Questions: Skin Biopsy Of Dh

[irish11]

I am going to order this cookbook..thanks...it doesnt cost too much either...I had already bought a few...but this one does look good.

What the heck...would prob accumulate a few anyway...I will also check out the shampoo link thanks....

 

Its like right now....i have this huge blister just under my hairline....driving me nuts....trying to keep my hands off it...lol...not easy...

 

and i'm so tired of taking drugs too....so i dunno...please lord make this time go faster....

 

I can't believe how long they have made me go....so unreal....I never thought it would be prac. Feb....inhumane i say:(

The only GOOD thing was.....I had made some christmas cookies that are NOT gluten free...so enjoying some of those this week...and then waving goodbye to them.....but I would have gladly waved goodbye to them months ago....lol

[irish11]

oh yeah...love the brownie link too...couldnt find them in my area.....but i'll keep looking...i'm keeping the link

[squirmingitch]

You can order the brownies online __ I get mine from Amazon.

 

BTW, you know celiac disease is genetic? Has your mom ever been tested? You know there is such a thing as silent celiac where there are no symptoms?

[irish11]

Yup, I read that in a few books but the first one was that peter green i guess?

But yeah, THATS what gets me.  Not a ONE of these docs (including intelligent doc by the way) asked me my family history, nota one...and i did SO want to share it because...

 

cousin has lupus, bro died of non hodgkins lymphoma, mom is type 1 diabetic with failing kidneys, 2 grandmas with rheumatoid arthritis.

 

call me crazy but.....yeah, i know...this is why i am so UPSET they dont seem to care that every minute counts...this "skin thing" doesn't seem all that important to these MDs.  So unbelievably irresponsible in my opinion, and i just have to play their game (for now)

 

cuz i got news for all them when i'm through with this "part" of the process....heheh.  But i have to play in their very snotty playground for now.

 

In dr. greens book, it said that untreated DH LEADS TO...non hodgkins...how bout that?  No one seems the least bit interested.  Except for you cool people in this support group.  But yeah, dont think for a sec im not appalled by that.  Its enough that I myself know it, but still.  I can tell you my dad died of CHF (heart failure), however...the last 2 decades of his life (starting even b4 the age I am now)

he had this "unexplained" rash on both shins......looks just like pics I've seen...i think from this site or another one....orangey colored all over...and this rash....would come and go in intensity over YEARS...and i remember even asking him about it...and mom...and they both said they had no idea...no docs ever said anything.....and both his shins up to the knee, sometimes beyond was covered with these little teeny tiny spots that were rash like, and real close together...but still , i don believe now it WAS related...no one ever knew what it was.....it would wane and ween.....prob depending on what he was EATING....but no one ever thought to check THAT.

As far as mom...yeah....she should prob be tested, but at this point....i'm just going to have her eat a lot of what I'm having and she is already on a very LIMITED diet.....she has been on dialysis for a year.....so its kinda mute right now for her....and shes nearing 80 so...

 

but this christmas?  the very very few relatives i have left?  i told them all in their cards...so they would be heads up...should they choose to care...ha...i dont need the diagnosis actually to KNOW i have it...fer sher.  I tried my best to just say "celiac"....with varying forms of my skin explanation, which i know NONE of them will get...lolol.

 

my bro was sick for a whole 2 years before being diagnosed by an ER "intern"...how bout that?  yeah i have no faith in most docs, honestly, although i do know good ones are out there....just maybe not in my little corner of the world.

 

and thanks for the tip..i WILL order the brownies on line then...i love me my chocolate...ha.

[irish11]

oops meant to say i DO think dads shins were related to this.....i missed a typo...ha

[squirmingitch]

Your dads shins could have been. I NOW know my mom was undoubtably dh & therefore celiac. She had the rash in her scalp. Yeh, I felt it & saw it & it itched like MAD! It was just like ours!!!! Mom always said it was nerves. Logical considering she had 3 kids & we weren't all angels. (snort) She used to use a toothpick to scratch the living daylights out of it & not mess up her hairdo. THEN, later in life it appeared on her elbows -- both of them. Oh if I had only known. She lived for 15 years eating Tums like they were going out of style. But before I knew mine was dh & it was in my scalp then of course I thought, "Like mother, like daughter" and thought it was nerves just like her. 

Well you've done what you can telling your family members. You can only tell them, you can't take them to the doctor. I told my nephew who is about all that's left in my family so he can be on the lookout for his daughter too. 

 

I'm so sorry about your mom. {{{{{ HUGS}}}}} 

[squirmingitch]

Irish, I was just thinking..... It would help someone somewhere down the line if you would post the name  & location of the dermatologist who DOES know how to do the dh biopsy in the Doctors forum. I see you posted there when you were looking for one. You can just start a new thread saying this guy knows what he's doing as far as dh & where he's located. Maybe someone will be saved a whole lot of grief one day by reading that & going to him.

[irish11]

I may do that after everything..but heres the deal....the guy who DOES know what it is....he's the one who i went to 3 times begging for him to take my skin and he wouldnt actually do it...still not sure why...he doesnt want to get in trouble for ethical reasons for charging too much i guess.....he keeps sending me back now to not bright dermo who spent all year giving me creams....and i have yet to actually know if he CAN do it.  What I'm doing on the 20th is hoping and praying that this time he gets it right...because the last time i went to the other guy...he GAVE me the box kit WITH the vial and everything....telling me to give it to that guy....so i dont get whats going on really...so im afraid to get sued....by being honest and telling everyone whats going on...ha.

Because I can't actually recommend the smart guy if hes not WILLING to do the actual skin biopsy.....send someone else down the rabbit hole to their own dermo that wont know either prob...ha.

 

I still am doubtful, this other guy will even do it right.....its just my last chance is all...because im damaging myself and im so tired of it.

I'll know more in a few weeks i guess...

 

what i DO know is guy one had a lab right next door to his office...would have saved me LOTS of time and trouble...and he wouldnt do it.....with your basic dermo?  Most here prob know that these skin samples get sent to UTAH...im in california...so yeah that makes me feel real good and confident...lol...what a nightmare.  I could have avoided the whole utah deal with guy one.  He really made me mad, by telling me WHAT it was, but not doing anything about it.....everyone is looking for lawsuits...and not taking care of the patient..

 

what a nice brave new world.

 

I almost get the feeling.....no, i DO have the feeling that at this point?  no one DESIRES to get it documented...but me the patient of course WITH the disease.....cuz then they are afraid of THAT....cuz they know what they all have done with me and the game playing...sooooo...yeah.  Its been over a year already that i've had this....cuz i started noticing it dec of 12 jan of 13.

 

o yeah...as far as my mom....ya know?  she had been ANEMIC for like 10 years before her kidneys failed.....they gave her iron pills, procrit, this that.....know what they did?  Sent her for one of those camera pill things....this was like 10 years ago.....they are more common now.....thinking they were going to find something...they found nothing...(mom said they would find nothing).

 

so unexplained anemia?   hmmmm, let me check my books...yup there it is....one of the many celiac symptoms....but if she is, at this point, im not torturing her further at this point, but anyway....no one even SUGGESTED it could be what or what NOT she was eating....yup thats our docs for ya.....

[irish11]

oops meant to say...dec of 13 jan of 14...im tired...lol

[squirmingitch]

I think sending the biopsy to Utah is a good thing. Not every lab has the facilities to properly examine dh biopsies nor the personnel trained for such. As I understand it, the U of Utah has a great celiac center & is very knowledgeable on the subject plus they do a lot of research. I understand Dr. John Zone is in charge of the Derm Dept. there & is well versed in dh.

 

It is VERY telling about your mom & her "unexplained anemia". Tsk, tsk, tsk! Shame on the doctors who did not fully investigate the cause.

 

I know you're in SoCal but I found a support group in central Cal. that appears to have everything on the ball. I wonder if you should contact them & ask if any of their members can point you to a derm who is experienced in dh biopsies?

Open Original Shared Link

Also, here is a link for the SoCal support group -- imho they seem far less organized than the central coast group.

Open Original Shared Link

[irish11]

Thank you for the links!  I will tool around there.....good advice!

 

And thanks for reassurring me about the Utah deal....at first I thought "whaaaaa? the".....

 

as far as moms anemia...yeah....it was SO bad that she had 2 blood transfusions during a few year period...and its like...

it was looked at as "ya know...as people get older" or something.....no no no no....cop out...I always knew that, but what can you do? 

She was even seeing a nephro at the time......and he had no clue....hes the one sent her for a camera pill...

I think it may have even been a lab guy or something...is who calls me at home one morning saying "take her to the hospital NOW'

 

I mean really...if it werent for that call.....so they gave her a blood transfusion sent her home...more iron pills, blah blah...

 

its just like that everywhere i suppose....UNLESS you are a movie star....and have the top people on speed dial....as they beat a path to your door....but for us peons....you better have SOMEONE in your house on top of things......or else you fall through the cracks....no 2 ways about it.  I've heard stories of the VA system right?  By the time they get an appointment 6 months later....they call the house...the guy is dead already right?  its like.....thats how MESSED UP the whole thing is...I dont see it getting much better, but hope springs eternal right?

 

Thanks for all the great links...you have helped me ALOT  (((((Irish hugs))))))))))))

[irish11]

Hey Squirm, or whoever else, hee...

 

my deal is Tuesday....counting down....but of course....

 

I have done shellfish and everything and I AM producing them....just in all the wrong places...LOLOL

 

They are everywhere UNDER my scalp now....and along my neck hairline and all over my cheek and eyebrows...

 

whereas a month or two ago...it was mainly all over my back (a better place for biopsy no?)  of course cuz they took SO DANG LONG.....anyhow...my question is...

 

are they able to get anything if its too close to hair? or hairline?  has anyone had it done on the skin behind the ear?  i get TONS there....yeah, all the dang sensitive places....but i dont know if i exactly want a hole THERE...versus...my back...

 

anyone know if they can get anything though?  or its typicall not done on the face i imagine...crud..

 

im still trying...but what makes me mad is....i have more than ever under the scalp...which is DRIVING ME CRAZY...well they thought i was crazy anyway so touche....but just wonderin...im steppin it up with iodine i swear!

[GF Lover]

Hi Irish...

 

I've had a ton of biopsies and they can take them from anywhere.  They will give a shot first to numb then take the biopsy then a stitch or two if needed.  Get some Aquaphor healing ointment to help with healing.  I've had some large biopsies and even then it just leaves a bit of a pucker on the skin.  Yours will most likely not even leave a noticible mark. The Doc will probably decide which place looks good so.  I've even had a biopsy on my face and you can't tell .  

 

Tuesday will be here soon enough  I'm haven't read the whole thread here but I see Squirmy has been helping you so I won't give the lecture on how to do the biopsy

 

Hang in there...

 

Colleen

[squirmingitch]

I can't say for sure but I think they can take a biopsy from any darn where they want to. They DO have preferred places it seems but I still think they can take it from anywhere. It really is a very small punch they take. I think they like to get the fleshiest area they can & behind the ear would be less fleshy but if that's where they have to do it, that's where they have to do it. They can certainly do it on your neck along your hairline.

Hang in there kiddo! I bet you will produce more by Tuesday. Have some more scallops. Heaven knows you'll pay for them.

 

This is very telling also that the iodine definitely makes you break out --- that's dh for sure.

[squirmingitch]

Cross posted with Colleen.  

[squirmingitch]

Irish, do your darndest to get him to take 2 biopsies just in case 1 gets screwed up. Also try not to scratch the ones you want him to biopsy. The patterning the lab will be looking for is very easily destroyed by scratching (another reason for taking 2 biopsies). I know, I know, it's impossible not to scratch & you'll do it in your sleep automatically. Try putting a thick bandaid or even several bandaids on top of each other over some places so they will be preserved or you could use a really thick gauze bandage. Just try to protect them from being scratched. Gloves on your hands while you sleep?

[irish11]

You guys are awesome:)

 

Colleen...thats IRISH for girl right?  heeheehee, cracking myself up.

 

okay squirmy, I'm trying to hold it together.....but sticking to the plan....I'm at work right now (ssshhhhh, as long as I'm not on facebook)..

 

and I just had a HUGE tuna sandwich....tons of tuna on wheat bread (snicker)..I am so going to pay for this, i want to cry.

but yeah you are so right...i DO want to scratch them, i want all my skin off...just off.....

my biggest problem for real is showers...I think i said...that its like i have my shower on "dribble" pretty much....to try not to break them, but after showers...they are particularly easy to open and bubbly kinda....im thinking of not taking a shower tuesday morning just in case...heh....tricky tricky....i had some behind the other ear today (everything on me IS totally symettrical...its uncanny...whatever i get on one side one day? is on the other side in a day or two..wierd)...

 

and just NOW...i do sense some forming on my upper back (whew)....hoping i can keep them together by tuesday....cuz i really dont want it around my face, all the same...lol.

 

I had some leftover christmas cookies this morning (all purpose flour).....so im smoking my 10 packs of ciggys a day to PROVE i have lung cancer right?  oyvey.  crazy azy.

 

I think MY guy is cheap....(dumb hmo guy)...and i really do know i should be getting two....so i will hope and pray he is amenable to that.....thats what i prefer too...so i can move on...but i think he will only do one...but i will try my best...

 

((((Irish)))))

[irish11]

I hope you guys aren't sick of me yet...but can I ask one more thing?  I can't remember if i asked about this or not, but should I NOT do benadryl?  I've heard conflicting...that it could affect the test, or doesn't....I stopped them today , even though its just a few days before, but really, i couldn't take it much longer than that...without any other pain med being all that useful...

 

but if it doesn matter, I might take one tomorrow....I know i prob shouldnt though....they just really seem to help me quench the itch for a bit....

 

okay thats it...I can't think of anything else...arent you glad?

 

thanks as always, Irish.

[squirmingitch]

Taking Benadryl is fine!!! For me, Benadryl doesn't do a thing but Claritin helps some -- we're all individuals so what works for one may or may not work for another.

 

I wouldn't worry about taking a shower -- that's fine; and don't worry if blisters burst open -- that's okay too. You just don't want to take your fingernails & scratch right? I don't think the wet washcloth running across them will hurt anything just don't scrub really hard. You just don't want to be digging at it.

 

Don't ever worry about asking questions! That's what we're here for and there are no dumb questions.

 

Okay, 2 more days to go. Hang tough!

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

[GF Lover]

Irish,

 

The only one I know of 'happy' to have the blisters flowing.  You're cracking me up  Yes,  Colleen = girl, good catch, unless you really are Irish, then is just common sense ... lol.

 

Good Luck on the biopsies.

 

Colleen

[squirmingitch]

Well gal, you have the most important attribute of all for dealing with this insane rash & that's a fantastic sense of humor! That will take you far. 

[squirmingitch]

Today is the day! Go get 'em!!! 

[irish11]

Hey guys, sorry its been awhile.  I got real sick for a bit on top of everything else.

 

Yeah, a year of running around in tank tops in the middle of winter will do that to you.  I TRIED to take care of all that sooner, and I knew I would get sick eventually....but there ya go.

 

Well...I won't know official I guess until tuesday the 17th....I had the stitches out 2 weeks ago....which was 2 weeks AFTER the biopsy, and he says the results arent in yet....yeah...well.....do y'all think it takes a MONTH?  Well, no matter.

 

Bottom line is...I'm not hopeful, but who knows, could get lucky.  He didn't do it right...at least I got him to do 2 places...

but ya know...he did NOT want to go where most of them are right now....my scalp mainly, cheeks, chin....few still on the back but not as good now...I think my body is so scarred back there, it is finding different routes...unfortunately these scalp ones are PAINFUL, with the hair and all...omg....i'm still not happy but....

 

so anyway....when I went in that day.....he was STILL on this track...swear to gaw...

 

I see NO vials or instruments or anything anywhere...he comes in his shirt and tie as always....and before he came in the room i'm thinking "he STILL is not prepared to do this...STILL"...i was right.

 

I sat in the room for about twenty minutes first...and when he finally comes in....he leans against the counter and says 

 

"SOOO where did we leave off?"  or something....like...this is how much my pain and agony means to these people...him and the gatekeeper chick....

 

so I said "yeah, we're doing biopsies RIGHT?"

 

and he says " let me ask you irish"...no he didnt say irish..lol....

 

"let me ask you.....the only thing to do for this is go off the gluten....so WHY do you need to have this done?"

 

i am not lying....nope.  not.

 

I'm thinking...is this guy FOR REAL....after everything i've been through...

 

I have a doctor standing here asking me WHY i want it diagnosed and documented.....

 

thats like asking a diabetic who BELIEVES they might be diabetic...or a cancer patient...or anything

 

"well just cut out the sugar, why do you need this on the chart?"

 

liked WTF i am SO done with docs around my area, really.

 

I am switching medical groups after this.....i already know im doing that for petes sake.

 

The other thing I was thinking was....(o.....cuz intelligent doc threatened that I might sue, and he's worried what I might do this for)

 

well thats the only thing i can think of at this point.

 

always one step ahead of him....i decided to play the game and ease his fears...i gave him all logic...

 

I said "well BECAUSE doctor, obviously for my future life...i would like it to be on my chart that I am celiac for whatever my future holds. (idiot)...what if i get non hodgkins later?  like my brother?  This is  A PIECE OF THE PUZZLE (moron)"

 

and yes i would still like to sue ALL OF YOU.....no i didnt say that.  Good he isnt psychic.

 

anyhow...he was NOT prepared to do it AGAIN...which is why i kept going back to the other guy begging him to do it, but wouldnt. etc.

 

so he says "well okay...but i have to prepare the room"

 

O M G...yeah, that should have been done already bud...

 

i'm looking up to heaven going "this is on you, is all i can say"....blasphemy I'm sure...lol....

 

so another 20 minutes....

 

and again, i REMIND him...NOT ON THE BLISTER...NEXT TO IT...yeah he doesnt care...

 

according to my mom (who can see my back)....they were both RIGHT ON TOP....yup. no doubt.

 

i did try to encourage him to do the more active areas anyway..which NOW...are behind the ears and scalp and places he is not comfortable doing obviously.

 

I have to tell you something funny...so...he obviously DID remember the BIG ones i had on my back like....

 

4 MONTHS AGO....so he goes to this one area he remembers WHICH IS NOW SCABS....and he says "o this was a good one i want to do that"...and im like "sir, thats now a SCAB..not an active blister"

 

yes people this is what DHers are prob dealing with all over this fine country (GAWD I HOPE NOT)

 

so okay...at this point...i didnt care where he went...just do something....let it come back inconclusive....and nothing i can do about it.

 

so again i'm not hopeful...but hope springs eternal.

 

Despite the misgivings of others here...i DID PAY for Enterolabs......just in case...

 

and i was off the charts gluten intolerant...turned my "stuff" in that same day...ha....

 

I showed it to my mom...she was shocked...they dont think I'm absorbing much...lol...

 

but i know....its not acknowledged blah blah blah....but thats what i was left with....on my own...

 

so still praying for a miracle on tuesday....but ya know.....there ya are.....

 

they did some blood too...he says "those arent back " either.  liar on that i say.  but im stuck...

 

so i have been gluten-free since the 21st and not going back...EVEH.....

 

in the meanwhile...this has all been too much for my body...the new diet...the freezing for a year...the lack of clothes...lol...

 

I was sick the day i went into him....and he didnt even acknowledge WHY that might be....

 

it got worse...i ended up in ER....typical deal....sinus, chest.....tight.....2 bottles of prob non gluten free robitussin (sugar free), decongestants, steamer....getting worse and worse...it was turning into walking pneumonia....so i had to get extra help.

 

But you'll love this....WHILE he's checking me out...ER doc says "you got a rash all over your neck and back"

 

i almost laughed but i had no air....lolol.....Yeah?  ya think?  funny YOU should notice in the 3 minutes you spent with me.

 

I havent gotten ANYONE to notice in over a year....shoulda come HERE sooner....

 

he didnt know what it was of course...so i told him....but hell...AT LEAST HE NOTICEd....

 

i told him "yeah, thats kinda how i ended up like this, but its a long story"....no he was too busy to get into it...

 

but i got me some meds....praise God.

 

I have some update questions for y'all....I'll ask tomorrow (im on a work break)

 

((Irish))))

[squirmingitch]

I am SOOOOOOOOOOOOOOOOOOOOO sorry this all happened to you & yes, sorry to say this is what we hear from people trying to get a dh biopsy. It's insane. It makes no sense. They will NOT listen. They botch it at every crook & turn & WHY IN HELL 90% OF ALL DERMS can NOT learn that not EVERYTHING is biopsied ON it is infuriating!!!!!!!!!!!!!

 

I hope the meds help you get well. 

 

I have zero hope the biopsy was done correctly. I don't know what's up with the length of time it's taking. I wonder if he even sent it in. He sounds like a royal jerk off!!!! I can't even believe he asked why you needed a dx. it boggles the mind. 

 

You know, I started to say just go to the ER & mention dh & I bet you could get biopsied. I think often about telling people to try that.

 

Okay, when you get the chance ask away. 

[irish11]

Hi squirm...yeah wasnt that shocking?  WHY would i want to get diagnosed?  what the hell kinda question is THAT from a doc...

 

After he knows i've been trying for over a year anyway....

 

He did it wrong cuz as i told other doc he does not have my best interest at heart.  he does NOT want it diagnosed, cuz that would make me right and him wrong....and then maybe i could do something with my ongoing pain and agony...and they are all worried now.

So its in their best interest to make me look like an idiot.  nice docs.  went in it for all the right reasons i'm sure, ha.

 

okay so now to my questions.....this is a test..lol...

 

my scalp is ON FIRE...on fire right now...worst day ever for me...

 

I was doing pretty good for a while....mainly rice, some cheese, turkey.....harmless things...some gluten-free frozen waffles...tons of fruit and veggies....cuz im still new....right?

 

but i was getting SO hungry and lacking for taste....and i read that gluten-free OATS would be okay for most celiac...

 

so i bought the red mill gluten-free oats....did half cup only.....was SO good and filling....that was yesterday...

 

today i was a complete mess.....guess i cant tolerate it...double boo....im suffering....and....i cant have oats:(  totally bummed.

 

do others have that?

 

the other thing is...im not sure how i am about corn starch....i feel like if i have something like corn chex.....i seem to have more...

 

would that be right?  there is corn starch in that..as well as half the crackers out there....

 

ive read that Marys gone crackers is good.....but that has soy....is that bad for DH?

 

i guess i have to study more.....at least right now...

 

also....i cant figure out what gluten free vitamins to get....guess im gonna need em...now that ive eliminated everything i used to have.

 

and my stools (heh) have not been really solid for the past few weeks....course that could be the cough medicine with codeine...

but im not sure....

 

ugh this is hard:(

 

ps....i see "gluten-free " tuna......what is the difference between that and chicken of the sea out of the can?

 

course i added some mayo to mine.....and i dont know if that produced any or not.....omg....this ....is ....hard.