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BeckyB.

Newbie Feeling Desperate. How Long Before I See Improvement?

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I used Flicker b/c I couldn't figure out photo bucket either. Or you can post in this forum for help on loading things from Photobucket to the site
https://www.celiac.com/gluten-free/forum/44-boardforum-technical-help/

 

Epsom salts is not really salt. It is magnesium sulphate containing magnesium, sulfur & oxygen so no iodine. I soak a while & then use a exfoliation cloth on the places. Then when I'm done & dried off,  I will use lotion. Now, there was a time when I had big honking lesions that I could NOT have done that but like I said, you have to try & discard different things at different stages of the game. For me now, the epsom salt soak helps to dry up those pesky ones & for some reason also helps with the itch of ones that are just "bumps".

 

You are most welcome Elaine! :)

 

I am truly hoping you've gotten lucky & the derm will be one of the rare few who are knowledgeable about dh & you can get a dx even if it's by way of response to a gluten free diet --- once in a while someone will get a dx that way.

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Yup, it worked & uh, that looks real familiar. When you go to the derm, try to have left something unscratched (ha-ha) so it can be biopsied. Scratching destroys the IGA pattern in the skin that they look for.

 

I'm thinking the Epsom salts soak will work for you. 

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I am on day 2 of no prednisone and my skin is going crazy....it stings it burns and it itches so so so much!!!  I cannot begin to tell you how uncomfortable I am!  I don't know if I will last until the dermatology appointment.  I am trying the Epsom salts and the ice packs but it isn't beginning to ease this discomfort.  I need to be on the gluten until the appointment which is almost 3 weeks away but if this continues I am not sure I can handle it. This is the most miserable thing I have ever dealt with, I would take childbirth over this because at least there is an end in sight.  I am sorry this whole post is one big rant because I am frustrated and anxious that this will never end.  I am 50 yrs old and have been healthy my whole life, I can count on my hands how many times I have been to the doctors in the past 5 years (excluding for this)  I hardly ever even get a cold. I have had a few rashes over the years but they have always resolved themselves or responded to creams so this whole rash (DH?) has completely blindsided me.   

 

Please tell me this flare is from stopping the prednisone and that it will settle in a day or two, I need some hope here.  3 weeks of this is overwhelming to even contemplate!!

 

Thanks for listening.....

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This flare is from stopping the prednisone. This flare IS from stopping the prednisone! THIS FLARE IS FROM STOPPING THE PREDNISONE.

But I can't tell you it will resolve in a day or two. I'm sorry. I have to be honest with you & I'm never going to pull any punches with you. I know you're suffering. Been there, done that!!!!! I know exactly what it feels like. Each of us is different & there is no rule book for how long it will take for the prednisone flare to calm.

I can also tell you that even after you're off the prednisone flare; things might not get that much better. DH is living hell. Period, the end. Been there, done that. I don't want to depress you but I have to be honest. You have to know what you may be facing in terms of severity. And I KNOW how uncomfortable you are.

From everything you've said it is MHO you have dh & I don't have any doubts about it. 

 

Personally, I sit here & wonder why you insist on waiting to see the derm when it's 99% sure that even if the derm does a proper dh biopsy it will be false negative b/c of the prednisone usage. Maybe I wonder this b/c I have been down the road you are about to embark on with going gluten-free & waiting for the antibodies to get out of your skin while all you want to do is take a fillet knife & cut your skin off your body so it doesn't drive you insane anymore. And I know that for 3 weeks you will be adding more antibodies under your skin. And I've seen so many like you who hold out hope of a dx which you will most likely never receive. I've seen them go down the road you are only be disappointed in the end not having a dx & all the time wasted when they could have been on a gluten-free diet already.

 

CAN tell you that you won't always feel like this. It WILL get better. IT WILL. I am living proof of that. There is light at the end of the tunnel. My tunnel has been long but most of my body has passed out of the tunnel & into the light & it's beautiful.

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Go low iodine. Take cold showers & see if that helps. I used probably 100's of bottles of witch hazel. I would lay on the bed & my hubs would pour it on me & spread it all around while the ceiling fan was whirring above me helping to cool the rash. Ice packs. Antihistamines. Wear loose clothing, the looser the better. A shot of vodka? Or two?

 

I was on Dexamethasone which I think is a steroid stronger than prednisone. It made me bounce off the walls & I could not sleep. Every time I tried to quit it; I would have the "punishment" flare. This was before I figured out I had dh. Then when I figured it out I had to very, very, very slowly taper off on the Dex. But I had already made up my mind I was going gluten-free & not trying to get a dh biopsy. I went strict gluten-free. I finally got off the Dex. Then I had to deal with the rash on it's own terms. It was a long & torturous road but I have done it. I still have some rash but it is so, so very mild now. I sleep all night & go hours & hours & hours without an itch. The rash no longer burns. I feel a thousand million times better now. I'm going to go all the way & one day be totally free of this stuff. I know I can do it. I lived through the worst of the worst & I have won. You will too.

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Thank you so much for your support you can't know what it means to me to know I am not alone! I was in tears today when my husband got home from work, he is at a loss as to what to do and feels completely helpless. I thought staying on the gluten until my dr apt would at least give the dermatologist something to see.  I was thinking that he would look at me and say 'yes that is definitely DH' even if my testing wouldn't show that. I am so torn as to going gluten free now or waiting until the appointment is done.  The flaring seems to come in waves, my whole body will be burning and prickling then it will calm for a few hrs and give me some relief then it winds up again.  It is on my shins and calves and my upper thighs and my tummy sort of on both sides and on my chest and my shoulders and on my back.  My neck is also affected.  I have no blisters, it is just and intense itch that when I scratch bleeds right away creating lesions that then continue to itch and bleed when I scratch them.  My shins are the worst, they have almost bubbled up in red lumps that have created a large patch. It is very tender and almost feels like it hurts deep to the bone.  I don't know if this is what DH is but it is really awful!  I am dreading that the rest of my body will end up like my shins (I uploaded the pictures of my shins in an earlier post)  I tried witch hazel last night but it seemed to dry my skin, I used it after an Epsom salt bath.  I have been using an ice pack to calm the burning also.  I am in a quiet time right now, that means my skin is not 'flaring' like it does at times so a bit of relief.  Is this typical of this disease?  I am going to go and try to sleep while it is 'quiet'.  Thankyou for listening...the vodka was a good idea but I had wine instead.

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Hi Becky, I am just wondering how your gluten free diet is going and if the improvement is continuing to progress.  I have been gluten free for 5 or 6 days and so far I cant say that I am any better.  The rash seems to be spreading still but maybe I am not quite as itchy as I was.  I still have times in the day where it is raging but I think (and it could just be wishful thinking.... :blink:) I may have more calm time.  Calm for me means the itch isn't raging, it is at least bearable.  I find my skin is ultra sensitive to any sort of abrasive material and I include my husbands hairy legs in this lol....it is very uncomfortable having skin on skin or certain fabrics against my skin.  I wear a lot of yoga pants, I find these much more comfortable than jeans.  Anyway I just wanted to check in and see how things were going for you.

 

Take care

Elaine

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Well- last week by Weds I could see a HUGE improvement. I had no visible rash on my arms (still the phantom itching, but it was absolutely tolerable), the lesions on my legs were in the process of healing, the red underlying rash was so much less angry. I was actually able to say that I was definitely, definitely seeing the rewards of being gluten free after four weeks. 

 

Then, Thurs night I was at an event and without thinking I took communion. Straight from a loaf of bread. This is so a part of my life I just didn't consider not taking it until the bread was already swallowed. That night I had definite, immediate GI issues. Since then I do feel like I am back to square one almost. The flare on my legs is horrible, new lesions, up all night. Rash has returned on both arms (although not as bad). I would say the lesions don't seem as large around as they were before but they itch every bit as bad. 

 

This was with one bite of bread :(  Now I am sorting out what in the world I will do about communion. I have options (taking my own bread, ordering gluten-free wafers to use when others use bread, etc)... but there is something beautiful about partaking with the entire body. I am just sorting this out spiritually and trying to figure out where the Lord is leading me in this. 

 

Every day I am hoping to see all that improvement return. But I haven't yet. I certainly hope this doesn't set my clock all the way back- and that it will be another 4 weeks before I can breathe a sigh of relief. I will say that, since I am still waiting to get in with a dermatologist, I have found myself thankful for this inadvertent gluten "challenge" and I know that I know that I know I am dealing with DH here. 

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Hi Becky, thank you for your quick response.  I am not sure if you have looked back at this thread since you first started it but I posted some pics of my legs.  It is on my arms also and my tummy and my back etc.  I am wondering if the rash looks at all similar to yours?  I ate 3 candies at the mechanics today and I am worried now because I don't know what is in the, not that I had seen much improvement yet but that may negate my last 6 days.  I didn't think about it when I took them, I am still getting my head around doing this.  I am sorry to hear of your relapse backward.  The upside of it is that you do know that it is gluten that is causing your rash.  I hope it doesn't take 4 weeks to see the healing again but at least you know that it will be coming at some point if you stick to the GFD.  I am sorry to hear of your dilemma involving communion at Mass.  I hope you find a compromise that works and doesn't compromise your health. 

 

My apt at the dermatologist is in 2 weeks but I am not sure at this point what he will do for me as I had prednisone recently and now I am going gluten free in the hopes of seeing some improvement.

 

Anyway stay strong and stay off the 'G'!!  

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I got glutened about a week into my gluten-free diet (enough that I had GI issues)... and still noticed improvement after about four weeks. Some people have reported not noticing improvement for MUCH longer, but I think it has a lot to do with how quickly you can get every drop of gluten from your diet, as well as how long the disease/rash has run rampant without diagnosis.

 

I have been following the thread but missed the ones about and with the pics while traveling to and from Texas recently! I just looked back and YES- that is very very very much like my rash! I am surprised because I haven't seen a lot of other pics with the underlying red rash along with the lesions, and had wondered before the improvement/relapse if I really WAS on the right track. My legs very much have large, angry, red areas that are wildly itchy/burning (almost all of my skin itches in some way), and then on top of that are the lesions that are round and deep like yours. 

 

My arms have some lesions (mainly on the elbows) but I also get large patches on my bicep area that is just the red angry looking rash but feels a lot more dry than my legs. Not sure what that is about? But it itches like a dickens!

 

ALSO- while looking back for the pics saw the post about epsom salts. Going to try that RIGHT NOW. :D

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one more things- I can barely tolerate "real" pants also. I spend most all of my time in yogo pants around the house. When I wear jeans, anywhere that is at all constrictive gets insanely itchy and will often have a break out. So you aren't alone in that either! I can't stand to wear socks that go over my ankles, and even then I take them off asap (and i usually always have socks on!)

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You just have to train yourself not to put anything in your mouth that you haven't read a label for. I know, there were times when I came a hair's breadth from grabbing a candy out of the bowl at the bank & such as that but I thankfully managed to catch myself before I actually did the deed.

Becky, I too hope you can find a way to feel comfortable at mass without glutening yourself. 

 

Elaine, try going low iodine if you haven't already. And it never hurts to go back over the Newbie 101 especially in regards to cross contamination issues in the home. I don't know if you are doing a mixed household or a gluten-free household but reviewing the rules for a mixed household certainly won't hurt if that is what you have.

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

And I want to say to both of you that eating out is like playing Russian Roulette unless you find a totally gluten free place to dine. DH is so sensitive to the tiniest amount of gluten!!!!! To me, it just isn't worth taking the chance.

 

Always, always carry food with you. Fresh fruit, or fruit bars, a hard boiled egg, trial mix --- totables. 

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one more things- I can barely tolerate "real" pants also. I spend most all of my time in yogo pants around the house. When I wear jeans, anywhere that is at all constrictive gets insanely itchy and will often have a break out. So you aren't alone in that either! I can't stand to wear socks that go over my ankles, and even then I take them off asap (and i usually always have socks on!)

This is so typical!!!! Absolutely true!!! The seams of jeans, where they wrinkle when you sit where your leg joins your torso, where the snap is. I'll have to try yoga pants -- I don't presently have any. Mostly I wear very light weight sweat pants with drawstring & preferably at the hips. I am so glad spring is coming & I can go back to shorts & sleeveless tops & flip flops. Socks make me break out. Tennis shoes aggravate the tops of my feet & where they hit at the upper heal. No way can I wear a bra!!!! Pressure points are where the dh will get you when you wear anything remotely tight & bras are one of those things.

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I hate wearing the bra, I live in a onsie (pronounced wonzee) pajama when I am at home...not bra no undies just the onsie with a trap door on the bum area to facilitate going to the toilet :rolleyes:  I wear sports bras with no wires in them or lace (lace is scratchy!!).  Where I live it is cold here right now so I have to wear boots but they drive me crazy when I am driving as my shins warm up then the itch starts going crazy.  I get to a red light and have to scratch...so horrible. I am really hoping that my rash is like Beckys and that I see an improvement after a month or so, I have only had it since September, it has not been ongoing for years, fingers are crossed and double crossed....... 

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This is so typical!!!! Absolutely true!!! The seams of jeans, where they wrinkle when you sit where your leg joins your torso, where the snap is. I'll have to try yoga pants -- I don't presently have any. Mostly I wear very light weight sweat pants with drawstring & preferably at the hips. I am so glad spring is coming & I can go back to shorts & sleeveless tops & flip flops. Socks make me break out. Tennis shoes aggravate the tops of my feet & where they hit at the upper heal. No way can I wear a bra!!!! Pressure points are where the dh will get you when you wear anything remotely tight & bras are one of those things.

 

I've also got a few pairs of lightweight sweats that I wear a lot. And last summer- when things all flared... I learned the magic of the maxi skirt. Long, cotton joy... nothing touching my legs anywhere, and they go to the ankle so no one had to see the horror hiding beneath ;) I wore them until I absolutely could not stand the cold anymore and have them on standby for any day that happens along over 50 degrees now!!! 

 

Curious- I had to stop wearing a necklace I have been wearing for over four years. I really don't think it's the actual metal... I think it was just the annoyance of the chain/pendant moving around on my skin. Anyone else have this experience???

 

And thank you for your thoughts regarding communion. I am not Catholic so it's technically  not mass. I have found a recipe for gluten free communion bread that I'm going to try. Thankfully, I am in a position that I can perhaps control the kind of bread that we use, at least for this current event (ongoing weekly meeings for the next month or so).  Church is another story but I will cross that bridge at another time! It is the only gluten sacrifice that has "hurt" in any significant way. I miss some of the other things occasionally, but this is the one thing that I have actually paused on. I know that I have to have an alternative, and my heart is beginning to rest in that finally.

 

Means the world to be able to talk to people who REALLY REALLY understand. It is exhausting explaining the situation to people over and over and over again. Even for those who may be familiar with celiac, almost none have heard of associated DH. 

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Becky I am right there with you on the necklace!  I had to stop wearing mine also...I thought I had maybe developed an allergy to the metal so I have stopped wearing it.  We seem to have the same issues for sure.  I also find that when I get out of the shower or bath I have to put my hair up because the weight of wet hair on my neck makes it itch. 

 

I agree with you about being able to come to this forum to vent, unless you have this disease it is hard for others to understand how it feels. 

 

I am off to watch a movie then bed....keep me informed as to your progress and I will do the same.

 

Sqirmingitch thank you for all of your information and input you are a godsend!

 

Elaine

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Oh no, I couldn't possibly wear a necklace nor a bracelet & certainly not an anklet! Maxi skirt...... we used to call them granny skirts remember? :P I've thought of that but haven't found any. 

I am fortunate in that I live in north Florida so our winters are what you would call mild. Mild to you, cold to me as I come from way down south in Fl. Last winter I had so much rash on my feet & ankles that I had to wear Dearfoams slippers whenever I went out in public. I could not tolerate any kind of shoes or boots whatsoever. The lesions, blisters & (ugh!) oozing was just horrendous! Thankfully, the ones I have look somewhat like shoes --- fake suede with shearling accents (& lining) but still, it was embarrassing. The saving grace is the Dearfoams are washable & they got washed a lot! I know exactly what you mean Elaine about your shins starting up when wearing boots or even socks. Wonsies..... wow, I haven't seen any of those in years & years. I guess they sell them in Canada. I spend all my time (except winter) in short sleeve nightshirts. It's a good thing we are on acreage otherwise my neighbors would see things they might not want to when I take the dog out! :lol:  :lol:  :lol: The only time I "get dressed" is when I go down to the mailbox. I could not bear even a sports bra. The rash is in the crease under my breasts (sometimes) & would surely flare with any elastic in that area.

 

Both my hubs & I have noticed a propensity for the rash to "attack" places where you have been compromised ie: moles, my hysterectomy scar or any scar you have & such as that. The darn stuff goes right along that hysterectomy scar. I think the antibodies get to attacking anything they perceive as an intruder.

 

Like you gals, I too find it comforting to be able to talk with others who have the same thing.  People just can't believe something you eat can do this to you. I will say though that I have learned to just show people the rash when they give me that doubting look like they think I don't know what I'm talking about. I'll tell you; they get one look at that & they become believers real fast. I am not ashamed of what this rash has done to me. Just like the wrinkles & the scars, it tells the story of my life & I feel that if people see this then maybe one day they will have a friend or family member who has it too & they will be able to point them in the right direction before that person gets so far down the road they are at the point of no return. Awareness. It's good to let people know.

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I don't have anything that oozes at all, my skin just get incredibly itchy, so much so that I cant help myself and have to scratch and as soon as I scratch the whole area comes up in those awful red bumps that then start to bleed.  If I don't scratch it just continues to itch burn and prickle.  I don't know what would happen if I resisted the urge to scratch.  Would the bumps come anyway?  After I scratch so much that it causes scabs then the scabs continually get scratched off again and again because of the intense itch.  They then get bigger and deeper.  I am not sure if this is the experience of everybody but my entire body seems to be covered in scabs ranging in size from pin prick sized to scabs several mm's in diameter.  Some of the areas are also accompanied by the underlying red raised areas that look blistery but don't actually contain any fluid. The whole thing is a complete mess.  I am doing the gluten free thing but no change so far. 
 
Becky said


Well- last week by Weds I could see a HUGE improvement. I had no visible rash on my arms (still the phantom itching, but it was absolutely tolerable), the lesions on my legs were in the process of healing, the red underlying rash was so much less angry. I was actually able to say that I was definitely, definitely seeing the rewards of being gluten free after four weeks

 

I am hoping that the itch goes away as well as the lesions, given my choice of having the ugly rash or the uncomfortable itch, I would choose the ugly rash any day. And as far as people seeing it I am frankly getting to the point where I could care less what they think, if they think I have leprosy or the plague I just figure....whatever!!!

 

speaking of itch...I am off to have an Epsom salt bath then moisturize my skin...on top of the red blistery itch burn prickle scabby mess, my skin is also as dry as old papyrus where the rash it, a bit like an old Egyptian mummy!  I have had to say goodbye and take care until we meet again, Old Friend Vanity  :wacko:

 

 

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Hi all...new here.  This line of information has answered most of my questions.  Short history, hand the "rash" for nearly 2 years before a dermatologist knew what he was looking at, ran the test and biopsy.  So at least then (last November) i had a diagnosis and some direction...but my mind needed several weeks to accept it all...sort of a grieving process I guess.  Wasn't sold until December when I'd been on the gluten free diet for about for about 3 weeks and slipped and eat pizza at lunch...by the time I got home I had a major outbreak in progress.  Since then trying real hard to keep faithful to the diet.  Now at about 3 months, I was wondering about the occasional blister that pops up.  Rack my brain to try and figure out if I somehow ate something.  But it appears I'm still in the time period where occasional blisters (not as itchy, and heal quicker) are "normal".  I'll continue wandering around this forum to see if I can fine answers to a few other issues...like hope that my joint pain will eventually get better, etc.

 

I do have one specific question...did any of you guys notice that you'd get severe joint pain (generally, for me one joint, like a wrist) followed a day or two later by a fresh out break of numerous blisters around that joint??

 

Thanks,

Ted

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Ted,

I am extremely curious to see if any of the more experienced on the boards have had this same issue. I have also noticed joint pain that appears to be associated with an outbreak- but wasn't sure if it was just in my head or not and so I never mentioned it.... Wondering now if it COULD actually be related!

 

Becky

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Hi Ted & welcome to the board!

I had horrid pain & not just in my joints. I was getting epidurals in my spine to be able to function. Since going gluten free I have continued to get better & better & better & haven't needed an epidural. This is not an uncommon story for celiacs. Celiac disease affects literally every cell in your body. I would lay odds that your joint pain will virtually disappear in time. 

 

As to your specific question ~~~ yes, I have had that but I will state that it didn't happen to me every time I had joint pain. Sometimes it would, sometimes it wouldn't but it did happen frequently enough for me to wonder just as you are doing. I haven't seen any med studies or references though to that happening however there has been precious little research in the dh arena especially in regards to something like blisters appearing where joint pain is.

 

I'm very glad to hear you are over the grieving process & are now taking the diet seriously. Before I forget, since you were fortunate enough to find a derm who recognized dh; would you mind posting that doctors name & location in this thread please? Such information can prove invaluable for someone else looking for a derm who knows what they are doing. Here's a link to the thread & if you would put "dermatologist & dh" in the title of the thread that would flag it for those looking.

https://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/

 

Finally, I would like to say that your experience is exactly why I keep telling people with dh to be pristine in our diet. Unless one gets a full on glutening like you did from eating the pizza, we can't really tell when we get minute amounts of gluten from say a slowly occurring cumulation of cross contamination. Most of us do not have the gut issues to alert us & we DO have flares of the rash even when we get zero gluten. We don't need to be racking our brains & second guessing ourselves as to where we may have gotten cc'd. 

 

If you don't find your answers elsewhere on the board Ted, just post a question in the most likely forum or come back here & ask. if we can't answer. we'll direct you to the right place or call in troops to help answer.

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Thanks for the input and support.  I will go to the link and post the Doc info.  The Pizza incedent was an eye opener for two reasons...one, just the speed and intensity of onset of blisters after eating it, but second was the automatic response I had to someone coming up and saying, "hey, want some pizza?"  Without thinking I said yes and ate a piece before it hit me what I was doing.  Had a second "close call", where I sat down at a resturant and without thinking ordered a beer (my past normal way to start a dinner out)...caught myself that time before I drank any.

 

Again, Thanks.

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YVW Ted! :)

 

My poor hubs keeps having dreams where someone offers him something or we're somewhere & food is on platters & he just picks it up & takes a bite & then realizes he just glutened himself. I've only had maybe 2 of those type of dreams. But it is hard to break a habit of not worrying about what you put in your mouth ~~~ we've lived our entire lives eating anything we wanted with no restrictions. 

 

So this is interesting that 3 of us have had the blisters or lesions occur where joint pain is. It seems quite logical that such would be the case, after all they are both autoimmune flares.

 

Ted, have you tried any of the gluten-free beers yet? Not having been a beer connoisseur, I find them quite tolerable & they taste like beer to me. We have very few choices in this town. The only ones we've found are Redbridge & New Grist. I much prefer the New Grist. Mostly I prefer wine or vodka. :lol:

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