It's hard to tell from photos but it looks like it could potentially be dermatitis herpetiformis. It's a skin condition that goes along with celiac disease. A lot of people with the skin manifestation don't report digestion issues. They can biopsy the skin beside the rash to diagnosis...NOT the rash itself. Hopefully she gets help soon! I know it's miserable!

I am no skin specialist but could it be psoriasis? Sunlight can trigger this condition which usually starts around puberty. It can be treated with coal tar treatments. A LCHF diet has also helped me to clear up some chronic skin infections.

anglyn1 wrote: »

It's hard to tell from photos but it looks like it could potentially be dermatitis herpetiformis. It's a skin condition that goes along with celiac disease. A lot of people with the skin manifestation don't report digestion issues. They can biopsy the skin beside the rash to diagnosis...NOT the rash itself. Hopefully she gets help soon! I know it's miserable!

I agree. This looks a lot like what I had a year or so ago, though over far more skin than what I had when I found my solution.

Like the OP's family member, the doctor was no use for me. Mine just said it was "contact dermatitis" (never mind that I could count on one hand the number of things my hands came in contact with during that time) and gave me a steroid cream that I could only use for about a week at a time. It reduced it by maybe about 10% while I was actively using the cream, and the issue would come back as soon as I stopped. I was actually getting "skin thickening" and it was cracking so bad I was bleeding and the lesions wouldn't heal.

And yeah, I never really got digestion issues, beyond heartburn, when eating gluten, and it wasn't until I stopped that I realized that it caused a number of other, seemingly unrelated issues (chronic headaches, heartburn, anemia, weight gain, etc). I don't have a diagnosis, though, and I haven't had much interest in pursuing one, because the consequences of eating it are such that I'd be miserable having to eat it for six weeks to avoid a false negative.

KetoGirl83 wrote: »

Thank you @anglyn1. She has never had a skin biopsy (who knows why, when they're so quick with drug prescriptions!). It would be wonderful to identify the problem!

For treatment purposes, she doesn't need a skin biopsy, though that does help make a conclusive diagnosis. From a practical standpoint, it's pretty simple -- no gluten (and ideally, no grains at all), and probably no dairy for at least a month. I recommend no dairy, because casein is believed to be cross-reactive with gluten, and even if it doesn't trigger on its own, it might exacerbate the issue and impair results in the middle of an outbreak like this (especially with as bad as this is). It will take at least a month for it to really start clearing up (though it may start to be noticeable after a couple of weeks) and 100% compliance is imperative, otherwise you won't get results at all.

If it does clear up, she can re-introduce dairy and see if it causes her issues. She may also be able to tolerate gluten free grains (certified GF oats, rice, etc), but gluten grains (barley, rye, non-GF certified oats, and wheat) should be excluded from the diet entirely or saved for very rare occasions, depending on tolerance level (I found that it takes a certain level of exposure to get the skin reaction, but I keep away from it, generally, since who knows what it's doing elsewhere before the skin issue appears).

Cutting out gluten was the only thing that worked for me, but it worked like a charm and the condition hasn't been back so long as I stay away from gluten. What's most insidious about it, though, is that it takes a few days of eating gluten for it to start reappearing. Even worse, it takes several weeks for even a small outbreak to heal again. So, even though I can technically tolerate some, I just make a habit to avoid it entirely (made infinitely easier by maintaining a very, very low carb diet).

While they are checking into the possible gluten connection, I would suggest using organic coconut oil as a moisturizer and taking a magnesium supplement. I say this because even if it's not caused by dry skin from dehydration, a little extra hydration couldn't hurt.
My Dad had a terrible outbreak from Agent Orange Syndrome that wasn't responding at all to the high dose meds and prescription creams he was using. I only put the coconut oil on him once because I left his house the next day, but I got him started taking magnesium and sodium for a chronic problem with hydration which was making the rash worse. She probably doesn't need the sodium, but the magnesium will still offer support for new skin cell production and help keep hydration balanced. My Dads Agent Orange rash has never been as under control as it is currently and he had run out of the RX cream before I had went to visit him, so it wasn't that it suddenly began to work. I got him the slo-Mag brand that has magnesium chloride and calcium (I think). I'm pretty sure it's the only way it comes.
Also, just like @Dragonwolf said, 100% compliance to absolutely no gluten would be required to be able to help if that's what's causing it. From what I understand, even trace amounts of gluten create an immune response in Celiacs. Just like even trace contact with nuts for people with allergies to them. Once the body responds to it, the antibody war begins and they have to start all over again.
Best of luck to her.

thubten1 wrote: »

I dont think you would be asking an internet forum if she had a good dermatologist, so I would take her to the nearest university hospital dermatology department

Unfortunately, you'd be surprised how unhelpful a lot of doctors actually are. Sometimes you can get lucky, but especially in cases like this, where the nature of the "rash" indicates that it's just as likely to be caused by dietary factors as environmental or infection, the high level of specialization among doctors very often means that a dietary cause is often overlooked (because such specializations don't really focus on diet/nutrition in general, so they simply aren't aware of the connection enough to look for it as a possibility).

Additionally, as the original post stated, she's already been to several of the best dermatologists her family could find, the treatments from which have proven unhelpful.

A big thing to keep in mind is that doctors are not gods, and they're not infallible. They're only human, and they're limited by their own time and energy. As a result, many only do the bare minimum when it comes to keeping up with research, because the rest of their time and energy is spent on seeing enough patients in order to make enough money to cover costs (fun fact - it costs a doctor roughly $80k a year just to deal with the insurance companies). This ultimately results in only a slow realization by practicing doctors of things like non-GI symptoms of Celiac/gluten intolerance (such as skin conditions not unlike the above).

While I do agree that it's often a good idea to work with a doctor (if for no other reason than to help them learn about situations like this and the role diet plays), dealing with a chronic condition like this, that has stumped every doctor you've seen, is not only despair-inducing, but interferes with one's quality of life. Changing one's diet does not cost anything and does not risk additional harm. Worst case scenario, she's 100% compliant and it doesn't do anything, and she's back to square 1. Best case scenario, it heals it entirely, and it's more data to take to the doctor (and it doesn't even have to heal it all the way to be able to report the trial to the doctor).

I can tell you, personally, that if I relied solely on doctors to try things to fix a situation, I would be as dependent on pain killers as Dr. House, and over 300lbs and gaining. Or, my pancreas and liver would be fried from the heavy pain killers and PCOS meds. I actually do have a university specialist as my Endocrinologist -- one of the best in the entire country, in fact; and an NIH-funded researcher for the past 25 years -- and even she has deferred to me with dietary changes that I've found to actually work for me. Because at the end of the day, I'm the one that has to live with my health issues and it's up to me to do what it takes to fix them.

I'm always in favor of checking with a doctor but also doing your own research because doctors make mistakes. Sadly I've had enough bad experiences to have lost faith in most. I had a neurologist at the best university hospital in my state insist that my brain condition had no symptoms and needed no treatment. Thankfully I did my own research and got two other doctor's opinions that contradicted him. Long story short I ended up needing brain surgery to eliminate the risk of potentially being paralysed and now the majority of symptoms that I supposedly shouldn't have been having have improved considerably.

I see absolutely no harm in trying a dietary intervention when several dermatologists have already been consulted to no avail.

ettaterrell wrote: »

Eczema if it's scaly itchy and mostly in joint areas and scalp

I also think it looks like Eczema. I have Eczema on my both of my hands and on my left eyelid (a small line that runs along just behind the eyelashes). The only thing I've found which keeps the itchiness at bay and keep the skin from getting scaly from my scratching at it is 100% pure ARGAN OIL. It's actually oil pressed from a nut which originates in Madagascar. I have to apply it daily and I do this religiously at night just before I go to bed because I don't want the Eczema to reappear (the itching and scratching are constant and horrible and maddening). Argan Oil has a very light mild pine scent which dissipates within just couple of minutes of applying. It also feels nice and light on the skin. I have noticed that since I started using argon oil on my hands and face the oil plumps up the skin nicely and lessens the look of lines and wrinkles (bonus!). My once oily facial skin is no longer oily and my eyelashes seem longer / fuller (or perhaps just more healthy?! lol). The stuff is kind of pricey, but it's pure and I only use a few squirts of it per night so one 2-ounce bottle easily lasts me at least a month if not a little longer (5-6 weeks?). Here's where I get mine and I haven't found anywhere cheaper that has equal or better quality product:

https://taprootfarmsak.com/moroccan-argan-oil

Anyway, I read somewhere (http://www.thedoctorwithin.com/allergies/allergies-the-threshold-of-reactivity/) that skin conditions and often allergies are often related to your "toxic load." I've been working on lightening my toxic load for just this reason. Hope this info is helpful.

Since I have been studying fermented foods, they are like Keto ~ in that ~ they can heal and prevent many things like this.

If you google/youtube fermented foods, you'll find a lot of info. The gut microbes/probiotics are usually the "root cause". In other words, it starts with what we eat. Pills and topical treatment only treat the symptoms.

http://lusaorganics.typepad.com/clean/2013/04/heal-eczema-naturally-step-3.html

There are many more websites. The above is just something I found quickly.

It doesn't hurt to take probiotics in the mean time.

I hope this helps....

Dan the Man from Michigan

macchiatto wrote: »

Great post, @DragonWolf.
And OP, wow, I feel for her. That looks miserable. I'm not familiar with the other conditions mentioned but I've had a lot of experience with eczema in family members. My brother, a cousin and one of my twins have all had very severe eczema.

I don't remember what finally worked for my cousin but dietary interventions played a big role for both my brother and my son. My son couldn't eat any wheat, corn, strawberries, peanuts or sesame. He tested negative to all but peanuts on the allergist's skin test so the allergist said he wasn't allergic and should be able to eat those things again ... within a week, his eczema was awful again. I've had a lot of experiences w/doctors b/c of all the health conditions among the four of us, good and bad, but I agree you have to do your own research and sometimes I've gotten great advice from Internet forums that's helped point me in the right direction. We did some experimenting with my son and the food/eczema connection was very strong even with tiny amounts, but it would show up a day or two later. When we explained this to our allergist he was like, "Huh. That's an atypical reaction. Interesting!" But I think that type of data is helpful for drs/specialists to get.

It's an "atypical reaction" because I'm willing to bet it's not an allergy, but a sensitivity/intolerance. Intolerances have a different immune response to allergies, so allergy tests aren't likely to pick them up.

The immune system is kind of like the military - they have several branches. The allergist only looks for the "army," the Celiac specialist only looks for the "navy," but what happens when it's the "marines" your body is sending out?

I wonder if a holistic doctor would be better for tracking down the root cause rather than a dermatologist?

I am not sure what it is but it does kind of look like eczema I had on my elbows extending onto my forearms and behind my ears when I was her age. Behind my ears was the worse because I would sweat then the skin would peel and it would be raw. Nothing helped it at all and I eventually "grew" out of it by the time I was around 15-16 yo. I do have flare ups every once in awhile when my skin gets too dry in the winter or if I am really stressed out, I will have spots pop up. It's not as consolidated as hers is on her hands and wrist, I get the smaller spots like she has further up her arms now.

I do hope that she finds some relief!

ladipoet wrote: »

ettaterrell wrote: »

Eczema if it's scaly itchy and mostly in joint areas and scalp

I also think it looks like Eczema. I have Eczema on my both of my hands and on my left eyelid (a small line that runs along just behind the eyelashes). The only thing I've found which keeps the itchiness at bay and keep the skin from getting scaly from my scratching at it is 100% pure ARGAN OIL. It's actually oil pressed from a nut which originates in Madagascar. I have to apply it daily and I do this religiously at night just before I go to bed because I don't want the Eczema to reappear (the itching and scratching are constant and horrible and maddening). Argan Oil has a very light mild pine scent which dissipates within just couple of minutes of applying. It also feels nice and light on the skin. I have noticed that since I started using argon oil on my hands and face the oil plumps up the skin nicely and lessens the look of lines and wrinkles (bonus!). My once oily facial skin is no longer oily and my eyelashes seem longer / fuller (or perhaps just more healthy?! lol). The stuff is kind of pricey, but it's pure and I only use a few squirts of it per night so one 2-ounce bottle easily lasts me at least a month if not a little longer (5-6 weeks?). Here's where I get mine and I haven't found anywhere cheaper that has equal or better quality product:

https://taprootfarmsak.com/moroccan-argan-oil

Anyway, I read somewhere (http://www.thedoctorwithin.com/allergies/allergies-the-threshold-of-reactivity/) that skin conditions and often allergies are often related to your "toxic load." I've been working on lightening my toxic load for just this reason. Hope this info is helpful.

Thanks! I'll let my daughter know .. We have been fighting hers since she was 3!!! Face, arms legs very hard for a teen to deal with but I think she's almost out grown it if that's even possible