OT? Frustrated and looking for help - Rash

[Guest guest]

Hi Everyone,

I have been on SCD/GAPS since January 2008. This post is a bit off-topic but I

don't know who else to ask. I have been to doctors and naturopaths, no one can

help me with this. I have been getting a rash since January 2008 and cannot

figure out what the heck is going on. It cannot be die off, really, 2 years and

now 8 bouts of it? It never seems to come at a time when die-off is appropriate,

except for the very first one (it actually started the day before I went on

SCD).

Anyways I have written about it on my blog and posted a picture. Please have a

look and if you have any suggestions or have seen it before, please let me know.

http://scdkatfood.blogspot.com/2009/10/frustrated-and-looking-for-your-help.html

Thanks,

Kat

[Guest guest]

Kat,

I get a similar type of rash on the sides of my body like near the ribs

sometimes down to the hip all the way up the armpit. It comes and goes. I have

seen derm docs too.

I always figured it was a flare on my skin?

Any info you get I would greatly appreciate you sharing with me!

Jodi

[Guest guest]

Hi Kat, wow, that looks awful. Could it possibly be a very bad

case of seborrheic dermatitis? It is caused by a fungus called malassezia. This

is just a wild guess. http://www.mayoclinic.com/health/seborrheic-dermatitis/DS00984

Please let us know if you find out what is causing it.

Carol

CD 21 yrs SCD 5 yrs

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of scdkat

I have been on SCD/GAPS since January 2008. This post is a bit off-topic but I

don't know who else to ask. I have been to doctors and naturopaths, no one can

help me with this. I have been getting a rash since January 2008 and cannot

figure out what the heck is going on. It cannot be die off, really, 2 years and

now 8 bouts of it? It never seems to come at a time when die-off is

appropriate, except for the very first one (it actually started the day before

I went on SCD).

Anyways I have written about it on my blog and posted a picture. Please have a

look and if you have any suggestions or have seen it before, please let me

know.

http://scdkatfood.blogspot.com/2009/10/frustrated-and-looking-for-your-help.html

[Guest guest]

I don't think it could be, my doctor did swabs and a skin biopsy and nothing

shows up. She prescribed an anti-fungal/anti-biotic cream once when it got

infected. It cleared up the infection but not the rash. I have tried coconut

oil, baking soda, shea butter etc, anything I put on it seems to make it worse

Just not sure what else to try, although a few people have suggested new things.

Kat

>

> Hi Kat, wow, that looks awful. Could it possibly be a very bad case of

> seborrheic dermatitis? It is caused by a fungus called malassezia. This is

> just a wild guess.

> http://www.mayoclinic.com/health/seborrheic-dermatitis/DS00984 Please let

> us know if you find out what is causing it.

>

> Carol

>

> CD 21 yrs SCD 5 yrs

>

[Guest guest]

Hi Jodi,

I don't know what it would be a flare of. I just can't seem to connect it to

anything. Got a bit of good feedback so far, I'll put another post on my blog

with all suggestions once I've gone through everything.

Thanks,

Kat

>

> Kat,

>

> I get a similar type of rash on the sides of my body like near the ribs

sometimes down to the hip all the way up the armpit. It comes and goes. I have

seen derm docs too.

> I always figured it was a flare on my skin?

>

> Any info you get I would greatly appreciate you sharing with me!

>

> Jodi

>

[Guest guest]

Kat,

I've tried all of that stuff too including oil of oregano, chamomile

compresses..

I thought it was linked to eating something and instead of flaring in my gut I

just flared on my skin.

I have had this on and off for quite a while.

Never on my neck.. it does affect my breasts too all the way down to hip and

near armpit.

Does yours just come and go too?

Jodi

[Guest guest]

Hm I wouldn't say " come and go " more like once every 2-4 months it erupts and

stays for at least 4 days solid. It always goes through the same pattern,

swollen red itchy bumps that blister over and then crust. The process is 4-6

days then the itching stops. Scars take a little while to go away. A few have

scarred maybe permanently..

Kat

>

> Kat,

>

> I've tried all of that stuff too including oil of oregano, chamomile

compresses..

> I thought it was linked to eating something and instead of flaring in my gut I

just flared on my skin.

>

> I have had this on and off for quite a while.

> Never on my neck.. it does affect my breasts too all the way down to hip and

near armpit.

>

> Does yours just come and go too?

>

> Jodi

>

[Guest guest]

That's not what I have..

Mine doesn't bunch up and crust.. totally red and swollen- sometimes it hurts

just twisting or moving my limb.

Just are like these red bumps and then gradually disappears over 4-6 days as

well. And yeah.. it does seem to happen like every 2-4 months. Mine don't

crust over they just dissipate. No scars. Seems to happen in the same areas

though..

Jodi

[Guest guest]

Hi Kat

My mum has this skin condtion http://dermnetnz.org/dermal-infiltrative/jessner.html They come and go. The images on this site are not that good. It can get much worse. Google for images of Jessner lymphoctic infiltrate.

Sky

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[Guest guest]

Kat

Have you visited a dermatologist during the past year; is that one of the doctors you mention? I would hope that a dermatologist can offer some suggestions at least, even if they can't tell you exactly what the cause is.

The rash looks similar to the eczema I deal with on my hands, and the occasional bouts of psoriasis I get on my scalp and back and sometimes my legs. Some of the triggers for me are stress and certain foods, but I also have to occasionally change the soaps and shampoos and lotions I use because my body will build up an intolerance to something over time. I always purchase fragrance-free hypoallergenic soaps, lotions, etc., but my skin seems to be super sensitive (my dermatologists always tell me I have unusually thin, fragile skin) and eventually I have to change to a different brand because my skin starts reacting.

The rashes have improved tremendously the longer I've been on SCD, by the way. Since year 3 on SCD (I'm into my 6th year) I've only had to deal with contact dermatitis and eczema; no bouts of psoriasis. Maybe this rash is something that will disappear when you've been on SCD another year or two. I know, not a helpful or hopeful suggestion [sigh].

Not fun to deal with at all. Wish I could help more.

Kim M.

SCD 5+ years

[Guest guest]

Thanks for the link. It doesn't quite sound like what I'm experiencing but I

will print this out and bring it to my next doctor's appt. Also, I never get it

on my face ever.

Thanks,

Kat

>

> Hi Kat

>

> My mum has this skin condtion

http://dermnetnz.org/dermal-infiltrative/jessner.html They come and go. The

images on this site are not that good. It can get much worse. Google for images

of Jessner lymphoctic infiltrate.

>

> Sky

>

[Guest guest]

Hi Kat,

My mum has never had it on her face either. Mainly her neck,back,chest and arms.

Sky

To: BTVC-SCD Sent: Sun, 1 November, 2009 1:12:10 AMSubject: Re: OT? Frustrated and looking for help - Rash

Thanks for the link. It doesn't quite sound like what I'm experiencing but I will print this out and bring it to my next doctor's appt. Also, I never get it on my face ever.Thanks,Kat>> Hi Kat> > My mum has this skin condtion http://dermnetnz. org/dermal- infiltrative/ jessner.html They come and go. The images on this site are not that good. It can get much worse. Google for images of Jessner lymphoctic infiltrate.> > Sky>

Get more done like never before with Yahoo!7 Mail. Learn more.

[Guest guest]

I am addressing this to those who have skin issues. There is a product range

that is made in Australia that I just love. It is about as natural as one can

find and that will still get the job done. The bath gels and

shampoos/conditioners are really wonderful. It isn't the least expensive I've

used, but definitely worth it for now. To learn more about them go to

http://www.puristusa.com/

Part of what might be many of our skin problems could be in the sulfates that

are in just about every liquid soap and handwash. They are 'small molecule'

compounds that will go through the skin very easily and therefore irritate

sensitive people (those with compromised immune systems whose bodies react

easily). These products contain similar ingredients but they use 'large

molecule' compounds so that it doesn't go into the skin and cause irritation.

They also do not use petroleum products and parabens.

Amelia

>

> Kat

>

> Have you visited a dermatologist during the past year; is that one of the

doctors you mention? I would hope that a dermatologist can offer some

suggestions at least, even if they can't tell you exactly what the cause is.

>

> The rash looks similar to the eczema I deal with on my hands, and the

occasional bouts of psoriasis I get on my scalp and back and sometimes my legs.

Some of the triggers for me are stress and certain foods, but I also have to

occasionally change the soaps and shampoos and lotions I use because my body

will build up an intolerance to something over time. I always purchase

fragrance-free hypoallergenic soaps, lotions, etc., but my skin seems to be

super sensitive (my dermatologists always tell me I have unusually thin, fragile

skin) and eventually I have to change to a different brand because my skin

starts reacting.

>

> The rashes have improved tremendously the longer I've been on SCD, by the way.

Since year 3 on SCD (I'm into my 6th year) I've only had to deal with contact

dermatitis and eczema; no bouts of psoriasis. Maybe this rash is something that

will disappear when you've been on SCD another year or two. I know, not a

helpful or hopeful suggestion [sigh].

>

> Not fun to deal with at all. Wish I could help more.

>

> Kim M.

> SCD 5+ years

>

[Guest guest]

Also, it's not die off but it may be a reaction from what is known as

Herrings Law of Cure - that as your body cures, you successively

re-experience from your early illness - though often not always in

precisely the same way. And that the breaking out into symptoms

in various places on your body is part of the cure.

Anyway - for more detail, google the expression - kind of in a rush to

get out of the house at the moment.

Mara, in haste.

[Guest guest]

I've had rashes that look like this off and on during my life. Much

less so now that my diet is SO limited. I've never been

told anything other than " eczema " . Food sins caused most of it and

on my hands, contact dermatitis. One thing I did notice is that

there were times when the rash was better off left alone to dry in

the air, as it were, than having any kind of stuff put on it. It was

less comfortable in a way but didn't get worse. Good luck, these

things are miserable to have to live with.

[Guest guest]

I remember a post in which someone explained that rash appeared after using some

kind of soap/shampoo/gel or something that contained gluten.

I'm sorry but I can't remember the details.

>

> Hi Everyone,

> I have been on SCD/GAPS since January 2008. This post is a bit off-topic but I

don't know who else to ask. I have been to doctors and naturopaths, no one can

help me with this. I have been getting a rash since January 2008 and cannot

figure out what the heck is going on. It cannot be die off, really, 2 years and

now 8 bouts of it? It never seems to come at a time when die-off is appropriate,

except for the very first one (it actually started the day before I went on

SCD).

>

> Anyways I have written about it on my blog and posted a picture. Please have a

look and if you have any suggestions or have seen it before, please let me know.

>

>

http://scdkatfood.blogspot.com/2009/10/frustrated-and-looking-for-your-help.html

>

> Thanks,

> Kat

>

[Guest guest]

I've gotten weird rashes before and find prescription steroid cream to be

helpful. Specifically one called triamcinolon. I wish you the best. Rashes

SUCK.

> >

> > Hi Everyone,

> > I have been on SCD/GAPS since January 2008. This post is a bit off-topic but

I don't know who else to ask. I have been to doctors and naturopaths, no one can

help me with this. I have been getting a rash since January 2008 and cannot

figure out what the heck is going on. It cannot be die off, really, 2 years and

now 8 bouts of it? It never seems to come at a time when die-off is appropriate,

except for the very first one (it actually started the day before I went on

SCD).

> >

> > Anyways I have written about it on my blog and posted a picture. Please have

a look and if you have any suggestions or have seen it before, please let me

know.

> >

> >

http://scdkatfood.blogspot.com/2009/10/frustrated-and-looking-for-your-help.html

> >

> > Thanks,

> > Kat

> >

>

[Guest guest]

It is a type of dermititis that comes with celiac and other digestive disorders. Be careful to not let anything into the wounds. Most items you come in contact with have some sort of grain or sugar that will get into your bloodstream if the wound is open. I know, cause I have the same thing on my hands. Check all your detergents, lotions, everything you use and touch. I have latex gloves, without the corn starch, everywhere in the house and car. When your rash is clear you should be fine. The rash can be triggered by foods, stress or contact but it's very difficult to know what. It could also be die-off but who knows? Are you keeping a food diary? Good luck to you.

To: BTVC-SCD Sent: Sat, October 31, 2009 2:46:50 PMSubject: Re: OT? Frustrated and looking for help - Rash

I remember a post in which someone explained that rash appeared after using some kind of soap/shampoo/ gel or something that contained gluten.I'm sorry but I can't remember the details.>> Hi Everyone,> I have been on SCD/GAPS since January 2008. This post is a bit off-topic but I don't know who else to ask. I have been to doctors and naturopaths, no one can help me with this. I have been getting a rash since January 2008 and cannot figure out what the heck is going on. It cannot be die off, really, 2 years and now 8 bouts of it? It never seems to come at a time when die-off is appropriate, except for the very first one (it actually started the day before I went on SCD).> > Anyways I have written about it on my blog

and posted a picture. Please have a look and if you have any suggestions or have seen it before, please let me know.> > http://scdkatfood. blogspot. com/2009/ 10/frustrated- and-looking- for-your- help.html> > Thanks,> Kat>

[Guest guest]

Thanks so much everyone for your help. I posted a new entry on my blog kind of

putting together all the ideas and suggestions: scdkatfood.blogspot.com

I will figure this out someday!

Kat

>

> Hi Everyone,

> I have been on SCD/GAPS since January 2008. This post is a bit off-topic but I

don't know who else to ask. I have been to doctors and naturopaths, no one can

help me with this. I have been getting a rash since January 2008 and cannot

figure out what the heck is going on. It cannot be die off, really, 2 years and

now 8 bouts of it? It never seems to come at a time when die-off is appropriate,

except for the very first one (it actually started the day before I went on

SCD).

>

> Anyways I have written about it on my blog and posted a picture. Please have a

look and if you have any suggestions or have seen it before, please let me know.

>

>

http://scdkatfood.blogspot.com/2009/10/frustrated-and-looking-for-your-help.html

>

> Thanks,

> Kat

>

[Guest guest]

Hi Kat,

If it's DH--then doing a biopsy while gluten free will show nothing--you have to ingest gluten to see the IGA thingys under the microscope. When I was in Pharmacy school eons ago--a Dapsone challenge was given and if the rash disappeared, it was considered diagnostic of DH. Are you seeing a dermatologist or just a PCP?. I don't know where you live, but if you are near a teaching hospital, try to get into the derm dept. Teaching hospitals see a lot of 'stuff' that regular docs don't.

Terry

[Guest guest]

Hi Terry,

If it is DH and the rash is present, then it can only be present because of IgA

antibodies in the skin. That is my understanding after reading numerous papers

on it. The biopsy should work. My doctor thinks I have been exposed each time I

have gotten the rash.

I will be seeing a dermatologist. I'm not sure what a PCP is? I live in Canada.

I can ask my doctor when I see her next (once she has the results).

The Dapsone challenge sounds interesting but is too late for this time. Maybe

I'll bring that up with my doctor too. I just don't like taking any medications,

especially one that doesn't prevent the rash or intestinal damage, it just makes

the rash go away sooner.

Anyways, we'll see what happens.. I wouldn't be surprised if the biopsy showed

nothing..

Thanks for your input!

Kat

>

> Hi Kat,

> If it's DH--then doing a biopsy while gluten free will show nothing--you have

to ingest gluten to see the IGA thingys under the microscope. When I was in

Pharmacy school eons ago--a Dapsone challenge was given and if the rash

disappeared, it was considered diagnostic of DH. Are you seeing a dermatologist

or just a PCP?. I don't know where you live, but if you are near a teaching

hospital, try to get into the derm dept. Teaching hospitals see a lot of 'stuff'

that regular docs don't.

>

> Terry

>

[Guest guest]

Hi Kat--

How frustrating for you. A PCP is a primary care physician.

Did your biopsy show IG A in the lesion? What was the histopathology report? You said the biopsy was inconclusive...yet there must have been some histopath of infiltrates, neutrophils in the lesion?

There are some rare bullous diseases that look like DH: Pemphigoid Vegetans looks like DH but is usually involved with IBD.

You probably know much more than I , but I do know that if you have been gluten free, that you can get false negatives with the biopsy.

Bullous pemphigoid also has raised eosinophils and IG E. These are related autoimmune diseases and I wonder if you would benefit from LDN--Low dose Naltrexone, which has been mentioned here and does help auto immune diseases. Do you have any joint or other symptoms?

Just curious. I like a medical mystery.

All the best,

Terry

Re: OT? Frustrated and looking for help - Rash

Hi Terry,If it is DH and the rash is present, then it can only be present because of IgA antibodies in the skin. That is my understanding after reading numerous papers on it. The biopsy should work. My doctor thinks I have been exposed each time I have gotten the rash.I will be seeing a dermatologist. I'm not sure what a PCP is? I live in Canada. I can ask my doctor when I see her next (once she has the results).The Dapsone challenge sounds interesting but is too late for this time. Maybe I'll bring that up with my doctor too. I just don't like taking any medications, especially one that doesn't prevent the rash or intestinal damage, it just makes the rash go away sooner.Anyways, we'll see what happens.. I wouldn't be surprised if the biopsy showed nothing..Thanks for your input!Kat>> Hi Kat,> If it's DH--then doing a biopsy while gluten free will show nothing--you have to ingest gluten to see the IGA thingys under the microscope. When I was in Pharmacy school eons ago--a Dapsone challenge was given and if the rash disappeared, it was considered diagnostic of DH. Are you seeing a dermatologist or just a PCP?. I don't know where you live, but if you are near a teaching hospital, try to get into the derm dept. Teaching hospitals see a lot of 'stuff' that regular docs don't.> > Terry>

[Guest guest]

I love medical mysteries too, but certainly don't enjoy being one!

My first biopsy showed neutrophils etc in the lesion, no IgA. This is normal for

DH and it is why the unaffected skin must be biopsied. My PCP did the first

biopsy and then consulted with a non-practicing dermatologist who told her to do

another one of the unaffected skin.

I checked out those other rash types you wrote about but none really look like

mine. Mine aren't fluid-filled, and not very large. I used to have joint pain

(knees, hips, no swelling though) but that resolved on its own a while ago

before SCD. I don't think it's related to IBD. The only pictures I have seen

that look like mine are DH.

I'm mostly frustrated that I was not properly diagnosed before going gluten-free

even though I saw 2 GI specialists. Neither one believed I had Celiac, because I

" looked " healthy (even though I was 90 lbs) and no one in my family had it. And

my last GI told me that even if I had Celiac, that contamination in small

amounts doesn't matter, it's a myth. Wow was he ever wrong..

Anyways, we'll keep trying to figure it out. I'm still searching and looking up

different types of rashes in case anything stands out.

Thanks,

Kat

>

> Hi Kat--

>

> How frustrating for you. A PCP is a primary care physician.

>

> Did your biopsy show IG A in the lesion? What was the histopathology report?

You said the biopsy was inconclusive...yet there must have been some histopath

of infiltrates, neutrophils in the lesion?

>

> There are some rare bullous diseases that look like DH: Pemphigoid Vegetans

looks like DH but is usually involved with IBD.

> You probably know much more than I , but I do know that if you have been

gluten free, that you can get false negatives with the biopsy.

>

> Bullous pemphigoid also has raised eosinophils and IG E. These are related

autoimmune diseases and I wonder if you would benefit from LDN--Low dose

Naltrexone, which has been mentioned here and does help auto immune diseases. Do

you have any joint or other symptoms?

>

> Just curious. I like a medical mystery.

>

> All the best,

>

> Terry