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Dh Flare Again.


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30 replies to this topic

#1 GFreeMO

 
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Posted 24 January 2013 - 01:19 PM

Anyone know anything about DH flaring with coconut milk? It has carrageenan in it amongst a bunch of other stuff. Any ideas? The only other things it could be are Kettle Brand plain chips..not sure if they use iodized salt or not.
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#2 squirmingitch

 
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Posted 24 January 2013 - 05:40 PM

Carrageenan gets me big time --- IODINE my deah. I don't do any almond milk, coconut milk, rice milk etc.... b/c I have not found one that does not contain carageenan or sea salt or some sort of soy & soy I can't handle.
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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.

 


#3 GFreeMO

 
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Posted 24 January 2013 - 05:44 PM

Thanks. I am going to throw out the coconut milk. I guess i'm milk free in all forms for now. Oh well...I'd rather drink apple juice anyway. :)

Squirming, do you ever run a low grade fever with your DH? I've had one for days. I was actually at the gastro yesterday and asked him if I could run a fever with this and he said he was not sure. I had a fever while I was there and have had one all day. This all started with coconut milk a week or so ago.

WTH is carrageenan anyway?
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#4 mushroom

 
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Posted 24 January 2013 - 06:12 PM

WTH is carrageenan anyway?


Any of a group of closely related colloids derived from Irish moss and several other red algae, widely used as a thickening, stabilizing, emulsifying, or suspending agent in industrial, pharmaceutical, and food products.

I first came across it as a kid. When we had colds my mom used to give us Bonnington's Irish Moss which - naturally, now I see - had carageenan in it and I wondered then what it was :D
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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"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

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
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#5 squirmingitch

 
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Posted 24 January 2013 - 07:13 PM

Thanks. I am going to throw out the coconut milk. I guess i'm milk free in all forms for now. Oh well...I'd rather drink apple juice anyway. :)

Squirming, do you ever run a low grade fever with your DH? I've had one for days. I was actually at the gastro yesterday and asked him if I could run a fever with this and he said he was not sure. I had a fever while I was there and have had one all day. This all started with coconut milk a week or so ago.

WTH is carrageenan anyway?


Yes, I have noticed a low grade fever but I don't run for the thermometer every time I begin to flare so I can't say I've kept a log of it per say. But It has happened & I have taken my temp. & it was there but mild. Seems to resolve in a day or two. My feeling is that it's a reasonable assumption that would happen with the antibodies going into full scale warfare.

Shroomie might have a better take in that than I have.

Also, I will say that having as much dh over practically my entire body in this latest flare that when I shower I come out as weak as a newborn kitten. I believe this is due to the skin being our largest nervous system & the shower gets all of it screaming & in a tizzy. I will literally having shaking hands & my entire body trembles for up to 2 hours after the shower. It's extremely disconcerting. It feels like when you've had a bad bout of the flu & in bed for 3 weeks & this is your first foray out exerting any energy.
  • 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.

 


#6 mushroom

 
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Posted 24 January 2013 - 07:24 PM

Do you have a soft rain shower head, Squirmy? And use lukewarm water only. Stay calm!! And get out quick :ph34r: Also, no ho' tubs for you, that's for sure!
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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"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

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
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 squirmingitch

 
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Posted 25 January 2013 - 06:42 AM

Yes, shroomie, it is a soft rain shower head. I use the coolest water I can stand & even turn it off between times ie: wet my hair, turn water off, lather my hair, turn water on to rinse, water off & soap body, water on to rinse.

Just starting yesterday though I began to experience this same feeling when I went into a bout of super itching so fierce all over my body & I had not even been in the shower. It's like the itching all over is setting all the nerves off in my skin all over my body. My hands were quite visibly shaking & I felt a trembling throughout my body.

I can't take much more. I swore I would never go the Dapsone route but that vow is out the window now. I have an appt. with a GI as we have no derms here. The appt. is on Feb. 5th --- the earliest I could get. He also specializes in the liver. I have a fatty liver -- thank you celiac. But I will talk to him about putting me on Dapsone. The problem is that I have twice had an allergic reaction to Sulfamethoxazole; my face & lips became swollen enough to do a plastic surgeon proud --- I had no wrinkles left -- what a great face lift! And my lips got strong needle sensations -- enough to wake me from a sound sleep. I got up to look & OMG! I took Benadryl right away. But I'm terrified I might have an anaphylactic reaction to Dapsone. I will discuss this very thoroughly with the doc & if he thinks I can try it I will ask him for an Epi Pen just in case. Otherwise I will try the Tetracycline + niacinimide treatment. I know, yeast infection. I have (knock wood) never had a yeast infection in my life so maybe I don't know the waters I'm about to step into. I only know that I can't take any more of this.
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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.

 


#8 GFreeMO

 
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Posted 25 January 2013 - 08:26 AM

Thanks Mushroom for posting about the seaweed. :) They should just call it seaweed and no one would eat the junk. I love how they try to make their ingredients sound exotic and tasty. :rolleyes:

Squirming, you and me both. I can't take it much more either. I feel similar when I get out of the shower. I thought that I had MS or Lupus or something. Blood results say otherwise but I get the same way after a shower. I have to rest against the wall and most of the time I end up crying. Last night I was so damn itchy that I scratched my breasts and I actually had to sleep with bandaids on them. My face looks like crap b/c it's on my face. I went to the gastro on Tues and he said that I was super sensitive and to eat nothing prepared. No condiments, no gluten free labeled foods etc. So now I am down to only whole foods, olive oil, salt and pepper and Sierra Mist, Coffee and apple juice - And boy am I kind of pissed about this all. No one seems to take this disease seriously, I don't know if it's because it's not a money maker or what but my gastro more or less said that there was nothing that he could do to help me. I feel kind of lost and like no one cares. Eating should not be this damn difficult.
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#9 zamm0

 
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Posted 25 January 2013 - 09:35 AM

FWIW - I'm trying to wean myself off steroid cream for DH by using ice-packs. It's working well so far - a 10min application seems to stave off the itching for ages.
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#10 squirmingitch

 
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Posted 25 January 2013 - 10:39 AM

Thanks Mushroom for posting about the seaweed. :) They should just call it seaweed and no one would eat the junk. I love how they try to make their ingredients sound exotic and tasty. :rolleyes:

Squirming, you and me both. I can't take it much more either. I feel similar when I get out of the shower. I thought that I had MS or Lupus or something. Blood results say otherwise but I get the same way after a shower. I have to rest against the wall and most of the time I end up crying. Last night I was so damn itchy that I scratched my breasts and I actually had to sleep with bandaids on them. My face looks like crap b/c it's on my face. I went to the gastro on Tues and he said that I was super sensitive and to eat nothing prepared. No condiments, no gluten free labeled foods etc. So now I am down to only whole foods, olive oil, salt and pepper and Sierra Mist, Coffee and apple juice - And boy am I kind of pissed about this all. No one seems to take this disease seriously, I don't know if it's because it's not a money maker or what but my gastro more or less said that there was nothing that he could do to help me. I feel kind of lost and like no one cares. Eating should not be this damn difficult.


MO, I tried that ---- whole foods only & low sal foods for months & months & months & months & months --- I went into the outbreak I'm still in so finally after being in this outbreak for a couple months I said f&%$ it & started eating any whole food I wanted sals or no sals --- I didn't get any worse from it. And eating a few Enjoy Life cookies & Mission tostadas & enjoy life choc. chips once in a while.

ZammO, ice packs only work for me as long as the ice pack is on. And I can't put one on my entire body.
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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.

 


#11 GFreeMO

 
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Posted 25 January 2013 - 01:10 PM

Squirming, I don't know what else to do. I've been to 2 doctors and they basically say that I am getting gluten somewhere. I am scared of Dapsone.
I am so tired of all of this. The Dh, gut pain, headaches, feeling like I am 100 and the cooking..all of it.
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#12 squirmingitch

 
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Posted 25 January 2013 - 03:57 PM

MO, I know. Me too. And if I weren't absolutely, positively sure that I am NOT getting gluten anywhere then I would be thinking that I had gotten cc'd. But this is what this stuff does.
If the docs say you're getting gluten from somewhere then ask them to do a celiac blood panel on you. If it comes up positive they are right ---- negative & they'll shut up.
Like you, the cooking....... it seems the hubs & my life centers each day around what's for breakfast, lunch, dinner. If we want to go anywhere it's all got to be planned around time to be home to cook our next meal which means we don't get much time out at all. We are trying to house hunt & it's damned hard to schedule showings around our cooking & eating. Someone always wants to make the showing around 10 or 11 b/c of their schedule & we have to worry if we will have time to see the place & drive back home. We do take snacks with us but still.......

Watch those band aids ..... they can cause dh places to form. I use them very judiciously these days. Hubs can't have a band aid on him anywhere.
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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.

 


#13 sisterlynr

 
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Posted 25 January 2013 - 05:00 PM

I know you all don't want to try Dapsone but I'm telling you, it has been a mind saver for me! I just received results from labs yesterday and everything checks out okay. I only have one area that is somewhat broken out. My lower back radiating to the sides. They are in the scabbed stage and if I would leave them alone . . . :( I do feel my skin is very dry and creates an itch. Just keeping lots and lots of lotion on it. My skin is still rough from the 9 months of all over body breakout.

BTW, I do run a low grade temperature and even on Dapsone, still do.
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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#14 roomorganizing

 
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Posted 26 January 2013 - 07:28 PM

MO, I know. Me too. And if I weren't absolutely, positively sure that I am NOT getting gluten anywhere then I would be thinking that I had gotten cc'd. But this is what this stuff does.
If the docs say you're getting gluten from somewhere then ask them to do a celiac blood panel on you. If it comes up positive they are right ---- negative & they'll shut up.
Like you, the cooking....... it seems the hubs & my life centers each day around what's for breakfast, lunch, dinner. If we want to go anywhere it's all got to be planned around time to be home to cook our next meal which means we don't get much time out at all. We are trying to house hunt & it's damned hard to schedule showings around our cooking & eating. Someone always wants to make the showing around 10 or 11 b/c of their schedule & we have to worry if we will have time to see the place & drive back home. We do take snacks with us but still.......

Watch those band aids ..... they can cause dh places to form. I use them very judiciously these days. Hubs can't have a band aid on him anywhere.

squirmmy, I've never heard this.....can you tell me a bit more? I've posted a couple of times in the last few days about my daughter having a "dry spot" on the back of her knee a couple weeks ago. She put a bandaid over it to keep from scratching and for her jeans not to rub. Two days later, the whole back of her knee was red and raw and itchy, so I told her to leave the bandaids off and to use antibiotic cream on it. It started to heal, but then she had more blisters appear down her leg. Now they look like large sores that have scabbed over. I'm intrigued by the bandaid thang!
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#15 squirmingitch

 
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Posted 27 January 2013 - 06:14 AM

I don't think it applies to everyone & I don't think it's something that celiacs with dh tend to experience in the main. In my particular case & I know in GFreeMO's case we are both so fired up in our skin right now that ALL our skin is hypersensitive to the max. When that situation happens then just the fact of the band aid being on there can make it react. I have used lots & lots & lots of band aids to cover dh places before with no problem it's just that now in this hyper state my skin can react to anything at all. That's why I was warning MO to be careful especially when we're talking the breast area as she was (& as I have) with very tender skin.
As to my hubs; he has always seemed to get reddened, puffy areas under a band aid if the band aid is left for several days or taken off & reapplied. He can use one for a day or two but that's it. This has been something he's had for years & years & years & it doesn't matter if they're latex free or whatever. It's just particular to my hubs. But we found that when he has a dh flare that sensitivity seems to be heightened.
Likely as not your dd was going to get the rash where the band aid was anyway --- the timing just happened to coincide with the wearing of the band aid.
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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.

 





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