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Help! Please!


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122 replies to this topic

#1 CeliacFashionista

 
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Posted 24 April 2012 - 10:32 PM

I have severe Dh, tried dapsone and it made me break out in pinpoint red dots all over my body. I have been gluten free for 3 months now and it seems like my skin is getting worse. I am on a low iodine diet and it has helped but I'm still breaking out! I'm starting to think is caused by candida. I seemed to get a yeast infection at the same time I my Dh started getting worse. I cut out my kefir(probiotics) because I wanted to go low iodine. I am also getting of a course of prednisone which help get the Dh under control. I have no clue what else to do now and this is really getting me down. I am barley eating anything because it seems everything makes it worse. I have no more money to spend buying ANYTHING because of all the money I've spent trying to treat this. UGH PLEASE HELP ME!!!!!!! This sis driving me nuts I dnt even wanna wake up anymore!
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#2 pricklypear1971

 
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Posted 25 April 2012 - 05:41 AM

I'm sorry you're going through this. DH is awful.

I remember you were headed to a doctor a while ago-was the pred the result of that visit? Did you discuss dapsone? What did the doctor say?

You say the low iodine diet us helping but you're still flaring. That is unfortunately, normal, for quite a few people. Have you thought about salicylates? There are quite a few people on the board right now struggling with sals and they could give you pointers. From my observation, most people have major triggers other than gluten - iodine, sals, SPECIFIC foods (corn, quinoa, soy, etc.) and figuring them out is key to recovery. http://salicylatesensitivity.com/

I was on pred, as well as two shots of steroids and a steroid cream. I can only describe the experience as life altering - I had adrenal issues, blood sugar issues, I was mentally losing it as well as physically. While I understand your desperation (because I was there) please be aware prednisone can be as equally devastating as it is helpful. Also, most people have a rebound effect coming off, and the rash can come back with a vengeance. Please wean yourself off very slowly.

I'm sure you know, but I will repeat it. Dh sufferers seem to be more sensitive to topical gluten, so if you haven't screened your skin care I suggest doing so. Also, DH likes to be moisturized - I like Vanicream or a pure oil like jojoba, and even Vaseline from time to time. Ice packs help me sleep - pack them on to bring down itching.
  • 1
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 dani nero

 
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Posted 25 April 2012 - 08:45 AM

I have severe Dh, tried dapsone and it made me break out in pinpoint red dots all over my body. I have been gluten free for 3 months now and it seems like my skin is getting worse. I am on a low iodine diet and it has helped but I'm still breaking out! I'm starting to think is caused by candida. I seemed to get a yeast infection at the same time I my Dh started getting worse. I cut out my kefir(probiotics) because I wanted to go low iodine. I am also getting of a course of prednisone which help get the Dh under control. I have no clue what else to do now and this is really getting me down. I am barley eating anything because it seems everything makes it worse. I have no more money to spend buying ANYTHING because of all the money I've spent trying to treat this. UGH PLEASE HELP ME!!!!!!! This sis driving me nuts I dnt even wanna wake up anymore!


Can you make a list of everything you've been eating?
I have a feeling that most of the foods in your diet as well as most of your hygiene products might be high on salicylates. It turns out that going all "natural" doesn't suit some of us :-(
I also thought I had a candida problem, until Prickly advised me to read about sals, and my DH was better within days of eliminating sals.
Also have you made sure none of the medications you've been using contain anything you might be reacting to?
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#4 dani nero

 
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Posted 25 April 2012 - 08:48 AM

You might also want to read through this thread http://www.celiac.co...red-frustrated/
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#5 squirmingitch

 
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Posted 25 April 2012 - 09:26 AM

Hi Fashionista, Prickly is right & Dani backs her up & I'm going to third that.
A) I first had steroids when I was misdiagnosed as a rash caused by nerves. When you go off the steroids it comes roaring back & I wan't able to stay off them until I discovered I have dh & Prickly told me about the steroids. I then weaned myself off them very, very slowly.
B) I discovered I had a problem with soy. Got off that.
C) I was low iodine too & the rash just wouldn't stay down. The good people on this forum dissected everything I was doing & it came down to too many sals. I went low sal & almost overnight the dh began rapid improvement.
D) Then I was doing great. And then I had some Quinoa. Uh Oh. Rash came back as well as feeling like I was glutened. No more Quinoa for me! I'm getting better already.

You don't have to spend any more money on this. Wean off the steroids, eat low sals & don't eat corn or Quinoa or Amaranth until down the line a few months when you can trial those foods.

Prickly is right, Vanicream, Vaseline, ice packs. I also find using the coolest water you can stand to bathe with b/c hot water irritates it. I douse my body with Witch hazel after bathing --- it cools it & seems to mellow the itch. Make sure all your topical stuff is gluten-free.
Read the thread Dani posted for you ---- that's my "going crazy" thread where we went through everything I was doing & it came down to high sals.
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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.

 


#6 CeliacFashionista

 
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Posted 25 April 2012 - 12:51 PM

What foods are high in sals? I'm eating almost nothing now. I have only had bananas, almonds, cranberries and I tried eating chicken last nite. THATS IT! I cut out soy a weeks ago...the reason I think its candida is because 1. I seemed to get a yeast infection at the same time my dh started getting worse. 2. When drink kefir w/ raw milk I only got new sores when glutened. I was eating tons of iodine with no reaction but get a reaction to the slightest amount of iodine now. 3. All the foods that exaggerate candida also exaggerate dh. I'm gonna try to get rid of this candida and see if anything changes. If not I will try the low sals diet.
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#7 CeliacFashionista

 
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Posted 25 April 2012 - 01:01 PM

I also have a white coated tounge and my hair is starting to thin. I use johnsons baby wash and apricot scrub n my face. I use shea butter as a lotion. Also products with zinc oxide seem to help with healing.
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#8 squirmingitch

 
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Posted 25 April 2012 - 02:02 PM

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

http://everydaywitha..._Food_Chart.pdf

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

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

 


#9 cougie23

 
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Posted 25 April 2012 - 03:00 PM

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

http://everydaywitha..._Food_Chart.pdf

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

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

OMG :blink: ....You poor people!
Like celiacs wasn't bad enough!... :o
I was wondering what all this talk about sals was....OMG...I'm sorry I asked!
I don't EVEN want to KNOW if I have these sensitivities!And I scratch myself BLOODY RAW....especially in my sleep! I'm still trying to deal with the celiacs..caisen...semi-soy(I'm still in denial on that one) and don't forget NIGHTSHADES! Ladies...you HAVE my sypmathies! :blink: :D
By the way...anyone ELSE break out in little redpinpricks....My Dr.can't figure it out...and noone HERE has heard of that one...so far! I've had THAT problem for years...even had a thread on it...no luck! It runs on my Dads side of the family...(he is a undiagnosed Celiac in denial!) :rolleyes:
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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)

#10 squirmingitch

 
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Posted 25 April 2012 - 03:09 PM

What foods are high in sals? I'm eating almost nothing now. I have only had bananas, almonds, cranberries and I tried eating chicken last nite. THATS IT! I cut out soy a weeks ago...the reason I think its candida is because 1. I seemed to get a yeast infection at the same time my dh started getting worse. 2. When drink kefir w/ raw milk I only got new sores when glutened. I was eating tons of iodine with no reaction but get a reaction to the slightest amount of iodine now. 3. All the foods that exaggerate candida also exaggerate dh. I'm gonna try to get rid of this candida and see if anything changes. If not I will try the low sals diet.


You are eating Almonds --- high sals, cranberries --- high sals. You could go on the failsafe diet (minus the gluten foods) & eat more things than you are eating now. And it eliminates things that are irritants. Scroll down a little way & you will see a food chart. it also tells you about personal hygiene items & such.
You say you are using shea butter & apricot scrub --- apricot is high sals. I don't know about the shea butter. You didn't say which shea butter & apricot scrub you use --- BRAND? Check them for gluten & sals.

http://www.celiac.co...on-and-johnson/

http://celiacdisease...-In-Shampoo.htm

http://vickie-ewell....roducts-a253425


  • 0

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.

 


#11 pricklypear1971

 
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Posted 25 April 2012 - 03:58 PM

OMG :blink: ....You poor people!
Like celiacs wasn't bad enough!... :o
I was wondering what all this talk about sals was....OMG...I'm sorry I asked!
I don't EVEN want to KNOW if I have these sensitivities!And I scratch myself BLOODY RAW....especially in my sleep! I'm still trying to deal with the celiacs..caisen...semi-soy(I'm still in denial on that one) and don't forget NIGHTSHADES! Ladies...you HAVE my sypmathies! :blink: :D
By the way...anyone ELSE break out in little redpinpricks....My Dr.can't figure it out...and noone HERE has heard of that one...so far! I've had THAT problem for years...even had a thread on it...no luck! It runs on my Dads side of the family...(he is a undiagnosed Celiac in denial!) :rolleyes:


Cougie, do you really want one of us to tell you about your little red pinpricks? Because we'll tell you to start reading the DH forum...and point out things like iodine and sals....:)

And let's not get started on Dads. Yours, mine, and a few others are on a slow boat down DeNile (rashes and all).
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#12 squirmingitch

 
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Posted 25 April 2012 - 04:21 PM

OMG :blink: ....You poor people!
Like celiacs wasn't bad enough!... :o
I was wondering what all this talk about sals was....OMG...I'm sorry I asked!
I don't EVEN want to KNOW if I have these sensitivities!And I scratch myself BLOODY RAW....especially in my sleep! I'm still trying to deal with the celiacs..caisen...semi-soy(I'm still in denial on that one) and don't forget NIGHTSHADES! Ladies...you HAVE my sypmathies! :blink: :D
By the way...anyone ELSE break out in little redpinpricks....My Dr.can't figure it out...and noone HERE has heard of that one...so far! I've had THAT problem for years...even had a thread on it...no luck! It runs on my Dads side of the family...(he is a undiagnosed Celiac in denial!) :rolleyes:


Yup Cougie, you in big trouble now! WE know what those little red pinpricks are. Itching you say? My deah, you came to the right place.Posted Image Welcome to the wonderful world of dh!Posted ImagePosted ImagePosted Image

Ohhhh yeaaaahhhh, dad's & HUSBANDS!!!!! De ribber ob DeNile be a loooong ribber. I'm working on daming up that river in this household but it's going to be a long battle. Well, maybe not so long..... I'm getting help from DH & that's going to make my fight a whole lot easier!



  • 0

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.

 


#13 dani nero

 
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Posted 25 April 2012 - 07:53 PM

What foods are high in sals? I'm eating almost nothing now. I have only had bananas, almonds, cranberries and I tried eating chicken last nite. THATS IT! I cut out soy a weeks ago...the reason I think its candida is because 1. I seemed to get a yeast infection at the same time my dh started getting worse. 2. When drink kefir w/ raw milk I only got new sores when glutened. I was eating tons of iodine with no reaction but get a reaction to the slightest amount of iodine now. 3. All the foods that exaggerate candida also exaggerate dh. I'm gonna try to get rid of this candida and see if anything changes. If not I will try the low sals diet.



Drop the milk (and all dairy), because you've been gluten free for only three months and shouldn't be having dairy/ lactose. You can't digest them anyway.

Your problem might be candida, or it might be sals.. but it also might be both. My suggestion is to do a diet that takes care of both problems to avoid wasting your time. Start from basics. Eat only lettuce, carrots, celery, onion, garlic, sunflower or safflower oil, and all types of unprocessed meat for 7-10 days, and when you start feeling better, start adding back one food every three days.

Your diet seems high on salicylates. Read all the links posted to you by squirming.
Bananas, almonds cranberries and chicken were your food last night only.. I meant can you list everything you've been eating for the past two weeks, not just last night.

Also (silly question) but have you made sure you've decontaminated your house from all possible sourced of gluten to avoid cross-contamination?

Have you been reading around the forum? So much information on the boards for the grabs, but you need to do some reading of your own. When I first found out I had celiac I spent six weeks doing nothing but reading about it.
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#14 dani nero

 
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Posted 25 April 2012 - 08:05 PM

OMG :blink: ....You poor people!
Like celiacs wasn't bad enough!... :o
I was wondering what all this talk about sals was....OMG...I'm sorry I asked!
I don't EVEN want to KNOW if I have these sensitivities!And I scratch myself BLOODY RAW....especially in my sleep! I'm still trying to deal with the celiacs..caisen...semi-soy(I'm still in denial on that one) and don't forget NIGHTSHADES! Ladies...you HAVE my sypmathies! :blink: :D
By the way...anyone ELSE break out in little redpinpricks....My Dr.can't figure it out...and noone HERE has heard of that one...so far! I've had THAT problem for years...even had a thread on it...no luck! It runs on my Dads side of the family...(he is a undiagnosed Celiac in denial!) :rolleyes:


I'm sorry to say Cougie, but the "form" of your DH seems to be the same as mine. I don't get the big watery blisters, I only get little reddish ones.. and if I'm lucky and there's no itch with the blisters they can actually show up for a little over a day then disappear.. unless I itch them, which means they'll scab and scar.

It runs in my whole family, and they all have a NEED to blame it on stress alone, because if they did happen to listen to me it would mean having to giving up their precious food.
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#15 cougie23

 
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Posted 25 April 2012 - 10:25 PM

Yup Cougie, you in big trouble now! WE know what those little red pinpricks are. Itching you say? My deah, you came to the right place.Posted Image Welcome to the wonderful world of dh!Posted ImagePosted ImagePosted Image



:blink:
  • 0
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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