Tex - Question on chronic skin issues

humbird753 · Post by **humbird753** » Mon Nov 03, 2014 2:08 pm

Hi Tex - this question isn't for myself. A friend of mine has recently told me about a rash she has had for over 2 months, and a lot of itching involved. The rash is all over her body. She has seen a dermatologist, but of course they have no answers for her. My question is - couldn't this be an autoimmune reaction? And if it is, would going GF be beneficial even though it does not affect the digestive tract?

Paula

Post by **tex** » Mon Nov 03, 2014 3:16 pm

Hi Paula,

Of course I couldn't diagnose her case even if I could see the rash (since I'm not a doctor), and there are various possibilities. However, since the rash is all over her body, that is a very strong indication that a food-based trigger, rather than a skin contact trigger is causing the rash. The most likely cause is dermatitis herpetiformis (DH), which is a rash caused by gluten sensitivity. And you are correct that some people develop DH even though they never develop the gastrointestinal symptoms of gluten sensitivity (or celiac disease).

One would think that doctors would recognize DH when they see it, but unfortunately, that doesn't seem to be the case. Like MC, they consider it to be a rare condition, so they don't expect to see it, and that becomes a self-fulfilling prophecy. Have your friend look at the photos (and read the discussion) on the website at the link below, to see if they look anything like her rash. If you click on the photos you can see an enlargement.

Dermatitis herpetiformis

Note that the article says that the cause is unknown, but that's BS. That's just part of the problem with the medical community having a very poor understanding of gluten sensitivity and it's treatment. The cause of DH is untreated gluten sensitivity. The problem with DH is that just avoiding gluten will not promptly resolve the rash (and that's part of the reason why many doctors don't understand it). Sometimes it can take years for the rash to completely disappear, and many people will give up too soon, because they think that the diet is not working. Also, if they are not strict enough with their diet, they may continue to react. As the article mentions, a medication used to treat leprosy can be used to control the rash (dapsone). (Well, actually the article doesn't mention leprosy, but dapsone was initially developed to treat leprosy).

You are quite correct that it is an autoimmune issue, and a strict GF diet will be necessary if she actually has DH.

If it isn't DH, it could be something such as a sensitivity to an ingredient in a detergent that she is using, or the rash could be caused by mastocytosis (a systemic mast cell issue), triggered by heat, or exercise, or who-knows-what. A rash of that sort would appear more like a heat rash (it wouldn't have the blisters or pustules seen with DH). Or it could be dermatomyositis, but if it were dermatomyositis she should also be having inflammation problems with muscles and/or joints.

I hope that some of this is helpful.

Tex

humbird753 · Post by **humbird753** » Mon Nov 03, 2014 4:44 pm

Thank you so much for your response, Tex. You have given several possibilities other than DH. I'll let her look at the pictures and article you've attached from Medliner Plus, together with the information on the other possibilities you mentioned. She can decide from there.

As far as I am concerned, everyone should be GF.

Paula

humbird753 · Post by **humbird753** » Mon Nov 03, 2014 5:57 pm

I was reading your response again, and wanted to note that she is very athletic. She works out just about every day since she does triathlons when seasonal here, and also says she has a lot of energy and exercising is a way to eliminate some of that (maybe saying she is hyper would be a better term for her energy). If that is the case then she may have mastocytosis.

I will give her the information, though, and hope it gets her heading in the right direction for relief.

Thank you again for your time and knowledge.

Paula

Post by **tex** » Mon Nov 03, 2014 7:32 pm

Paula,

This may not apply to her but I agree that having so much energy that she needs to exercise in order to eliminate some of it might indeed suggest hyperactivity. Whether or not autism is involved, the article at the following link suggests an association between hyperactivity (autism) and mastocytosis.

A survey of the Mastocytosis Society's members (www.tsmforacure.org) indicated that the rate of autism in children with mastocytosis is at least 10-fold higher than that reported for the general population.

Mast cells disrupt the gut-blood-brain barriers and contribute to autism

You're most welcome.

Tex

humbird753 · Post by **humbird753** » Mon Nov 03, 2014 9:12 pm

I find it interesting the association you point out about hyperactivity (autism) and mastocytosis. My friend has a younger brother who was diagnosed at a very young age with Autism Spectrum Disorder (ASD), ADHD, and more. Her brother is now about 38, continues to live with his parents, and has a job he does okay with. It's obvious he will probably need to be assisted/monitored his entire life. My friend is 45, very hyper, has always had skin issues, but apparently this flare is pretty out of control in comparison. BTW, I was wrong when I said her chronic rash has been going on for a couple of months. I thought that was the case, but when I asked her again she said it has been 4 or 5 months. She excelled academically. In spite of the differences they had with learning, it does make me wonder if there's a genetic connection. My friend also has a son who is 11 years old, and he has always been very hyper so she keeps him involved in daily sports activities (hockey, football, etc.) My friend has not mentioned in detail the results of a recent doctor appointment she took her son to, but she did mention ADD. I don't know if she has him on prescription drugs for it, though.

I don't mean to waste your precious time on this, I just thought your 2nd response was interesting and somehow might be relevant so I wanted to comment further.

Paula

Post by **tex** » Mon Nov 03, 2014 9:45 pm

It's looking more and more as though mastocytosis may be the problem. Of course a GF diet might do wonders, but as long as this has been going on, the rash will probably be very difficult to control.

This is unproven theory of course (my own), but IMO, maintaining a high level of vitamin D may be very important, because the active form of vitamin D has the ability to suppress mast cell development and activation. A combination of plenty of vitamin D and a corticosteroid may be the optimal treatment, because the corticosteroid will cause a synergistic effect with the vitamin D to suppress the inflammation.

Tex

Zizzle · Post by **Zizzle** » Tue Nov 04, 2014 1:04 pm

Paula,
I have the autoimmune rash of Dermatomyositis. Interestingly, it seems to strike many elite athletes in the "prime" of training, and no one really knows why. Characteristic locations of the itchy rash are knuckles, chest, back, outer thighs, buttocks, outer arms, face (especially around the eyes) and scalp. It looks like red to purple goosebumps on sunburn.

humbird753 · Post by **humbird753** » Tue Nov 04, 2014 3:21 pm

Tex, I agree it seems most likely to be mastocytosis. But possibly the visual appearance of her rash would confirm otherwise.

Zizzle, thank you for pointing out the physical appearance of the type of rash that occurs with dermatomyositis. Have you been able to get yours under control?

Paula

Zizzle · Post by **Zizzle** » Tue Nov 04, 2014 4:11 pm

Thankfully my rash is under control thanks to LDN and strict diet. I have residual (non-itchy) rash on my knuckles (gottron's papules) and eyelids (heliotrope). Any amount of gluten exposure threatens to flare the rash, and I wake up with red circles around my eyes the next day which can last up to a week!

brandy · Post by **brandy** » Tue Nov 04, 2014 5:02 pm

Zizzle, so glad for you!

humbird753 · Post by **humbird753** » Wed Nov 05, 2014 10:34 am

Z - glad to hear you're getting yours under control. Sounds like the LDN has helped.

Paula

humbird753 · Post by **humbird753** » Wed Nov 05, 2014 2:48 pm

Z - what is the diet protocol you follow for your skin flares?

Gabes-Apg · Post by **Gabes-Apg** » Wed Nov 05, 2014 2:56 pm

Paula
in line with recommending the removal of gluten from the diet, the person should remove/minimise contact with any inflammatory item/activity etc.

histamine reactions are not just food based, they are also caused by pollen, chemicals, dust, mould, bad air conditioning, etc etc. i think it was mary beth that used to have a histamine reaction to running. Things like dental work, getting hair dyed etc can also be major trigger.

It is not easy to eliminate ALL items, the aim should be to minimise them as much as possible and help the body, so it doesnt have major inflammation reactions.
on the supplement side, high doses of Vit C, Magnesium and Zinc will reduce histamine inflammation in the body.

hope this helps

Zizzle · Post by **Zizzle** » Wed Nov 05, 2014 3:37 pm

Z - what is the diet protocol you follow for your skin flares?

Paula,
I was on the Autoimmune Paleo Protocol for about 5 months. It was hard!! No grains, dairy, eggs, legumes, nightshades, nuts, or seeds. My only starches were sweet potatoes, squashes, plantains, fruit, tapioca starch and arrowroot starch. Made lots of bone broth.

Once I got on LDN, the skin starting improving quickly, so I slowly started reintroducing foods over weeks...first seed based spices, then white rice, then cashews and nut butters, then white potatoes, then eggs baked into baked goods. I added quinoa for another grain (well, seed). Eventually I added cooked tomato sauce and other occasional nightshades. Finally, I allowed small amounts of corn (mostly organic/non-GMO) back in (probably a mistake). I'm eating more made with eggs now, but I still won't sit down to a plate of eggs.

Although my rash is clear, I still have D, so I still don't have all the answers. I took an antifungal med for yeast overgrowth for almost 3 months, and that did not help things. The rash seems to operate apart from the D, except when I get glutened -- then they both flare like crazy!