Dh Flare Again.

[GFreeMO]

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.

[squirmingitch]

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.

[GFreeMO]

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?

[mushroom]

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

[squirmingitch]

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.

[mushroom]

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

[squirmingitch]

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.

[GFreeMO]

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.

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.

[zamm0]

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.

[squirmingitch]

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.

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.

[GFreeMO]

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.

[squirmingitch]

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.

[sisterlynr]

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.

[roomorganizing]

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!

[squirmingitch]

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.

[GFreeMO]

Last night when I got in bed, DH was going crazy all over my butt cheeks..Now since I had breakfast, black coffee and rice with brown sugar it's going crazy on my shoulder blades. I can't stand this. It is making me so uncomfortable that I can not concentrate on anything.

Squirming, what kind of shampoo do you use? I've been using Suave lotion and shampoo and conditioner but I have DH on my scalp too now.

The gastro was no help at all with this.

Also, when the DH gets going, I get a fever which makes me feel like total crap.

[squirmingitch]

MO, I use Suave Naturals for shampoo & conditioner --- they are gluten free.

I have noticed that when I eat, no matter what I'm eating I seem to get really itchy. I wonder if it has anything to do with leaky gut?

HUGS ((((MO))))

[GFreeMO]

Me too..same thing..Does not matter what I eat. You may be on to something with the leaky gut.

Ah well...I guess I just need to suck it up and deal with it.

I like Suave. It smells great!

[squirmingitch]

I like Suave too. Smells great, works great & you can't beat the price.

I don't know about sucking it up..... it's pretty hard to suck this stuff up.

[pricklypear1971]

Hey there honies,

So sorry to hear you're both having such a bad time.

After lots of reflection I figured out any sort of virus, illness would trigger DH in me (but my new flares were so much less than my old ones it was hard to figure it out). Quite frankly, it would trigger it more than iodine after 6-8 months gluten-free.

Anyway, one thing that helps dampen my AI symptoms is antihistimines. So, have either of you tried the different classes of antihistimines (Claritin being in one class, Alegra in another I believe). Check here for common OTC/classes: Open Original Shared Link

If I am in an AI attack I have no qualms using 1/2 dose Children's Claritin every or every other day. It calms my AI reaction down.

That said, I'd try dapsone if I had DH like the two of you. Some people seem to take much longer to calm it down, and unfortunately it looks like y'all are in that category. I'm so sorry, I know it's miserable.

[squirmingitch]

I have some Cyproheptadine 4 mg. tabs left over from pre-dx & I take 1/2 to start then 1/4 2 or 3 x per day & it helps with the itching but it certainly doesn't stop the itch & it does nothing else for the dh. Even though I always take them on a full stomach I find that after 3 days they begin to affect my stomach & I get burning indigestion.

Thanks Prickly for the tip. Will check it out.

[mendylou]

It was interesting to me to hear that someone else has the same issues with bandaids. In the past I would cover dhareas so I couldn't scratch the. As I removed the bandaid I would have the covered area now inflamed. I made my situation worse. My arms seemed to be the most sensitive. I only used bandaids on my legs & arms. Back & buttocks are almost impossible to reach, of course. My legs can tolerate the bandaids better than my arms, but don't leave on too long.

[Itch Be Gone]

I had a horrible, itchy, burning rash over most of my body from early August to early December. A visit to a dermatologist was not at all helpful so, I decided to try a gluten-free diet to see if that might make a difference. Within a week, my rash was virtually gone and remained that way for 6 weeks while I continued with a very strict gluten-free diet. My digestion also improved, I had less joint pain and stiffness, and my nasal congestion improved as well. But, since mid-February, I have been having flare-ups - thankfully, not as bad as before I started on the gluten-free diet but, the rash is still red, raw, itchy, burning, and very uncomfortable - patches on my arms, chest, neck, face, back, and hips. Is this a common occurrence - to have nasty flare-ups like this even when I am on a strict gluten-free diet and even watching my iodine intake? I am starting to feel very discouraged, my nerves are getting a bit frayed, and I am feeling exhausted from having to go through this dreadful burning and itching again (all day and all night). Do I just need to be patient and trust that, over time, things will most likely improve as long as I stay true to this gluten-free diet? Or, am I most likely in for the long haul? I don't even know for sure if the rash is caused by gluten but, boy! It sure improved quickly after I dropped gluten from my diet! And, six whole weeks of being rash-free was total bliss! I even had smooth, soft skin for the first time in a very long time! But, now I am back to this hell and, for the life of me, I don't understand why this rotten, nasty rash has come back to haunt me! Any thoughts, suggestions etc. from any of you fellow sufferers "out there"?! Are flare-ups common? Does it ever get any better?!

[mushroom]

I am not a fellow DH sufferer, but I can tell you from what I have read on here from those who are, DH takes longer to resolve than practically everything else. Just when you think you have it licked, it pops up again and says, Here I am!!! Sorry to have to be the bearer of bad tidings but if you talk to Adalaide or pricklypear, or squirmingitch, they will tell you. I feel for you, I really do, but not having been in your shoes I do not know the full extent of the hell that is DH. Stay the course, beware the iodine, and this, too, shall pass.

[squirmingitch]

Hi Itch Be Gone,

Oh hon, sorry to say that you'll be in for the long haul. It most surely sounds like dh. You see, what happens is that the antibodies get deposited under our skin & it takes a LONG time for them to get out of our skin. Professional sources say 2 years --- some say up to (gasp) 10 years. Until that time our rash can flare even though we are strict gluten-free & low iodine. And because of this, it is imperative for us to make sure we get NO gluten. DH is sensitive to the tiniest amount of gluten. Personally, I don't take any chances at all! You couldn't drag me out to eat --- not unless it was a totally gluten-free restaurant. I don't eat anything that is not certified gluten-free or has not been tested. 99% of all we (hubs & I) eat are whole foods.

Do a lot of reading on here & you will learn much.

Sending you hugs (((()))))