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irish11

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About irish11

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  1. Hi Ravenwood.  On april 23 it will be 3 months gluten-free.

     

    Today I was horribly blistered on my back again.  I know its not gluten because I am so tired of it, I'm pretty much doing paleo diet right now.  In other words NOTHING.  no soy, no grains at all, no dairy...nothing....im existing barely on  plain unflavored protein and fruit and veggies, and they still come.  What a horrendous disease this is truly.  just horrendous.  Wishing for some relief....I almost don't believe any will come.  But I keep going.  What else can i do?  I'm 5'8.  When i went gluten-free i was 152 pounds, today i am 133 pounds.

     

    And nothing works.  I've considered not eating at all but I guess that would be anorexic.  I look it anyway pretty much, ha.

     

    Its all i can do to get to work every day...i barely can do it.  I never want to do it I am in so much pain and embarrassment.  But what can I do?  I need the job.  Hopefully someday...one can dream right?


  2. Hi there.

     

    Irish here.  I finally got a real dapsone prescription and have been on it for about a week.

     

    My question is, is it normal for them to be squishing out as much as ever? Seems like they are softer now, not as hard, but continuing....I have been on 100 mg. for about a week.  Maybe too soon?

     

    seems the face ones are better, and the back ones are medium right now...

     

    I just don't know if thats normal or not.  Should it be working by now?

     

    It seems like my whole scalp has them....first left side then right side, then down the middle of my head then left then right, then lower area (where they accumulate alot, which i attribute to having your head up all day and they just accumulate there?)

     

    the scalp ones are my worst thing right now, followed by back.....


  3. 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))))


  4. 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!


  5. 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?


  6. 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.


  7. Monkey girl....

     

    I'm sure you have it....and im new here.....

     

    I feel your pain grrrl..

     

    I am a bit long winded....but you can check out MY odyssey....in the DH area....

     

    Im STILL not diagnosed either...and miserable....and just getting off gluten...im still blistering...but not as much..

     

    its going to be trial and error i think.....it will prob take MONTHS before i even know if its old stuff or new stuff i ate...

     

    its a nightmare...they have NO IDEA about it....and you are not alone.....

     

    docs dont understand it....(for the most part)...I myself am seriously considering setting up an appointment with

     

    Dr. John zone in utah.....I need to talk to the head guy....everyone here is slightly clueless..and ive lost ALL patience....all.

     

    dont know where you live but......are you next to utah?  im not....but i could fly in and out do an overnight and be back...

     

    i have one foot on the plane in my mind...i know my odyssey aint over.

     

    (((irish))))


  8. 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))))


  9. 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.


  10. 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)))))


  11. 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!


  12. 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))))))))))))


  13. 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.....


  14. 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.


  15. 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


  16. Thanks for the hair dye advice.  Yeah, at least YOU understand...all year, when i was trying to tell friends why i couldn't dye my hair...they just did not get it....or didnt want to...or thought i was lying...i dunno...but i could sense like "well why not....what does hair dye have to do with anything?"  well they dont have open burning blisters under the hair...so of course they dont know.  Most of them still dont get the "skin" thing anyway...all anyone knows in my circle is the kind of celiac that gets on tv...the gut symptoms....so there again...i know some of them believe me....some prob not.....it is what it is....like i would suffer this ON PURPOSE...holy cow.  Hopefully in the near future, the public will become more educated on the skin manifestation...that in itself has been so frustrating to me...people just stare at you like "what are you TALKING about?"  or i get this a lot  ....one guy says to me "o the skin thing...at least its not celiac, thats hard i hear"....SCREAM...thats what im saying people it IS celiac....its not advertised that way though..ha.  they think the skin thing means its something less bad...or...you can still have SOME gluten you just have to watch it....thats what they think, they dont get it.

     

    yes Raisenettes my fav...especially at the movies...o goody.....so in time...i can have some again....for a treat:)


  17. also, thanks for the raisins advice too....dang it....I LOVE RAISINS....one of my fav things was raisin bran (giving that up has been hard....but next week i intend to have some....LOL), but thank you for helping me with what things and what not.

     

    I have a cafeteria here at work....and I feel pretty safe getting the "peanut butter and apple slices" thing they have in the fridge...HA.


  18. Thank you once again Squirm:)  for your sage advice!  Sorry I didn't respond for a bit.  I was busy with my other life..ha  ..

    care giver for mom and working full time.....adding THIS stupid thing has been a trip!  But it is what it is.

     

    So thank you for the Cliff notes....cuz at this point, before i study up on all that, I need the condensed version of things...heh.

     

    I didn't know about the egg deal.....hmmm that explains alot.  Also stupid question.....does it make a big difference whether the nuts are salted or lightly salted or?  its hard for me to find non salted ones...course...I honestly don't know if its iodized or not...guess i better research the brands (I used to always get Planters peanuts)...

     

    off food topic I also wanted to ask...on shampoos...I know i can read up on it.....but I have been doing like Prell and Pert this year....I dunno , they both didn't irritate me.....I used to use the "good" stuff.....from Hair product stores...but right away realized those irritate me now.....so do you have an opinion on say....shampoos for use during "breakouts" maybe versus other times?

    I have to tell you...when all this started for me early last year.....I didn't dye my hair for like 7 months...I was afraid to....i was afraid of infection, of burning....I only gave in around christmas cuz i didnt want to look horrible (an old grey hair hag) during the holidays.

    Anyhow i digressed.....

     

    so i did the same thing this week with the food...gave myself like 2 gluten-free days....to pace it out...and then back on....trying to play the numbers before the 20th (so ridiculous what these docs put me through)...and every single day I called for cancellations and miss "gatekeeper" has refused me.....thats alright....I believe in Karma....so there!

    Some day some time..when she least expects it....heheh.

     

    thanks for the sounding board and the great advice.....its really hard for a newcomer to this DH world....to get all the things involved....and I want to be a quick study....for my own benefit right?  ugh.

     

    ((((irish))))))


  19. Thanks Squirming. 

     

    I wanted to ask, since I'm NEW I hope y'all don't think these are stupid.  I ordered several books that just haven't arrived yet so...

     

    For example...on my recent "baked lays" kick....cuz i love potato chips so tryin to take it down a notch....are those bad too?  Cuz it says SOY in there.   And I guess what I'm confused about is, I have read conflicting on the soy deal...

     

    crud, half the products I've already seen on the market labeled gluten-free have soy as well as some of my favs.  Is it a CERTAIN soy?  or just soy is wrapped into the iodized salt type category?

     

    I gave myself two gluten-free days....to just help me live through the pain....b4 glutening again...and I don't know if it has ANYTHING to do with it....but on those gluten-free days....i still had some baked lays AND some cheddar cheese....are both a no no?  Seemed to get blisters nonetheless...but those could just be "residual" blisters...who the heck knows....waiting and waiting is so agonizing for me....

     

    My most PAINFUL blisters are those that form UNDER the scalp...anyone else have THOSE?  omigosh....i dread the shower, dread everything, it all just burns....and yet i have to clean the hair....its just a terror getting up in the morning anymore...looking forward to all that....

     

    if i really wanted to clear out....like starting THE 20TH..ha....whats the QUICKEST way?  if there is one...like no cheese, no anything that can POSSIBLE trigger....?  im thinking like...totally plain white rice, apples, and tuna...well no cuz tuna has iodine right?

     

    like...AAHHHH...okay for my protein i could have eggs....so eggs, rice, apples, oranges...for like the first week...just to quicken this up...or is that NUTS.....nuts are good right?  just no salt?  or low salt?

     

    just while i await my books i guess...who knows if they are even that helpful...


  20. YES....I have to tell you I LOVE fried scallops, hee.  So theres my excuse!  I love fried shrimp too....last chance for that!

     

    So its interesting what you and others have said about iodine....as in iodized salt right?  Because I find that to be correct! 

    I have noticed, if I eat a bunch of stuff WITH SALT, even if its "gluten free"....I still get aggravated and blistered.   Isnt that wierd?

     

    Like, i dont know how to explain it but....for example, they would say prob that like....lays potato chips are okay?  I know that if i have them, i will be aggravated with it. like, blisters will form nonetheless.....so i would experiment with say BAKED lays chips...

     

    wouldn't be as MUCH, but would still get a few....is that wierd?  i even experimented with cheese (my fav thing i dont really want to give up)...but its like THE salt part....i knew if i did have SOME,  maybe not so bad...but if i had a lot, then it would be like i ate gluten.

     

    I mean the skin reaction.  So i have been playing with that a little and noticing that.  So thanks for the advice, i WILL do that few days before.  Also, a few days before each of these appointments I would have either raisin BRAN or WHEATIES for breakfast...something i won't do after this, ha.  Cuz believe me i WOULD notice!  And i also noticed at least for ME...that RYE BREAD was a particual trigger.

     

    I started eating a lot of rye bread few years back, i just started loving it, and i guess THAT helped trip me up!  Cuz rye bread seems to bring it on for me too.  Or even just the way restaurants cook chicken or whatever.  I would notice that when i went OUT to eat...no matter what healthy thing i ordered?  i had way more blisters than when i ate at home.  So everything i am reading here makes sense to me, pans out, and now i get all the things i was doing to irritate it.

     

    and now that i KNOW, makes it all the more torturous! 

     

    as far as the other, yeah...i have so many people want me to start again with THEIR primary doc and THEIR group...and yes yes i want to do all those things...but the prospect of just starting over with this period, referrals and on and on, makes me physically ill.

    So i guess this truly IS my last shot.  if the doc gets it wrong , (I will tell him NOT on the blister, NEXT to the blister), or screws it up somehow, i will just have to go a few years before i EVER try this again.  My skin is so raw now i am just beyond pain almost.  I feel like how can i exist like this longer?  Man o man.  I truly think i have had this more than a few years, but ya know, i prob just thought thats what my body did, or i was having a breakout or something.....but THIS year i KNEW something else was going on....it was more sustained...it was clear they were blisters...and i knew that wasnt normal....something is up.

    But ya know...if it weren't for "intelligent" doc, even though he let me down...my dermo STILL wouldn't know what it was...he would prob be giving me more creams, ha.

     

    but i knew i had to give up on him knowing anything...i just didnt think it would go down like this!

     

    Boy did I have "squirmingitch" yesterday...ha....i'm telling you....i had new years off for the first time in years, and could hardly enjoy it...trying to watch my football and my parade....ha.  mixing it all up with tranquilizers (just kiddin) but felt like that.  I just didnt want to FEEL my skin at all!


  21. Hi all, and thank you SO very much for helping me.  Its funny because, originally when i called my insurance about what they may or may not pay, the lady i had the phone said one of her friends went gluten free "just for health", nothing particular.

    But she did tell me that the person said the first 3 weeks was HELL but after that it got better.

     

    So thanks for prepping me, I am gonna read all that...thanks for the links.

     

    okay, so...miss failure here...HERES what happened.

     

    So I went to "educated" guy, and also thinking, since it was the week between christmas and new years should be pretty slow and maybe encourage him to take the time to biopsy me.  I was wrong.  He fought back AGAIN.   Nice but still.

    He says "i can't do that when your guy should be able to its SO easy"...i felt like saying...its so easy, he didnt understand it the LAST time i gave him your paperwork back at thanksgiving when he told me a GI should do the skin biopsy...lol.

     

    So i told him again "well, to be honest, it ISNT easy for him apparently, and when i called on the 23rd to his office, they WONT let me talk to him, wont tell me whether he has the correct paperwork, WONT tell me if he knows how to DO punch versus shaving....so i really have no confidence in him at all, i want to PAY YOU....it costs me hundreds just to talk to YOU anyway"

     

    like wheres the ethics?  i could already have saved a ton of money and heartache had i let him do it back in october...

     

    but nope...he got frustrated...left the room, came back with a box WITH the correct vial for the punch...he gives me the box, the list of labs that still have to be WRITTEN UP by the hmo guy....(i asked him if i could do the labs TODAY?  he said yes.  But that wasn't true, because when i looked at the papers...they were print outs of the TYPE of lab....but nothing with his doctor name or anything that i could actually walk into a lab with.  So i ask the front desk on my way out "these arent the actual labs are they?"

     

    she says "no...but YOUR doc (hmo) can write them up based on this info"

     

    i am crying again now.  Because..i HAD some of these printouts last time, and my hmo guy didnt write me up anything from them LAST time, so what would be different?

     

    so i did the whole thing..i was SINCERE, i started to cry....he just said "you gotta go back to him"

     

    WHY?  i dont know. 

     

    so, even though his office AND the parking lot were pretty much empty, I had some "juicy" ones for him and everything...

     

    it was a waste, AGAIN.  i was in despair again at this point.

     

    I feel like a groveling puppy dog...I had to call BACK the place thats my nemesis....evil gatekeeper chick and the doc who wont talk to me.

     

    she says "well you didnt keep the one on the 23rd"....like ITS MY FAULT now....even though i have tried every which way from sunday.

    shes a Biiiach....and has been this whole year...which is why i want DONE with both of them.  But im stuck now...tail between my legs.

    So i said "if you recall i DID call you and asked you if the doc had my paper work and if he was prepared to do a PUNCH biopsy, not a shaved one and YOU didnt call me back"..

     

    silence...she doesnt care...its her big chance to punish me now.....shes a brat and has no compassion or understanding of what an idiot the guy SHE works for is either...

     

    but anyway...i get no choice...so i said "okaaaaaayyyyyyyyyy then WHEEEEN can you squish me in?  i am in constant pain and suffereing until someone TAKES MY SKIN"

     

    she lectures me again.....and then says ="january 20th"

     

    january 20th?  I said LOOK...its not MY fault, he didnt know what it was...i have had to pay umpteen times for the uci guy and ive been back here TWICE since then with nothing being done.

     

    she doesnt care....she is going to PUNISH me now....punish the suffering patient....sounds like great medical employee to me....someone who loves their job....the doc who took an oath......yeah whatever....

     

    so....i am back to dumb guy......and you would think that they should squish me in WHENEVER i have an actual sore right?

    like...o i pencil in my body to produce one exactly on the 20th......jerks...she doesnt care.

     

    i said "any cancellations?"

     

    she says "nope"

     

    yeah...she is going to do that till the 20th dont i know it.....evil litte witch...its not ME who doesnt know what to do.

     

    so I said "well i hope to produce several on that particular day"....jerk off.

     

    she says nothing.

     

    i said "would you call me if any cancellations come through?"

     

    she says "YOU are welcome to call in the mornings"

     

    isnt she special?

     

    so i said "how about tomorrow?"

     

    she says "well he is only in the office tuesdays and thursdays.

     

    lovely...the uci guy only does MONDAYS...he only does tues and thurs...and thats AFTER the holidays..

     

    i mean..they arent even trying.....they dont give a crap...

     

    i have ZERO confidence he will do it right. none.  but im stuck...i was going to go off gluten YESTERDAY rain or shine.

    but im sick to have wasted this whole year of gluten for NOTHING.  So ...dont hate me or think im a wimp...but i just HAVE to try one last time, even though i know its 80 percent useless...

     

    i think something will happen between now and then, and it wont happen again.   and then i have no choice, i have to go gluten-free immediately.  I have already been on it too long...it does scare me....for me to be eating crap thats killing me.

    and the pain....and the benadryls ,etc....

     

    so.  I wimped out.  havent gone gluten-free yet and im suffering...boy am i suffering...had a bunch of them this morning.....but what good are they?  i have to have them on the 20th.  this is INSANE.  thanks for caring.

     

    i just been so depressed.

     

    (((irish))))