Questions: Skin Biopsy Of Dh

[squirmingitch]

Ohhhhhhhh crap! Oats. We recommend staying away from oats for the first 6 months at least if not the first year. Many, many people get oats back but just have to stay away for a while. Now, having said that, there was a study just recently released -- here is a link:

Open Original Shared Link

 

Both my hubs & myself are fine with oats thank goodness. (We use Bob's Red Mill)

 

NOW, I'm going to say something --- it might not be the oats. The damn rash amy just be doing it's thing & the timing is just coincidental. OK, so lay off oats for at least 6 months hon.

 

Corn should be fine. Dh does not react to corn. You're okay there. Some celiacs have problems with corn especially when they're new but that's GI symptoms & often it's b/c their guts are so torn up & haven't healed yet & corn is hard to digest.

 

Soy is not bad for dh. I had soy problems pre & in the beginning b/c it gave me bloat -- BAD bloat but it has nothing to do with dh. I can do soy now with no problem. Many celiacs do have problems with soy -- GI stuff -- and with many that goes away as their guts heal.

 

I'll have to look up the vitamins I took. They don't have iodine in them so I want to make sure you get ones with no iodine. I'll get on that tomorrow. I'm eastern time & about to crawl in bed.

 

Loose stools could be the cold medicine/codeine. Didn't you say you had some GI issues before going gluten-free?

 

Read the ingredients. It must list wheat. Someone is just labeling their tuna gluten free to catch peoples attention. I don't have any chicken of the Sea here but I seriously doubt one would ever find tuna that is not gluten free. BTW, that tuna is full of iodine hon. Iodine aggravates dh.

 

I'll be back tomorrow afternoon.

[irish11]

okay....i shall listen to all the wise sage squirm has for me:)

 

and i forgot to add.....about the diagnosis thing?  I forgot that the MAIN reason too i want it is because...he has no intention of giving me DAPSONE without it..i know this...

 

from day one he says "well I dont care for dapsone so"....like...so ...what?   YOU aren't suffering bud....can we at least discuss this?

 

i need it desperately, at least for awhile...if for no other reason than infections....ive already gotten really sick....the ones in my scalp are constantly open...THIS IS NOT GOOD.... i need some help here.

 

I have nothing right now.....cept for my cough medicine basically...

 

but to back track 2 weeks ago when i got the stitches out...and he told me the results werent in yet....

 

I asked him "well can i have some dapsone please?   ive been suffering for over a year"

 

and he says "well lets see what the results say first"....major A hole.

 

like....o you mean the ones you did incorrectly on purpose?  this tells me he wont give it to me regardless....

 

he can see just by looking at me at this point...anyone can see i have DH...seriously.

 

Because....if they are all so sure its NOT dh.....THEN WHAT THE HELL IS IT?  yeah, no answer.....cuz its nothing else.

 

Not a one of em would tell me what IT IS....versus...they are sure the middle age hypochondriac caucasian chick doesnt have celiac.

 

i know this is their view.....

 

but anyway....okay another thing....i got 7 days worth of prednisone with my chest thing...

 

and i thought "hmmm, maybe this will help".....so i took ONE PILL only.....went online...and it LOOKS to me like

 

prednisone might make it WORSE? i dunno...looked iffy...so i stopped.....

 

anyone know about that?  i dont actually need it i think at this point...im on my way to clearing my chest....

 

 

but i thought about it.....

 

and i also thought about taking up one of my friends offers to hook up to mexico and get me some dapsone....LOL....SHE OFFERED!

 

hee hee....how else could i do it dang it?

[ravenwoodglass]

Your doctor has your best interests in heart when he is reluctant to give you dapsone. Dapsone is a very toxic med to the liver and celiac can impact liver function so you wouldn't want the two combined. IMHO it would be VERY unwise to do something like going to Mexico for Dapsone. You would need regular monthly blood testing while you were on it to make sure it wasn't destroying your liver and your regular doctor would not be likely to be willing to do that with a med you got from another country.

The best way to rid yourself of DH is the gluten free diet. With the agony you are in you may want to consider going strictly gluten free and healing since you have already spent a year in agony chasing a diagnosis. Limit processed foods, cut out iodized salt for a bit and look for gluten ingredients in your topicals like shampoo and lotions etc. My DH was just as bad as yours but once I got really strict with the diet I stopped getting new lesions unless I got glutened. The antibodies will leave your skin and you will heal with just the diet. For some it can take a long time but for others the healing begins within a couple weeks strictly gluten free. 

Sometimes we just have to take our healing into our own hands and this may be one of those times. 

 

Edit

One last note. If you are getting D it is likely from gluten or from being ill not from the cough medicine. Codine binds folks up rather than giving them D. Unless of course by some odd chance it is not gluten free.

As long as the prednisone is gluten free it won't hurt short term. It does have risks long term though. The only times my DH would heal is when they gave it to me thinking I had poison ivy. It and the diet may be able to 'jump start' your healing as long as you are strictly gluten free. 

[notme]

i don't have any experience with prednisone, but it has an awful reputation with dh:  it will make you feel better for a minute, then the dh comes back with a vengeance.  i defer to squirmy on this one.  i had dh, but (big surprise) every dr i ever asked about it said 'dermatitis' or 'psoriasis' or how about this one:  'pitariousis' <i totally thought the doc made the name up because the flare was in my armpit lololz i was like ok haha now what is it *really*.....

 

never used dapsone either.  i finally got sick of reading ingredients on itch relief ointments and creams (and i have fragrance allergies) that i make my own.  it's petroleum jelly, coconut oil & tea tree oil.  makes you smell like a mushroom, lolz, but that $h!+  works like a charm for me.  i have extra scalp issues and it even works for that.  lolz, and if you get it in your hair, bonus!  coconut oil is good for your hair  (not too much or the vaseline will make it look skeevy) but a little will make it shiny.  i put it on the dry ends of my hair and it helps prevent split ends.

 

hope you get some relief soon.   i think hard before i take an ibuprofen because that used to get those itchies going and i try to avoid iodized salt.  i don't have any active areas anymore, so i eat fish <because i need some iodine and it doesn't seem to bother anything as long as i don't go nuts with it.  keep in mind i am 4 yrs gluten free and many issues, including the dh, have cleared up.  you'll probably want to avoid fish until you're sure it's gone.  i imagine some of those people who have had a worse time with dh will never eat fish again...  

[squirmingitch]

Good suggestions Arlene. Steroids -- prednisone is one -- will make you PAY for having taken them! Sure, you'll feel great as long as you're taking them & the minute they get out of your system BAM! it's payback time in spades!!!!!! There is such a backlash it will take your breath away. 

 

I never did Dapsone. I am allergic to sulfa drugs & it's in the sulfa class. I swore I wouldn't take it even if I could b/c it's such a chancy thing. I will admit there was a point where if I could have gotten it, I would have taken it & not cared if it killed me -- my rash was that horrid. 

 

As nasty as it seems when your scalp is so broken out I found it truly does help to go as long as you possibly can without washing your hair & let that skin get some healing time without you washing the scabs off. I know, I know! It's gross!!!! But it will help.

 

Yep, NSAID's get the dh riled up for some reason. I can do Tylenol w/o it messing with the dh but Tylenol messes with my tummy. In the last 8 months or so I have been able to tolerate Advil but only 1 once in a while.

 

Neither my hubs nor I have been able to add seafood back in yet. We look for the day but it isn't yet. Nor have we added back iodized salt yet. We do eat a lot of dairy & other things that have iodine so I'm not real worried about getting enough of that at this point.

[ravenwoodglass]

Good suggestions Arlene. Steroids -- prednisone is one -- will make you PAY for having taken them! Sure, you'll feel great as long as you're taking them & the minute they get out of your system BAM! it's payback time in spades!!!!!! There is such a backlash it will take your breath away. 

 

 

I don't think that happens to everyone. Prednisone would give me one to two months relief even before I was gluten free. Of course I only did the 10 day decreasing dose it was never given to me as a long term med and it was always a high start and then a taper off until they were gone. It also doesn't look like the OP was prescribed it for the DH but rather for her 'chest thing'. I think in that case she should talk to her doctor about her concerns. 

[squirmingitch]

I was never on Prednisone so your experience with it takes precedence. I was on very strong steroids that did not have tapering doses. One of them was Dexamethasone & I would have to look up the name of the other one. They had devastating consequences when they were withdrawn.

[irish11]

More questions (don't hate me)

 

Well truth be told...I will be away next week...something with mom....and thanks for all your replies:)

 

So i am trying to quick study some of this....yes you are right Raven...it was given with some other stuff for the chest...

but being that I'm more terrified of blisters than pneumonia at this point....and i feel better.....i'm ex-naying that....thanks for the good advice.

 

Okay....so....i guess potato chips are okay....but say...is it better like regular Lays potato chips or baked?  baked seem to have more other stuff on the label...or do you guys mainly go with tortilla chips or doritos or something?  or too much salt....what a learning curve.

 

Does it matter if i find gluten free cheese puffs?  or can i have cheetos...prob not right?  And believe me, i get you with the whole thing of what aggravates DH  versus whats technically gluten free.....so yes thats what i need to know....i cant stand these blisters another second.

 

Back to those for a sec...yeah these scalp ones are a MAJOR B.....gnome sayin?

 

Is this normal?  heres my deal lately....I am getting huge ones sorta on the lower half of scalp next to back...like the bottom half versus the top half....where all the curves are (painful)....and I'll just get rid of them..and then the same exact spots fill up with liquid all over again...like i cant seem to ever get all the liquid out....then it scabs...then it re-liquids (or blisters i guess)....

 

and i cant stand it. i am raw and afraid of the shower....but i still have to do it every day to keep em clean....GAW....help me.

I know a lot of you have been there...but for real this is hell aint it?  And i can't figure if its that....now that i've been off gluten a bit, my body is squishing out all the reserves? OR...if its something i had....or the cough medicine....my head is spinning.

 

now last night....i hope i didnt do a bad....i had some "gluten free" turkey luncheon meat....from Select...I got it from ralphs last week..

 

should i not have that once in a while?  a questionable thing i saw was "caramel color" which i don't even get for a processed turkey slice...lol.

 

I'm almost afraid to take any frozen GFs with me next week....cuz from what im reading....half of that isnt either really gluten-free OR it is...but just not good for DHers...lord.

 

and also sage squirm:)  .....so maybe i SHOULDNT do a shower every day?  i mean the head part?  i was scared to NOT do that...but i get what you are saying...the scabs...the open crap...the PRESSURE of the blister making the head hurt.

I wish these docs would educate themselves already.....I'm ready to go on doctor oz for petes sake and shout from the rooftops till they hear me.

 

o and one last thing (i can think of right now)....what do YOU guys cook your stuff in?  like...they say "o all vegetable oils are fine"

 

but i need to know from DHers..what you guys use.....like for chicken or hamburger or whatever.  yes this is how paranoid i am right now, afraid to make a wrong move.....

 

is the Wesson (soy) bad?  or canola?  or?  i used to use Pam Spray....but prob not now right?  aaaaaahhhhhhh.

 

Trying to figure out a few things before i leave in a few days.....something i cant get out of right now......

 

danka danka as always!

[ravenwoodglass]

I eat plain Lays all the time since I go for stuff with the least ingredients and they only have potatos, salt and oil.

IMHO it would be better to have a supply of frozen gluten-free  dinner stuff than try to eat in a restaurant if you are traveling.

When I went to my DD's wedding I took my toaster, a hot plate and a cooking pot from home, a couple cans of Dinty Moore beef stew, pnut butter, gluten-free bread (Udi's) and lots of fruit, nuts and dried fruit like raisens (SunMaid) and Snyder gluten-free pretzels. I was only gone for two days or I would have taken some frozen dinners also. 

For oils I use olive oil mostly or butter. Since I have problems with soy I use pnut, corn or canola oil on the very rare cases that actually fry something. 

I agree with Squirmy that it won't do any harm to go a couple days without shampooing. Do be sure to check those shampoos and conditioners for gluten ingredients. I had those awful sores in my hairline also and I hated them but thankfully in my case once I was really strict with the diet and got all the wheat products out of my toiletries new lesions stopped appearing fairly quickly. I hope that is the case for you also. 

[ravenwoodglass]

I was never on Prednisone so your experience with it takes precedence. I was on very strong steroids that did not have tapering doses. One of them was Dexamethasone & I would have to look up the name of the other one. They had devastating consequences when they were withdrawn.

I am sorry they had to put you on those. There is a big difference between those and the short term prednisone. I agree those stronger steroids can have some nasty side effects. I do hope your doctor had you taper off them. I have never taken the stronger steroids and hope to never have to. 

[notme]

i shower every other day otherwise i would be an itchy mess.  in fact, in the winter months, i get out of the shower, pat dry and grease up with some stuff called 'aquaphor'  in addition to the tea tree salve for scalp.  i agree - let those little scabbies heal up!!  

 

when we travel, i take a cooler and fill it with stuff i can eat (mostly sandwich stuff and leftovers <this is where my frozen leftover dinners come in handy) and then i bring cereal or whatever for breakfast.  (i usually scout the grocery stores wherever we are visiting and i can usually find things i can eat) my husband is a trucker, so sometimes i go with him.  even at the truck stops, there are way more snack offerings than 4 years ago when i was diagnosed.   i get me a little bag of cape cod plain potato chips or the kettle brand (because i like them) but i have ever eaten lay's plain (salted) and they were fine.

 

i cook in olive oil or canola oil, because i have a soy sensitivity - it just doesn't like me - but vegetable oil (soy) should be fine if you can do soy.  i eat boar's head sandwich meat and have never had a problem with any of their products.  all their stuff is gluten-free (in fact, their ovengold turkey breast is still my go-to sandwich when i can't figure out what's making my guts wonky)  if you're having symptoms and you can't figure out what is causing it, you should do a food journal - write down *everything* you eat and how you are feeling.  i have a 24-48 hr delayed reaction and i couldn't remember what i had eaten the day before yesterday lolz (or yesterday haha).  

[icarumba]

Hello irish, squirm and all. Reading your posts sure brings back those terrible memories!! You'll learn as you go along. One thing that I was very sensitive to when I first went gluten free was iodine. It really will make it flare! So be sure you stay away from that for a while at least. Your body does need iodine however. I never had trouble with Lay's regular chips however. I saw that one of you eats Udi's bread. Have any of you ever tried Canyon Bakehouse products? I live in Colorado so that's how I found out about them. It GREAT stuff, especially their hamburger buns. Oh yea, and that yummy cinnamon raisin!!  They actually taste just like the real thing and is fresh and moist and tasty. All their products are awesome! Google them if you haven't. They will ship to you anywhere. Good luck irish!! Just know that in a year or so you will be SO much better, not only for the rash, but how you feel!  And you will have a lot more experience at it. It is a major learning curve. Good luck!

Steve

[irish11]

Thanks so much guys...I will update in a few days...THANKS AGAIN....

[irish11]

Well I'm here (having a very bad day)....but trying to keep my chin up (well the bottom part of my chin always has bumps ALL over, but the rest of my chin).

 

My outings are over.  And nothing much changed, ha.

 

Thanks for all the help.  Hi Scott.  (good name, it was my brothers).  

 

I don't know quite what to make of this thing.  Is it normal to get WORSE after going gluten free?  So I went off around 1/23...

so a little over a month.

 

So the update if i didn't share is that.....with the "inconclusive" on the skin....and my dermo blank starting me...

 

He gave me  one month of 25 mg.....(child dose)....which i am now out of......and no refills....so kinda, whats the point...

 

i did cheat for a few days with doing 2 (to get 50) just because i saw no improvement....and THEN it actually seemed to be better....but i couldnt do that for more than 3 days....cuz i would run out anyway...this is so half you know what....well i wanted to see.....and thats it...now i cant have anything...im back to benes and aspirin i guess.....i have to function.

 

The only thing i AM doing is staying gluten-free....but maybe i'm doing something wrong....now, after being in my lower scalp for a month, now  it has moved to my upper "head" too...lol....the crown.....i have no idea how to wear my hair to work...i just throw it up all a mess cuz i cant put bobby pins or clips or anything, cuz every spot of my head has a sore now.....i put a little goofy thing in the very front to keep it together...but i look like an idiot.

 

and now the worst part is...my back was sorta doable for about 3 days...and then today again...i was burning all day...never a good sign....and half hour ago i had these HUGE hard blisters...like i used to get last summer being on gluten... and just stretching my skin all out and just hurt.  hurt hurt hurt (i am so sick of it)....

 

well, i have a top on of course..and the upper part kept rubbing on the one....and then i felt wet....great....so i squeezed the rest out....but HUGE amount of liquid and mess.  and just...here we go again....

 

i have my moments of such discouragement....so yesterday...well, im hardly eating anything right now anyway cuz im so scared..

 

but yesterday...i had tuna fish....chicken of the sea...is that BAD?  seriously?  and i had 2 pieces of cheese i think....the rest of the day was fruit and vegetables...and some crappy quinoa for breakfast.....and some dry rice chex.......ha.

 

and its still......my typical day.....day before that...i cooked plain chicken and rice....fruits and veggies....and a gluten free bread i picked up at the store...that was terrible...ha....but i mean...

 

does this get WORSE before it gets better? i never know if its what i ate.....or build up from before....how can you know?

 

ALSO....i did a crazy....i set up a appt with john zone.....may as well...ive already spent any mad money i ever had...its next month.

i wish it was sooner...LOL...will fly in and out....turn around....have to do it......

it is so hard to concentrate on life...and im just wearing down:(

 

oh and one more thing...dont remember where i left off...but NOW my primary DOES think i have celiac based on my labs

(which were not great) ...anemia, not absorbing some other stuff....so he finally sent me to the GI, which i tried to get all last year.....but its too late...

 

i knew...when i went to HER...she said i would have to regluten...and i basically said not on your life...i am absolutely miserable and only close to 2 months under my belt....for a year blister cleanse or whatever this is....i ....cant ....do ...it.  

Thanks for confirming what i was so upset about all last year....that everyone wanted to take too long...and to NO ONE but me, was time of urgency...they could care less....it wasn't this gals fault....it was the primarys and the dermos...and the other docs...

 

but anyway....thats where im at.....hanging on......(((Irish))))

[icarumba]

Hello irish. Yes, it can definitely get worse before it gets better. It's a long awful process unfortunately. It covered my entire scalp also at one time. So painful and embarrassing. Hang in there!! It took 13 months of being strictly gluten-free before I FINALLY got better. It takes a long time for those antibodies to clear from the skin. It will probably be the most miserable year of your life, but know that eventually, you'll feel normal, and your skin will be normal (almost), and you'll go on living your life. It may flare up once in a while after that, but it will be nothing like the initial bout of it. Just be sure that everything you are ingesting is gluten-free!! Everything, including meds. I'm sorry you have to go through this, but we all did. Like I said before, initially iodine can be a real factor also. I had to stop it completely for 5 or 6 months. Good luck, and hang in there!

[squirmingitch]

The only thing wrong with Tuna is the iodine & apparently the iodine is getting you. Ditto what icarumba said. I keep telling people this is a mental battle just as much as a physical battle. You tend to question & doubt yourself at every crook & turn. You constantly wonder if you ate something that cc'd you. The rash will wax & wane & drive you insane. This is exactly why I tell people with dh to NOT EAT OUT unless it's a totally gluten-free restaurant and DO NOT eat anything anyone else has made. That is the ONLY way you will be able to keep your sanity.

 

Keep notes & take your labs & docs notes when you go to see Dr. Zone. Take photos too. Also make sure you tell him how you reacted to the Dapsone.

 

{{{{{{Irish}}}}}

[ravenwoodglass]

Irish sorry you are flaring so badly. I also had lesions in my hair and it is not pleasant to put it mildly. You have likely already done this but have you checked your shampoos etc for gluten ingredients? Gluten can't get through intact skin but when we have DH the skin is hardly intact. It took me a while to realize I needed to change my shampoo and conditioner but once I did it, and being really strict with the diet, my scalp, back and shoulders finally started to improve. 

I hope you get some relief soon. If you do have to go on Dapsone make sure your doctor does pre dosage and regular blood work to make sure the drug isn't impacting your liver. It is a good thing the doctor gave you the lowest dosage to start. So many doctors start meds off at the highest level of a med when a lower dose might help and not be as damaging to the body. Call your doctor and tell them about your experience. You were likely given a short term script to either see if it would help or because you had some blood results (liver panels in particular) that made the doc reluctant to prescribe a higher, longer dose. 

Keeping my fingers crossed for you to start to heal a bit faster. 

[Nolev]

If it makes you feel any better I am 3.5 months gluten free (super strict) and erupting all the time and still super itchy including covered scalp.  It too feels like I'm getting worse rather than better (but I think it is actually bad but not worse - in other words I have spent the last 9 months suffering, so it is all starting to be a blur).

Re: meds: prednisone  - I was on an doff for 5 months - in hindsight big mistake - while it works, it comes back worse and harder every time you get off, no matter how slowly you taper.

I have had some success with Clobex spray (although I understand it also has a major potential for rebound - have not stopped using it yet).  Re: shampoos, I use T-gel and I think it is helping me.  Open Original Shared Link

I also have psoriasis which has never been a big problem for me - but I think the prednisone made it worse - so I have that mixed in with DH; the clobex spray is meant for psoriasis but totally helps control my DH blisters...

While I have not felt better on the Gluten Free diet yet, my blood work has improved meaning I am getting closer to hopefully seeing results on my skin.  Hoping......