Help With Test Results

[squirmingitch]

I saw all the photos. It does look like dh. There are other things that look like that BUT it DOES look like dh. Something I thought of while looking at her photos.... ask her this.... When she gets a place or grouping of places does she find that it starts out maybe very small but when she looks over time the skin in a circle around it has puffed & separated from the lower layers of skin & it looks like there is fluid in between those separated layers? And then it gets bigger & bigger until it's no longer a small place anymore? And if a grouping the individual members kind of grow to join each other & that's when she gets those big patches that look like burns? And sometimes (often) when there is the fluid she can scratch the skin off the top but a couple hours later look & skin has reformed with fluid beneath? This may happen several times.? 

DH separates the layers of skin. Does that make sense? 

 

Good deal on the lady doc ordering those tests. 

 

Yes, brick walls reminiscent of the iron curtain eh? If it weren't so sad & frustrating it would be funny.

[dwhite42]

I saw all the photos. It does look like dh. There are other things that look like that BUT it DOES look like dh. Something I thought of while looking at her photos.... ask her this.... When she gets a place or grouping of places does she find that it starts out maybe very small but when she looks over time the skin in a circle around it has puffed & separated from the lower layers of skin & it looks like there is fluid in between those separated layers? And then it gets bigger & bigger until it's no longer a small place anymore? And if a grouping the individual members kind of grow to join each other & that's when she gets those big patches that look like burns? And sometimes (often) when there is the fluid she can scratch the skin off the top but a couple hours later look & skin has reformed with fluid beneath? This may happen several times.? 

DH separates the layers of skin. Does that make sense? 

 

Good deal on the lady doc ordering those tests. 

 

Yes, brick walls reminiscent of the iron wall eh? If it weren't so sad & frustrating it would be funny.

Thanks for looking at the photos.  It does start of small, the hand and leg pictures are kind of how it has progressed over the last couple of weeks, and boy has it progressed this week!  The elbows have pretty much healed but there are a couple of little bits that are fighting to flare again.  It does group together how you say and then lead to the BIG burn look.  You can sometimes see outside of the area where other little bits are starting to flare and they just join in.  Its very hard to catch it right at the blister stage as its usually knocked or scratched off within seconds!  The fluid does keep returning, I even managed to get a photo this evening of it leaking out (how disgusting am I, becoming a obsessive photographer!)  It dries all yellow sticky and then get scratched and starts again.  Its weird as its never been this bad before and it has progressed so much in the last couple of weeks and that also coincides with her feeling much more unwell.  She is also getting little bits at the top of thighs and now at the back     Did you ever have any sensitivities with your lips?  She was moaning she had a couple of spots on hers earlier and her face started itching (which falls in line more with an allergy). Not just sure if its because she is feeling run down or not.  Sorry I am turning into the Question Queen again!

[squirmingitch]

My lips used to peel a lot. It got to where I couldn't find a single lipstick that didn't irritate them so I quit wearing it & only used Blistex. Still, they would peel but not as bad as when I used lipstick. I just realized about 6 months ago that I never have those lip peeling problems anymore. I hadn't even thought about that so don't know when they stopped peeling. I was too busy dealing with the rash that I wasn't thinking about my lips.

[dwhite42]

My lips used to peel a lot. It got to where I couldn't find a single lipstick that didn't irritate them so I quit wearing it & only used Blistex. Still, they would peel but not as bad as when I used lipstick. I just realized about 6 months ago that I never have those lip peeling problems anymore. I hadn't even thought about that so don't know when they stopped peeling. I was too busy dealing with the rash that I wasn't thinking about my lips.

Thanks for that, feel like I am slowly going insane with all these weird and wonderful things that keep happening 

[squirmingitch]

You are most welcome.

 

For that matter it got to a point where I quit wearing makeup completely. It would irritate my face. My eyes would get puffy & itchy & my whole face itched. I tried different brands of everything it seemed -- at least enough different that I wasn't willing to keep throwing money down the drain. You know how expensive makeup can be! I tried for a while washing it off as soon as I got home but after a time even that didn't work so I just quit wearing it. After I found out I have celiac I got gluten free makeup & don't have any problems wearing it. Although I only put it on for special occasions anymore since I got out of the habit of wearing it.    

[dwhite42]

You are most welcome.

 

For that matter it got to a point where I quit wearing makeup completely. It would irritate my face. My eyes would get puffy & itchy & my whole face itched. I tried different brands of everything it seemed -- at least enough different that I wasn't willing to keep throwing money down the drain. You know how expensive makeup can be! I tried for a while washing it off as soon as I got home but after a time even that didn't work so I just quit wearing it. After I found out I have celiac I got gluten free makeup & don't have any problems wearing it. Although I only put it on for special occasions anymore since I got out of the habit of wearing it.    

   

[dwhite42]

Well things have been a busy week.  My daughter has come out in spots from head to toe, in her hair to on her face with lips being swollen.  Now a lot of the spots look more like hives.  She has been back to the doctors and they have given her some antibiotics for her leg and taken a swab and also she is on antihistamines.  She has had a dreadful couple of days due to the heat over here.  Squirming itch were your spots all the same?  My daughter does seem to have two things going on.  Some look very allergy like and others are more the blistery type.  I have uploaded some more pictures in my photo bucket.  

 

Now by some miracle we have been referred to a dermatologist and we had a call yesterday saying she has a cancellation on early Saturday morning in London and I cannot wait!    

[ravenwoodglass]

So good to hear that she is finally able to see a derm. I hope the appointment gets you some good results. Keeping my fingers crossed on that. 

I also had severe DH like Squirmy and I did have both DH lesions and hives at times. The hives were horribly itchy but they were larger than the DH lesions and didn't get the blisters. They also resolved more quickly and didn't scar. Mine were mostly pressure hives and would show up in a linear fashion like under my waistband, bra bands and where seams from my clothes would put pressure on my skin. 

[dwhite42]

So good to hear that she is finally able to see a derm. I hope the appointment gets you some good results. Keeping my fingers crossed on that. 

I also had severe DH like Squirmy and I did have both DH lesions and hives at times. The hives were horribly itchy but they were larger than the DH lesions and didn't get the blisters. They also resolved more quickly and didn't scar. Mine were mostly pressure hives and would show up in a linear fashion like under my waistband, bra bands and where seams from my clothes would put pressure on my skin. 

 

 

Thanks very much, thats good to hear that there can be both!  Thought I was going extra mad for a minute, can't wait for Saturday but shouldn't get my hopes up too much as things just seem to take soooooooo long! 

[squirmingitch]

HOORAY for a derm appointment!!!!!!! I know that Saturday can't come soon enough! Poor thing. Give her some great big, huge, gentle hugs! The weeping ones look so much like when I had the horrid outbreak all over my torso & scalp. Sort of gave me flashbacks.

You know, it's possible to have allergies AND dh at the same time. It's possible to have a wheat allergy as well as celiac at the same time. It's possible to have any number of skin issues with celiac and dh. I hope the antihistamines help some.

 

I seriously doubt the legs will get infected but the antibiotics won't hurt anything. 

 

My spots were the same --- sort of. I had blisters but there are also ones that are like insect bites. The insect bite ones can itch just as bad but they tend to overall be milder than the blisters in that they heal or come & go faster imho. 

 

Is she getting any sleep?

[dwhite42]

HOORAY for a derm appointment!!!!!!! I know that Saturday can't come soon enough! Poor thing. Give her some great big, huge, gentle hugs! The weeping ones look so much like when I had the horrid outbreak all over my torso & scalp. Sort of gave me flashbacks.

You know, it's possible to have allergies AND dh at the same time. It's possible to have a wheat allergy as well as celiac at the same time. It's possible to have any number of skin issues with celiac and dh. I hope the antihistamines help some.

 

I seriously doubt the legs will get infected but the antibiotics won't hurt anything. 

 

My spots were the same --- sort of. I had blisters but there are also ones that are like insect bites. The insect bite ones can itch just as bad but they tend to overall be milder than the blisters in that they heal or come & go faster imho. 

 

Is she getting any sleep?

 

Thanks Squirming Itch, this week has been an emotional whirlwind, sleep seems like a distant memory, for both of us! I was so worried about her and her lips etc that I have slept in with her for the past two nights, she only wakes me up otherwise needing more medication!   Today has thankfully be cooler and they seem to have reached their peak.  I have not given her any gluten or dairy yesterday and today, as I just want her to calm down a bit.  So far the antibiotics don't seem to have taken any impact but I thought, just in case, until we get someone who knows skin we can go with it.  It is weeping so very bad and she finds it hard to weight bare as it feels really tight.  

 

It's so lovely to hear these things, as I feel practitioners just seem to concentrate one one issue and I am worried that they are just going to go down the allergy route.  Hopefully with a gastro and a derm, we might have a bit more of a fighting chance!  I really don't know what I would have done without this website, everyone has been so supportive, I have reached five pages already with my jabbering!  Roll on Saturday, only two more sleeps !  

[squirmingitch]

When mine were like her weepy legs are I used pure petroleum jelly & slathered it on thick. I KNOW how those feel. HOT! Itchy! BURNING! And PAINFUL! That was the only time I found tight clothing to be a good thing. They were all over my breasts, underarms & belly & I would slather on the vaseline (petroleum jelly) & when I had to go out in public I would wear the tightest t shirt I had b/c at that point anything that rubbed in the least sent me screaming in pain. Matter of fact I hung around the house nekked unless I HAD to go out. Just the act of walking & breathing -- the motion of those things --- made the pain like shards of glass. You might try the vaseline & then wrap fairly tightly, but not so as to cut circulation,  with rolls of gauze in several layers. 

[squirmingitch]

Oh yes, do you know that antibiotics are used to treat dh when dapsone can't be used? Dapsone is itself an antibiotic but if the derm suggests it then PLEASE do your homework before putting her on it. Dapsone is not child's play & many, many people can't tolerate it. It is in the sulfa class & I could not take it if I wanted to as I'm allergic to sulfa. But depending on the antibiotic they've prescribed her, it might just help her dh. 

[dwhite42]

When mine were like her weepy legs are I used pure petroleum jelly & slathered it on thick. I KNOW how those feel. HOT! Itchy! BURNING! And PAINFUL! That was the only time I found tight clothing to be a good thing. They were all over my breasts, underarms & belly & I would slather on the vaseline (petroleum jelly) & when I had to go out in public I would wear the tightest t shirt I had b/c at that point anything that rubbed in the least sent me screaming in pain. Matter of fact I hung around the house nekked unless I HAD to go out. Just the act of walking & breathing -- the motion of those things --- made the pain like shards of glass. You might try the vaseline & then wrap fairly tightly, but not so as to cut circulation,  with rolls of gauze in several layers. 

 

Gosh that sounds so painful.  I will try that.  I just keep thinking, so wonder she has been so miserable recently!

[dwhite42]

Oh yes, do you know that antibiotics are used to treat dh when dapsone can't be used? Dapsone is itself an antibiotic but if the derm suggests it then PLEASE do your homework before putting her on it. Dapsone is not child's play & many, many people can't tolerate it. It is in the sulfa class & I could not take it if I wanted to as I'm allergic to sulfa. But depending on the antibiotic they've prescribed her, it might just help her dh. 

I have read a couple of things about Dapsone and am not overly sure I want to go down that route.  I am hoping that if she stops eating it that it would clear, (that could just be really silly hopeful thinking on my part) but I am also not sure how long that would be either.  Would an antibiotic be better than Dapsone to start on?  What an EVIL thing it is!  I am just preying that this woman is good!  Supposedly she is but you just never know until you get in the door!

[squirmingitch]

There have not been many people on here who tried Dapsone who were able to stay on it. 

I wish there were a way to predict how fast the rash will clear when one begins a gluten-free lifestyle but there just isn't. Every person is an individual & we react individually. I will say that most people who have been on here with dh have had pretty quick results -- a couple to a few months seems to be average. Some of us have a really long row to hoe. I'm not even sure it has anything to do with how long you went undiagnosed. I've read medical reports saying that has an effect but I haven't read any scientifically done studies that back that up. I know NOW that I had celiac as early as 12 or 13 & I was 54 when I figured it out so 42 years undiagnosed more or less. I think Ravenwoodglass is pretty much along the same lines as I before she found out. 

 

Other drugs that may be used include tetracycline, sulfapyridine, and some immunosuppressive drugs. These are less effective than dapsone.

As far as using these "other drugs" for any long term -- that's up to you & your husband to decide for your daughter. Also, celiacs have a tendency to develop allergies & I would hate to see her develop an allergy to antibiotics that may one day be needed to save her life. I say that as someone whose only option for antibiotics are the terramycins b/c I am anaphylactic to penicillin and sulfa is not an option either. 

 

YES! It IS an EVIL thing!!!      

[ravenwoodglass]

As Squirmy said I was also over 40 years before I was diagnosed. Like your daughter I was covered in DH lesions as a child and it was horrible. the doctors told my Mom that I had poison ivy in my bloodstream. Yea right. 

Be careful of Dapsone and if the doctor does prescribe it make sure they have done liver panels before and at least once a month during treatment as it can be very toxic to the liver. 

I got lucky and within a couple weeks gluten free I stopped getting new lesions unless I got glutened. It took quite a while for the lesions I had to heal and it did take a long time for the antibodies to leave my skin. That meant that when I got glutened I would breakout quickly. Now I am about 13 years gluten free and DH is last thing thing to show up and even then I only get a spot or two. I hope your daughter heals quickly like I did but for some resolution of the lesions can take longer. 

[squirmingitch]

I was thinking that you should start keeping a food log & write down anything & everything that passes through your daughters lips, that would include medications both prescription & OTC. This is so you can track what might be giving her additional problems. Also write down any reactions she seems to have -- just take notes of anything that seems odd. It's a lot of work but many times it's the only way to figure out the problem item. It wouldn't be a bad idea either to keep a log of anytime any topical products are changed such as a new laundry detergent or lotion & things like that. 

[nvsmom]

Poison Ivy in the blood stream???  Seriously!?   

 

Good luck with the appointment.

[dwhite42]

As Squirmy said I was also over 40 years before I was diagnosed. Like your daughter I was covered in DH lesions as a child and it was horrible. the doctors told my Mom that I had poison ivy in my bloodstream. Yea right. 

Be careful of Dapsone and if the doctor does prescribe it make sure they have done liver panels before and at least once a month during treatment as it can be very toxic to the liver. 

I got lucky and within a couple weeks gluten free I stopped getting new lesions unless I got glutened. It took quite a while for the lesions I had to heal and it did take a long time for the antibodies to leave my skin. That meant that when I got glutened I would breakout quickly. Now I am about 13 years gluten free and DH is last thing thing to show up and even then I only get a spot or two. I hope your daughter heals quickly like I did but for some resolution of the lesions can take longer. 

Thanks very much.  

[dwhite42]

So good to hear that she is finally able to see a derm. I hope the appointment gets you some good results. Keeping my fingers crossed on that. 

I also had severe DH like Squirmy and I did have both DH lesions and hives at times. The hives were horribly itchy but they were larger than the DH lesions and didn't get the blisters. They also resolved more quickly and didn't scar. Mine were mostly pressure hives and would show up in a linear fashion like under my waistband, bra bands and where seams from my clothes would put pressure on my skin. 

All thanks   

[dwhite42]

Poison Ivy in the blood stream???  Seriously!?   

 

Good luck with the appointment.

Thanks you!    

[squirmingitch]

I'm keeping my fingers crossed that today is a GOOD day with the derm actually knowing their business and you getting some answers & not coming home frustrated.

[dwhite42]

Open Original Shared Link

 

Well I have updated my library with some of the blood tests results that are back (still awaiting vit D and blood screen and also thyroid from the GP).  Just really confused it it all.  Especially the Total bilirubin and CRP results (are they normal??!!).  Also not sure what the difference between IgA Immunoglobulins is and IGA serum.  Any clues?  One IgA level does seem to be on the upper end of normal but still within rage.  

 

We went to see the derm and to be honest I really don't know!.  She was lovely and helpful but again its put down to infected eczema which hasn't been treated properly by the doctor.  She has prescribed all sorts of lotions and potions, some to bath and wash in, fucibet for body and trimovate cream for her face.  I kept pressing about DH.  She said that she wanted it to get under control and then she would look further when things had calmed down a bit.  

 

So instructions are bathing twice a day with lotions and potions and steroid cream also twice a day.  She has also prescribed some antibiotics, different ones to the doctor as we stopped them as they were giving her heart and chest pain and felt she couldn't breath (not good for my blood pressure either!).  We have to wash bedding daily and also towels after each use, along with clothes and has taken a swab.  

 

No school for the week.  Complete rest with with legs up level with sitting.  She also said it looked so bad that she needed to see us again next week.  Really have no idea at the moment whether or not I am totally dreaming this all up and going mad with it all!  Could infected eczema also effect the lips and swelling, I really have no idea!  

[squirmingitch]

nvsmom & others are much better @ interpreting bloods than I am so I will let them weigh in on that. Although her "regular" bloods look normal with the exception of monocytes which are white blood cells are a tiny bit low. What that means - I don't know.

I can say that a full celiac panel is not in those reports.

Does she have any dry places on her lips? Or lesions or rash? I did find these links that talk about swelling of the lips with eczema:

Open Original Shared Link

Open Original Shared Link

 

So from what I'm reading the derm is convinced it's eczema & refuses to consider or rule out anything else. If it's dh she will not be able to get it "under control". I really do NOT understand WHY they REFUSE to do a dh biopsy if ONLY to RULE IT OUT.

 

I went back to your first post on here to review & You said :

"We left the doctors with him saying she needed to do a two week gluten free challenge to notice any effects.  Within 24 hours she had gone from 4-6 toilet stops a day to 2.  However she had severe stomach cramp on gluten free.  Could this be because her gut is not used to working efficiently?"

So when she went gluten free, in 2 days her toilet stops went from 4-6 down to 2. That, plus the "failure to thrive" when she was little & the tingling hands & feet & the muscle cramps & spasms. It's ENOUGH to be very suspect of celiac & that means her rash is suspect of dh.

I STILL contend she needs to have a dh biopsy. If it is done & done right & she turns up negative then she is negative and then you will have ruled that out & can look for other answers.

I just feel like this is wasting time while she is suffering (and you are). And I will also say that i think it's quite possible she has more than one thing going on with her skin so more than 1 biopsy should be done.