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Dermatologist Was Mean, Made Me Cry...


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27 replies to this topic

#16 mushroom

 
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Posted 30 May 2012 - 09:34 AM

So far as I know, sea salt is okay; it is table salt that has iodine added to it.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
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Potato starch free July 2009
(Totally) corn free Nov. 2009
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#17 eatmeat4good

 
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Posted 30 May 2012 - 09:42 AM

I feel for you.
It took me over a year to heal my DH.
I kept wanting to eat eggs but absolutely could not. Iodine content I guess.
You can use salt. But do not use sea salt, or iodized salt. Some people say sea salt is ok, but Peter Greene says anything from the sea contains iodine..I found I could not use it. It caused as bad a reaction as if I had eaten shellfish. There is such a thing as plain salt. It is sold right next to iodized salt and is called Plain Salt...with a statement usually that this salt does not supply iodide..a necessary ingredient for health. That's ok to use and won't flare your rash. However, your thyroid medications contain iodine...so it will be difficult to limit iodine since you are taking it for your thyroid.

As for the pain, there are products with benzocaine that halt the burning stinging itching of DH.
Look for Bactine spray.
Walgreens Pain Relieving Ointment
Some have used Ora Jel.
Solarcaine.
Anything with benzocaine topical will work.
Ask your pharmacist to help you.
There is a prescription Lidocaine ointment, but it was very expensive and didn't work any better than the over the counter things.
Wet tea bags take the sting out for a while too.
Nothing works for very long...but these things will get you some temporary relief so you can sleep a little and not scratch.
I had DH on my face so the ointment worked best, but bactine spray can be sprayed on your hand and applied to areas you don't want to spray.
I hope you find relief.
Check vitamins for iodine. You may be getting dosed with too much iodine regularly. I had to find vitamins without iodine. It made a world of difference to minimize the iodine.
Even canned goods contain iodine...due to the metals I guess. I had to stop using them...but it was sooooo worth it.
You will need your medication, but you can limit the other doses of iodine and hopefully your rash will calm down.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#18 squirmingitch

 
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Posted 30 May 2012 - 09:44 AM

Raven, you can eat salt. Just make sure it is non-iodized salt. There is some back & forth on the subject of weather sea salt contains iodine with some sources saying no & some saying yes. So when in doubt...... I just get non-iodized salt.

BTW, many celiacs can not tolerate soy. I am one of those. Who knows if we will ever get soy back but that remains to be seen in a challenge way on down the line time wise. personally, I can live without it. I doubt I will even bother to do a challenge of soy.

Sals ---- here are some links:

http://salicylatesen...out/food-guide/

http://everydaywitha..._Food_Chart.pdf

http://www.mysensiti...-free-diet.html

http://www.foodsmatt...s/salintol.html

Some things you can try for the itching. And as everyone is an individual... what works for one may not work for another so you will have to experiment & see what works best for you. My hubs also has dh (yes, really!) & we found out the difference in people as well as the specific way the dh presents & what relieves the itch for each of us. I use orajel & it stops the itch dead! But it's greasy & you don't want to really slather it all over your body or in your hair for lesions in your scalp for obvious reasons. Now, for hubs --- Vanicream works great --- stops the itch! Vanicream does nothing for the itch with me. Go figure. I use it when my rash is on the way out & those little scabs act like sandpaper & irritate especially when clothing touches them. Both hubs & I recently discovered what works for both of us is CVS's copycat of Caladryl (the pink stuff) --- it's labeled Calamine Plus Itch Relief. That, I can put on my scalp & at least my hair doesn't get greasy. It's good too for coating down with before bed & let it dry before putting nightgown on or crawling between the sheets.
Other things to try:
ice packs
vaseline
witch hazel

And see, you've already gotten your dx -- 1 1/2 weeks gluten-free & your arms are clearing up. If it wasn't dh then that wouldn't happen.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#19 Raven815

 
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Posted 30 May 2012 - 10:12 AM

Thanks so much, everyone. I am willing to do ANYTHING to make this rash go away. I already eat pretty healthy since going veggie two years ago, so a lot of this stuff will not be a problem.

Thanks for all of the anti-itch suggestions. I think it's time to send hubby back to the drug store. I have been using anti-itch cream during the day and cortizone cream at night. One thing that has been working very well for me is this body wash I found at Trader Joe's. It is called "Tea Tree Tingle" w/ peppermint, tea tree, and eucalyptus. I wet down a washcloth and then drizzle this on it. I squeeze it to distribute, but leave it pretty wet. I then fold it and stick it in the freezer. OMG, it feels like heaven when I wipe myself down with it. It seems to take the itch away for quite awhile.

Love this forum and love you guys, Laura :)
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#20 jeanzdyn

 
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Posted 30 May 2012 - 11:25 AM

Too much of anything can be a bad idea... I seem to go on 'binges' too, where I eat a lot of one food type and later have bad symptoms.

I have experienced severe itching, but no rash or any visible signs of the itch --except the scratch marks. The only doctor I ever talked to who even believed me was the gastro-enterologist who did my colonscopy. I figured out, about 2 years before my celiac diagnosis, that if I avoided wheat the itching went away. So, the diagnosis of celiac disease was not a complete surprise to me.

Anyway, I am really sorry that your itching is keeping you from getting a good night sleep (I sure know what that is like from the itching.) And I am sorry that the dermatologist you saw is such an asshat.

I hope that you find relief from the itching and that you find other doctors who are not so close-minded as to think they can learn nothing from their patients!

you will find a lot of support and advice from the folks here at the forum, so you have come to the right place.

welcome, from a recently diagnosed 'celiac'
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What is food to one man may be fierce poison to others. —--Lucretius


I miss bread! But I love Kinnikinnick gluten free pizza crust.


Diagnosed celiac disease: November 2011 (biopsy and endoscopy)
other conditions: asthma, arthritis

#21 squirmingitch

 
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Posted 30 May 2012 - 11:25 AM

We are all wishing you a great night of uninterrupted blissful sleep!Posted Image
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#22 ncallier

 
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Posted 30 May 2012 - 12:12 PM

We are all wishing you a great night of uninterrupted blissful sleep!Posted Image


I also wish you a great night's sleep; please wish me one, too. I am in the same boat as you and have been trying to maintain a strictly gluten free diet since the last of Feb. - the first of Mar. My rash wakes me up nightly with horrible itching and pain.

In many ways, it seems that my symptoms have worsened, especially peripheral neuropathy and this rash. I have been unable to find a dr. who would biopsy my rash--gastrointerologist thinks it is DH but won't treat it; endocrinologist thinks it is ezcema but wants a dermatologist to treat; dermatologist has been on maternity leave since April and will be untll October. (OMG!! I was lucky to get to take my 6 weeks of leave that I had saved with each of mine!! Yes, I know; sour grapes!! LOL)

I really don't know what to do or whom to see. I am ready to get well.

I also had drs. who wanted to dismiss my celiac disease because I am overweight. As per my most recent blood tests, my iron levels are okay, but my red blood cells are way low. The endo said this was "puzzling" but offered no advice. He also did not do a vitamin k test and acted as though I had grown horns when I asked if he had and if he would. even though I have broken capillaries over ~ 1/2 of my body. I have been anemic most of my adult life and was even referred to a hemotologist even though the referral got lost and I never got an appt. I do drink a good amount of red wine, which could possibly explain the iron levels being near normal.

Does anyone have advice????

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#23 JaneWhoLovesRain

 
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Posted 30 May 2012 - 12:46 PM

Raven, I'm sorry to read all that you are going through. I'm in a similar boat, trying to get answers but getting nowhere. I had a visit with a very mean dermatologist today, but not quite as mean as yours. :angry:

Your symptoms and history are very suggestive of DH, I don't know why your doctor had to be such a jerk about it.

I can't add any advice to all that has already been given to you other than to say the only thing that gave me any relief was the generic brand of the anti-histamine loratidine (sp?). My rash is just about gone but when it was there it was the worst rash and itching an d prickling I have ever had in my life, unbearable. As some areas slowly cleared up, new spots would emerge, always bilateral.

Hugs to you, Jane
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Gluten free since 2010 when it was suggested that my vertigo/dizzy problems may be from gluten. Tested negative for DH in April of 2012. However I'm not convinced I don't have DH as pictures and description pretty much match what I have.
11/2012 tested positve for 1 of the 2 celiac genes

#24 Raven815

 
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Posted 30 May 2012 - 02:49 PM

Thanks Jane! My heart is full. I don't feel so alone in all of this and that makes a huge difference.

Laura :)
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#25 squirmingitch

 
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Posted 30 May 2012 - 03:07 PM

I also wish you a great night's sleep; please wish me one, too. I am in the same boat as you and have been trying to maintain a strictly gluten free diet since the last of Feb. - the first of Mar. My rash wakes me up nightly with horrible itching and pain.

In many ways, it seems that my symptoms have worsened, especially peripheral neuropathy and this rash. I have been unable to find a dr. who would biopsy my rash--gastrointerologist thinks it is DH but won't treat it; endocrinologist thinks it is ezcema but wants a dermatologist to treat; dermatologist has been on maternity leave since April and will be untll October. (OMG!! I was lucky to get to take my 6 weeks of leave that I had saved with each of mine!! Yes, I know; sour grapes!! LOL)

I really don't know what to do or whom to see. I am ready to get well.

I also had drs. who wanted to dismiss my celiac disease because I am overweight. As per my most recent blood tests, my iron levels are okay, but my red blood cells are way low. The endo said this was "puzzling" but offered no advice. He also did not do a vitamin k test and acted as though I had grown horns when I asked if he had and if he would. even though I have broken capillaries over ~ 1/2 of my body. I have been anemic most of my adult life and was even referred to a hemotologist even though the referral got lost and I never got an appt. I do drink a good amount of red wine, which could possibly explain the iron levels being near normal.

Does anyone have advice????


Why do you want a doctor's dx of your dh? From what I understand, you have been diagnosed with celiac disease. So I don't understand why you feel it necessary to get an official dx of dh.
You have been gluten-free for 2 months now. Even if you found a great derm well versed in dh then a biopsy would likely turn up negative. You need to be consuming gluten for the best chance of a positive biopsy.
If you have celiac disease & an intensely itchy rash that is worst at night then it's pretty much assured it's dh.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#26 cougie23

 
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Posted 31 May 2012 - 04:31 PM

I Would like to say 2 things...First of all...as allways...great advice guys!!!
I don't know where most of us would be with out the experiance of others...so important with this disease!!!
The second thing...as a lot of you have figured out...is there are two types of weight issues with celiacs...both are cuased by malnoutrishion issuess!
Some of us are anourexic looking...but alot of us...(the ones the doctors say can't have it BECAUSE we're overwieght)... are over weight!
Alot of us CAN't lose weight if our life depended on it...( and for SOME...it does!)
Even though we workout...eat healthy...its NOT enough!I use to tell people...I don't eat enough!...I barely ate ate all at times...no appetite...allways bloated...diareha...constepation...throwing up all the time..migrains...itching...severe muscle and joint pain...all from years of undiagnosed Celiacs!But the reason I WAS fat...was because I couldn't absorbe my noutriants...the same reason others are sticklike...only because my body thought it was starving (which it was...)
MY BODY...converted and stored ANYTHING it could...into fat...the old caveman feast or famine mode!some poeples bodies do that...there are alot of malnoutrishened people out there who are fat!a lot of poor people...who can't afford proper food...so there bodys do with what they can...celiacs acts the same way!can't digest it..so we store it!
Also...just for the record...we thoughtI had MS for years...had all the horrible tortorous tests...and all the neuro could say was maybe...maybe not! but I had 97 out of 100 symptoms...awwww ....can you say...GLUTION ATAXIA!!!! :blink: ...soooooo glad I discovered the forum...and the wonderful doc who figured out what was wrong! problem was she diagnosed me...but kinda left it at that...(its comlicated)...everything ELSE I learned from youguys and the celiacs here who have simular problems! THANKYou!!! we are NOT alone! :D :D :D
And for the record...I just got back some blood tests...and found I'm STILL not absorbing right...which has left me severely vitemen D and calcium defieciant...thus the severe joint pain and muscle spazms...not to mention swollen gums..chipping loose teeth...fragile nails and hair...ect!He's got me on vitemen C as well for my imunity for good mesure...along with my usreal muli! :blink: :rolleyes: :lol: :D :P

The reason I brought this up...was because several of you...besides talking rash...mentioned Docs saying you couldn't have Celiac...because you were over wieght!I just wanted to say you CAN...and alot of us DO! Despite of what alot of docs think...it can be a sign of malnoutrishoin(I HATE spelling that word).....and thus a sign of CELIACS! :ph34r: :o :D (allso...besides brainfog...whichis common...alot of us have trouble remembering how to spell!!!LOL!)That and where we put stuff!!!...5 minutes ago!!!LOL! :rolleyes: :P
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Cougie23
Diagnosed 8/3/11
Celiacs/casein sensitive/lactose intolerent

Favorite quotes-
"I know you think you understand what you thought I said,
But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...
you have to throw him in" -(21 yr.old son)

#27 Raven815

 
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Posted 01 June 2012 - 10:42 AM

Hi Cougie,
I love your post. I want to thank you for the great info and for helping me to feel better about what I am going through. Everything you said makes so much sense. I would tend to agree that I have been malnourished for many years. Two years ago I went vegetarian. I started to eat VERY healthy. Most times I will not put anything un healthy in my body. So, I always wondered, why wasn't I feeling "on top of the world"? I've always been super tired and sick feeling no matter how healthy I ate and how much I exercised. I have always had a terrible time losing any weight and I always thought it was because of the meds I was on. The first week I went gluten-free, I kid you not, I lost 6# (I am also doing WW). So, I am trying to look at all of this suffering as a blessing in disguise. Maybe I can finally get some kind of life back and get slim and healthy. I truly believe this is going to happen. Gluten is bad for ANYONE'S body, so I really don't mind letting it go. I think the trade-off is worth it. Don't you?

Laura :)
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#28 cougie23

 
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Posted 01 June 2012 - 11:26 AM

Hi Cougie,
I love your post. I want to thank you for the great info and for helping me to feel better about what I am going through. Everything you said makes so much sense. I would tend to agree that I have been malnourished for many years. Two years ago I went vegetarian. I started to eat VERY healthy. Most times I will not put anything un healthy in my body. So, I always wondered, why wasn't I feeling "on top of the world"? I've always been super tired and sick feeling no matter how healthy I ate and how much I exercised. I have always had a terrible time losing any weight and I always thought it was because of the meds I was on. The first week I went gluten-free, I kid you not, I lost 6# (I am also doing WW). So, I am trying to look at all of this suffering as a blessing in disguise. Maybe I can finally get some kind of life back and get slim and healthy. I truly believe this is going to happen. Gluten is bad for ANYONE'S body, so I really don't mind letting it go. I think the trade-off is worth it. Don't you?

Laura :)

Absouloutly...glad we could help! :D You hang in there and welcome to the forum! :P :lol: :D
This group is great...full of wonderful suportive people! Wether you have questions...need to rant..(we all have bad days and theres no one better to rant to than a fellow celiac who understands EXACTLY what your going through!)...or just want to talk! we're here for you! :P
If you click on our profile pics...you can go to that persons profile page and leave a message...or if you want a more privite chat...click on "send me a message!"(in case you didn't know)...Its all good!..LOL! :rolleyes: :lol:
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Cougie23
Diagnosed 8/3/11
Celiacs/casein sensitive/lactose intolerent

Favorite quotes-
"I know you think you understand what you thought I said,
But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...
you have to throw him in" -(21 yr.old son)




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