  It's amazed me to feel the difference.  I would be sceptical if I hadn't lived through it myself.  

You might want to consider going dairy free, too.  Gluten and dairy resemble each other to the immune system, so the body may react to both.  One of Niacin's functions is to break down histamine (better than Benadryl).  Another function has to do with nerve health. 

You said you had been diagnosed with depression.  I was, too.  My vitamin D level was extremely low.  After supplementing, the depression lifted.  Again, vitamin D is absorbed in the same part of the small intestine damaged by Celiac Disease.  

Trying to get a diagnosis is frustrating.  I didn't get one for years. I found it more constructive to focus on eating whole fresh foods and avoiding gluten, because that's what you will need to do with a diagnosis. ;)

Hope all this helps!

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On ‎3‎/‎2‎/‎2016 at 5:15 PM, knitty kitty said:

Niacin definitely helped me with the itching!!!  It has also helped me regain blood sugar control after years of being type two diabetic.  My peripheral neuropathy is going away.  My rashes have cleared.  It's amazed me to feel the difference.  I would be sceptical if I hadn't lived through it myself.  

You might want to consider going dairy free, too.  Gluten and dairy resemble each other to the immune system, so the body may react to both.  One of Niacin's functions is to break down histamine (better than Benadryl).  Another function has to do with nerve health. 

You said you had been diagnosed with depression.  I was, too.  My vitamin D level was extremely low.  After supplementing, the depression lifted.  Again, vitamin D is absorbed in the same part of the small intestine damaged by Celiac Disease.  

Trying to get a diagnosis is frustrating.  I didn't get one for years. I found it more constructive to focus on eating whole fresh foods and avoiding gluten, because that's what you will need to do with a diagnosis. ;)

Hope all this helps!

Thanks Knitty kitty- this does help! How much Niacin do you take each day?

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I take 250mg with each meal and snacks.  I read a book "Niacin, the real story" by Drs. Hoffer, Saul, and Foster, which advocates high doses.  I started small and am increasing my dosage.  I'm often sceptical of "cure-all," fad diet, latest health craze books, but this one confirms the research I did prior to stumbling across this book.  I have experienced health improvement since beginning to take niacin.  I can't express how big a difference niacin has made to me.  Pellagra is scary. It progresses very subtlely.  I strongly believe that the brain fog we suffer when glutened is due to a drop in niacin. Niacin is instrumental in breaking down and clearing gluten and histamine from our bodies.  

Edited by knitty kitty
Pillars got changed to pillage with spell check. Pellagra

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tracym007,

I think I mentioned this in another thread post.  And why I mentioned the Niacin(amide) version for your lotion.

Most people do not know there is actually two types of Vitamin B3.  Niacin and the Amide version (non flushing) Niacinamide.  B vitamins often help with stress.  Vitamin B3 helps regulate histamine (think what cause's us to itch) release's in the body and why people flush with the Niacin form but do not with the amide Niacinamide form.

You can also purchase Slo-Niacin bound to Inositol limiting any flushing.  I mentioned the Niacinamide form because it known to help skin issues when applied in a cream.

My local vitamin store has it on standby by order of the dermatologist because when the capsules are mixed in lotions it work 15% percent better than many prescriptions for roseas, acne, and psoriasas etc.

Be sure to titrate (step up in smaller doses) to 250 mg Niacin either using 100mg or 50 mg dosages.  Doubling with each additional dose.  Niacin is widely available in larger doses  but at higher levels can cause an irritating (but natural) flushing (Hives) for the first two to three days of taking higher dose Niacin.

Doctor's tell people at higher dosages (the 250 or 500mg) widely available to take it at night when going to bed and sometimes with Vitamin C I think to limit the flushing affect.

Interesting enough if under a lot of stress Niacin will not flush if your stress is high enough to need that amount of Niacin.  So the flush/hives is actually a natural healthy response but the Niacinamide form does not cause this affect but all the benefits of Vitamin B3 is maintained such as the help with the rash you are experiencing after only a short time (3 to 4 months) using Niacin.

I just wanted you to know to expect it (flushing when using Niacin) so as to not think  you are "allergic" to the vitamin as some people describe it as when they take Niacin in higher dosages not knowing this can happen.

Dr. Myill of the UK says it very well "Niacinamide a little Vitamin the mitochondria (my words/we/the cell/) "must have" to function properly  http://www.prohealth.com/library/showarticle.cfm?libid=16953

Some doctor's get that Pellagra can still be found today but sadly few are looking for it.

Even doctor's of medicine teach Pellagra is not a "Disease of Today" http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ so when they see (rashes etc, dementia (brain fog knitty kitty mentioned) etc it too often is not recognized in a clinical setting.

I say it is time for a Time for a Vitamin Reformation and admit the war on Pellagra is not over as Dr. Heaney suggested.  It has just gone underground.

It should be noted with B-Vitamins as Knitty Kitty takes Niacin more frequent is better.  Beeing water soluble B vitamins should be taking through out the the day for best affect.   With meals and snacks as Knitty Kitty does works best.

2/day works twice as fast. 3/day works 3 times as fast once a day.  You get the idea.

I hope this is helpful.

*** this is not medical advice just my own personal experience like Knitty Kitty from research and having tried it myself.  I tell those who will listen.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things”

See my profile and visit the website there if want to study more about how like Knitty Kitty it  helped my comobrid Pellagra greatly improve my health in about 6 months of taking Niacinamide.  Then tell someone else like we are telling you Niacin(amide) can greatly help if your are a Celiac patient who also has developed Pellagra.

Posterboy,

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    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com