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irish11

Questions: Skin Biopsy Of Dh

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Hi there, I am new to celiac.com so bear with me.

 

Without going through my whole long story (similar to most here).  A year and a half later, still having a difficult time with GETTING the skin biopsy.  I may have a chance this week which I can post in a bit.  But my question is, if my skin is NOT producing enough eruptions or an eruption the DAY I go in, will the antibodies still show up?  It has been horrible all year and NOW that i might finally get somewhere, this week its calmed down a bit, but still there.  But is it enough?  I have NOT been able to do gluten free yet, that I so desperately need, because I keep being told if i do that WHEN and IF they ever dang test me, it won't be accurate.  I can give more background in a bit....but the doc that will do it (i think) is NOT the one who told me I 99 percent have it.....THAT doc wouldn't do it, cuz he felt unethical charging me a lot and sent me BACK to the uninformed HMO one....long story.  Even though I begged him to please do it anyway, I would sell my house at this point to get this DONE so i can help heal myself.

 

Thanks:)

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Celiac.com Sponsor (A8):

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Welcome to the board. The doctor that told you he was 99% sure you have celiac (DH) did he put that in your record? If he did then you should consider yourself diagnosed IMHO. Has anyone done a celiac panel on you? If so what were the results?

To answer your question, the biopsy needs to be done to the area next to an active lesion. If you don't have an active lesion when you see the doctor then some docs will let you call in when one does become active and fit you in that day. Don't know if your doctor will do that but worth asking in the event all your lesions have healed on the day of your visit. 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Have you had celiac blood tests? I know that DH presents differently but the blood test is a start.

Hubby and I do not have DH, but I am formally diagnosed (2013) with celiac disease and he went gluten-free per the advice of my allergist and his GP 13 years ago. All his symptoms went away and he has been gluten-free ever since. Would he have preferred a formal diagnosis? Yes. But he will not do a gluten challenge and i can not blame him.

If you think gluten is your problem, you can simply give it up. Strict adherence is critical. Search the forum for DH advice. Expect it to take a year or longer for healing.

I am sorry that you are suffering so much!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Hi there.  Sorry if I make this long, but will try to encapsulate.  The background to all this....I am 51, caucasian.

In my 20's i had 2 courses of accutane for cystic acne.  Took care of it.  Problem free for more than 20 years.  Around April

of this year...started getting "things" on my back, back of neck....top half mainly.....hurt, itch, all that.  I had NO idea about anything.

 

After a few months of my own stuff (maybe staph infection?), hibiclens, things , antiseptics...finally gave up as it got worse.

I took myself to an urgent care in May.....got 2 weeks of antibiotics and a lecture about my eyebrows (I had these "things" on my

eyebrows too)...nothing....went to primary end of May...he said "acid burns?"  sent me to HMO dermo....who gave me more antibiotics.

 

Did HIM about 2 or 3 more times over the summer till i went "they have NO idea, none".  Now let me tell you EACH and EVERY one

of these doctors I will tell you about....i described it exactly the same "ELONGATED AND SMALL VARYING TYPES AND LIQUID COMES OUT, CLEAR LIQUID"...at the time, I didn't realize that I was describing the definition of a blister, ha...but THEY SHOULD HAVE.  Okay, so.....I decide for second opinion...I went to a mission viejo guy that a friend of a friend said diagnosed her shingles.

Sounds good.  This was the best....i was a complete and TOTAL mess at this time...they were everywhere...i was scabs, and blisters, and patches of just crap...I humiliate myself with all of them by walking in...IN A TANK TOP...i have no shame at this point...i need help.  Know what this guy said?  "Are you generally a NERVOUS person?  Do you tend to just scratch at your skin a lot unconsciously?"

 

yeah, went downhill from there.....i was absolutely stunned with his next thing "Have you heard of CUTTING?"  WTF?

as a matter of fact all, i have heard of it NOW...asked a 20 something at work and he informed me.....THATs WHAT they thought of me?  fantastic...would like to SUE that guy...but another day...lol....im in my car crying.....now im in despair...what the hell to do next...now they think im a psych case...someone who never met me before.....im in hell....

 

i take my mom to HER doctor over the summer...and i say "can i ask your opinion about something?"

She, who knows me, says "you need to go out of network to......(i better not say right now).....there is something wrong...i think you have something"

 

finally...i think to myself....GREAT idea...so i self pay...to this place....and yup...THAT guy says...after looking at me for 30 seconds...

 

I am pretty sure you have DH....which of course i never heard of....blah blah....had to look it up....get informed , buy books...

now THAT day...he wanted to skin biopsy it....but this was all new to me and i didnt know who would pay for that or what...so i asked if i could check with my insurance first and come back?  he says fine...but really really wanted to do it (i rue the fact i DIDNT that day, i have lived to regret it)....after my research me thinks..."yup this is it...everything..this is it"....i go BACK to that guy...all of a sudden he has cold feet "i wouldnt feel right about charging you...go back to hmo guy"...WHAT?

I said "no im good...i'll pay"...no he pushes back...whats THAT about....okay....my back is a mess right now..and how much longer?

back to hmo guy....i tell him what other guy says...he says "well im not sure how to do it".....he was honest....fantastic....

 

i go back to other guy...PLEASE do it...i want to go gluten free before i lose my mind, my job, my sanity and i want to wear clothes again ....that guy bounces me  back "just give me the number of your guy, i will tell him what to do"....o that sounds good.. ALL the websites say NOT to have someone who doesnt know how to do it, do it....where is this going?

 

well in his office...IN FRONT of me...he calls my guy and says to the hmo do " This patient  COULD SUE YOU (hmo guy) YOU HAVE TO DO IT"...is THAT what this is about?  well yeah at this point id really like to sue SOMEONE for my year of hell...but anyway...maybe dont threaten someone you are sending me back too...well...i supposed to see THAT guy this week....sounds good? no not to me either.

 

and, i must say out of ALL these appointments...i have been full of blisters the whole time....i count 8 months going....but NOW as of LAST week, it has settled a bit...well OF COURSE...my understanding is...you arent full blown for 12 months straight with no interruption...my understanding is that EIGHT months is pretty dang long.  but now you know whats going to happen

 

"well i dont see a whole lot there right now to test"...yeah...ive had them the past 10 appts but NOW....no not so much.  they are smaller right now...and now mainly around the neck hairline, face, and front of neck..as opposed to the GIGANTIC RAISED ones i had for the 4 months previous....still symmetrical....still all those things...i had some on my shoulders last month that have kinda died down right now...of course...

 

I am at the point....i have ZERO confidence in HMO guy....other guy..who is reputable....but unwilling or scared? wont do it...feels unethical taking my money (who ever heard OF THAT?)  gotta laugh...

 

and now i am not in a full on....pain and itch every second break out...

 

now....everyone will say....

'well you have to wait for the NEXT breakout and hope by then you find someone qualified"

 

i am so over this right now...i KNOW i have it...is all i can say...for my own future i want it documented....but i am unwilling to destroy my intestine anymore...for people who dont give a flying you know what.  jan 1st i am leaving gluten.  I did that for about 3 weeks in august.....and it pretty much worked...but then read DONT do that....cuz then they will have WHAT THEY WANT apparently...a false negative....what i DONT get...is what everyone is scared of?  what IS IT about DH....that has everyone not wanting to touch it?

 

i should add....somewhere in there....i asked my primary could i get a GI?  for what he says......for this thing i know i have....and I need a path...nothing is working....he emails me on the group site "I dont think you have celiac...but we can run a test"

 

i said A test.......as in one test...as in.....I really dont care what you are telling me about the 5 or 6 things if you are IGa deficient or whatever the hell...anyway...so in answer to the question...i guess i had ONE test...and all i got message back was "its normal".

 

what was normal i dont know...i DO know that people are saying DH rs usually do test negative on SOME blood work if the right ones arent done.....

 

i could go on....im not an idiot....i have done my research....i am fully confident i have it....what i am is ETERNALLY EXASPERATED and ANGRY BEYOND BELIEF....cuz now what will happen is...yeah i know...i go OFF the gluten in jan....all of a sudden they will be beating down my door to do it....but it will be TOO LATE.....im not hanging anymore....i need to find SOMEONE in the next week or so....or screw it....i know ive had this at least a year or more....b4 i realized it was anything.....my brother DIED of non hodgkins lymphoma in his FORTIES....my mom is type 1 diabetic....my grandma had rheumatoid arthritis...and my cousin has lupus...

 

yeah, call me crazy but IM A LITTLE CONCERNED...and not going to smoke 10 packs a day anymore to prove it to someone 4 months from next tuesday...(my little analogy).  But I am still hoping by some miracle....but not hedging on my date....its MY life and i know what i know.

 

ultimately...my question at this point is.....i have READ that the proteins or antibodies or whatever should still be in the skin for like 6 months or something?  so why would you NEED to be erupting at the time to get a good result?  im just asking....cuz no, i dont want to give them the false negative i KNOW they are all looking for at this point by having a bad test....so if i shouldnt do it now, i wont.

Also....the "educated" doc...wanted to take the sample from behind my ear originally where i had a big one AT THE TIME...i dont have now....if im not in eruption..is there an ideal spot for good result?  back, neck....does it leave a scar or?

 

just wantin to be fully informed....thats my tirade...thanks for listening:)

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I forgot to add....by these docs i was similar to most of you....they thought eczema, folliculitis and the like...

 

the hmo doc i was speaking of had me on doxycycline for 4 MONTHS...till i just stopped them..they did nothing....it wasnt till i read books and you guys and stuff that i realize...i should have been on dapsone i guess for  comfort this whole time....or at least part of it....i know i suffered the worst for like 5 months..so i no longer care to have the dapsone....but it was nice that NONE of them offered it, because its a condition they didnt even acknowledge for the most part....so ...i just get off the gluten...i save MYSELF....and at the end of the day....you only got you.....to do what needs be...but i can tell you this was the WORST year of my life...i'd say in about 10 years...i was in such pain and itch and not knowing what it was....i could not tell you...people in MY inner circle were so worried....but they didnt know either...i only feel slight relief now BECAUSE I KNOW...and feel like an absolute dummy that it never occurred to me IT WAS WHAT I WAS EATING....i hit myself 10 times for that one.... I read the book by Peter Green (y'all are prob familiar), i spent endless hours on sites....i do have to thank "educated" doc for that one...but he ultimately let me down...which is why i kinda want to go to someone now UNCONNECTED with all of these guys...to get an unbiased deal going.

 

Anyhow...funny thing...the HMO guy over the months kept getting me creams...i told him they were making it worse (i felt) so there again had to use my OWN logic skills to just not use them....THEN he gave me one for my eyebrows THAT CAUSES CANCER....says right on the label...lol....so i told the pharmacist....x-nay on the cream ay......i wear contac lenses....idiot....oops sorry....did i say that?

 

okay...yall are prob SO SICK OF ME....but this is how desperate i am to get this done.....going on the net....oyvay....

but hey why not?  help comes from whence it comes...

 

thanks you guys:)

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ooops...one last thing i wanted to ask...before my week is out....have any of you done Entero labs? and what do you think....i know its not the same....but it would be SOMETHING i could have on paper....shoud a fecal test show ANYTHING related.....

 

i think my primary should have OFFERED that to me as well.....but he doesnt seem too keen on offering anything.....not a regular blood panel, not thryoid....i mean i AM 51....so you would think.....esp. since he knows im concerned....

 

its too late for me to change medical groups i think for this year....unfortunately.

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ooops...one last thing i wanted to ask...before my week is out....have any of you done Entero labs? and what do you think....i know its not the same....but it would be SOMETHING i could have on paper....shoud a fecal test show ANYTHING related.....

 

i think my primary should have OFFERED that to me as well.....but he doesnt seem too keen on offering anything.....not a regular blood panel, not thryoid....i mean i AM 51....so you would think.....esp. since he knows im concerned....

 

its too late for me to change medical groups i think for this year....unfortunately.

 

 

A MD will not offer things like Enterolab stool testing as they are not considered legitimate medical testing.  I doubt any insurance would pay for it either.

 

 

http://www.cureceliacdisease.org/archives/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex

 

"Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?

We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support.

Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what has been published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease......"


 

 

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Thanks for responding.  yeah, I figured it wouldn't be recognized, I realize that.  I was just wondering if anyone has DONE it regardless and what they thought of results?  or their experience if the results matched or not.  Obviously I was hoping for better from the medical community, but sadly, looks like the dermo industry as a whole isn't too up on this....so just lookin at what IS available and out there.

 

I also realize that the medical community aka official doctors with medical groups would have ZERO interest in recognizing it, I GET that.  What I was thinking was though...I HAVE read that some on here have some luck with their primaries ordering tests of various kinds.  I just thought that odd, he wouldn't order ANYTHING, i mean HE could order something...a thyroid, a basic panel, a stool...hell hes all about when do i want my first colonoscopy, but nothing else.  Must be he gets MONEY or CREDIT of some kind for THAT, like the mammos,,,i get all that.

 

The primary just wants to close the door on the topic, I can tell.  Not really caring if you are getting anywhere with your MEDICAL situation.  Or else i guess this forum wouldn't exist eh?  if everyone had success at it?

 

i forgot to add that...the FIRST time i went to hmo dermo after the other guy sent me back to him?  HE told me that he didnt know about those tests and that I would have to go BACK to the primary to get a referral to a GI...and go from there.  That was for a skin biopsy...lol...this was b4 thanksgiving.  And i was thinking "what?  why would i go to a GI for a skin biopsy?"  and thats the guy they want me to go see this week.....and the "educated" guy is telling me "o just make sure you seen a vial there and and"

 

what?  why dont YOU do it.   This is what still is baffling to me....I know there is a game apparently, and i will get my answer eventually about whats going on.  It will just be too late to help me.  Yeah...I go gluten free a few years and then have to GLUTEN UP for 4 months to please and suffer on THEIR timeline?  The whole system is quaked.  I just wish i knew all this back a year ago when I believe the things first started showing up.  But heck, cant be too mad, no one in MY circle is even familiar with celiac, period...let along an unusual thing called "the skin manifestation"...they have no idea what that even means, or what it means FOR YOU.

 

crazy crazy, as one of my friends said to me "you WOULD get a rare thing no ones heard of and no one to help you"...yup, i would.

thing is, i dont believe it IS all that rare, I'm sure its not, you always have to wait for science and tech to catch up to WHATS ALREADY THERE.  Its like diabetes right? I'm sure plenty of people died of it in the early 1900s or 1800s...."so and so just up and died at forty...we dont KNOW WHY"....how would they know they had something called diabetes? or kidney failure? or ANYTHING...heck the diabetes tests not too very long ago were "come into our office once a week, we will prick your finger and see"

 

sounds CRAZY now right?  you gotta know what your sugars are ALL the time, with your OWN meter for a good chance at longevity.  But try telling that to a doctor 40 years ago.  "well you register 90 right now, guess your good", yeah prob cuz the person hadn't eaten...lol.

 

sad really.  But at the end of the day, none of it helps me i guess.  Still am where i was.  I guess i decide 5 years from now (when im sure this will TOP the health shows finallly), whether i want to regluten and damage myself FURTHER than i already have.

Its a killer.  I shall remain eternally frustrated i guess, and something i will have to accept.  They win:(  I lose:( 

And there you have it

 

i appreciate learning from the board though.  Thanks for reading.

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I understand your frustration IN FULL! And I'm sorry to say that I seriously doubt your HMO derm will do the biopsy correctly. It looks like you've been doing your research & you know the odds of getting a false negative on the blood test as well.

 

I hear you and I understand your entire rant & you are justified in it. But bottom line is bottom line now that you are aware of all the pitfalls involved. You don't need anyone's permission to go gluten-free. I have not regretted it for one second and am so very glad I did not prolong my suffering by trying to satisfy the reigning establishment. I knew what I had & no one needed to confirm that for me. I knew that the sooner I got started on gluten-free the sooner I would heal. I knew that the longer I ate gluten the longer it would take for me to begin healing. 

 

There is not a chance in hell that I will ever willingly eat gluten again & most especially not for any medical testing. It's not going to happen. Period. 

 

I am so sorry this has all gone down for you the way it did. And it must be particularly frustrating when the other derm recognized it for what it is & came so close to doing a dh biopsy. I have no clue why he backed out. Perhaps, just perhaps, if you wrote him a letter appealing to him once again, he might do it for you. 

 

You know your choices now & it's your decision to make. I wish you the very best. And I think you deserve at least a few hugs.

 

{{{{{{{{{{{{{{{{{{{{{{{{{irish11}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Thank you squirmingitch, I really do appreciate it and I could use and do love the hugs:)

 

 

so here is my update:  I know how correct you are, I was in SO much pain the past few days, I couldn't even look at the food on christmas, I just wanted to cry.  I drugged up.  I know this is it, I have to stop. truly.

So I am giving it ONE more last ditch effort...

 

First off, I didn't go through with the HMO guy....because, I decided to call his office tuesday morning "may i PLEASE speak with the doctor"...per usual, the office gals wouldn't let me, they are the gate keepers (how nice for them and their "have a happy holiday", like they care...lol).  So I said "okay, well before i go in today, may I ask if he has me down for shaving biopsy or punch biopsy or?"

 

she gets all annoyed, puts me on hold for a split second (meaning she didnt ask him), comes back and says "its usually shaving", which i take to mean she has NO IDEA that thats NOT the correct answer for DH.  yeah, im not a sucker, i was just desperate.

I looked at myself in the mirror and said "you know this is stupid, they don't know how to do it"...so I  didn't.  Whats the point?  They take my 40 dollars, cut skin in some random location they have no idea, for a shaving thats not the proper layers of skin for the immuno test.  this is insane.

 

so after thinking on it, I thought I would give "educated" guy one more plea.  I called and asked THEM if they had any cancellations this next week, this is it.  They have one on monday, before i have to come in to work, so that was good at least.  I told them I would take it write me down.  I will just sit there and cry right in front of him I swear.  And I'm going to say "doctor, if you don't do this today, I shall remain undiagnosed with no help and nothing on any chart forever.  I will never go back to gluten once I'm off, and I started yesterday.  Are you going to send me away?"  he will prob get completely ticked off and stay stubborn.  But i have to try.  Cuz thats it, I couldnt even enjoy the past few days....Church in a top was a nightmare, taking friends around looking at lights in my TANK TOP in freezing weather was a triple nightmare (embarrassment, cold, and pain, and self drugging)...and i just can't.  I can take a lot...but 8 months is asking a lot.  I did that.  Anyhow, thanks for the hugs and help.  I know i'm not alone, and most of you have been down this road.  So you  are prob thinking "crazy girl she needs to get over it"...I KNOW...I just ordered myself some gluten free cookbooks for christmas...LOL....its a start.

 

hugs to all of you...Irish:)

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No Irish, i don't think you're off your rocker. Monday is not so far away & if there's a chance he will do it then GO FOR IT!!!! I'm 100% behind you girl!!!! 

I'm limited on time at the moment so everything will be brief.

 

One MUST HAVE cookbook is America's Test Kitchen "The How Can It Be Gluten Free Cookbook" I saw WalMart had it for about $15.60 @ Christmas. Fabulous book!!!!!!!!!!!!!! 3 years gluten free & IMHO every bread stuff the hubs & I tried sucked big time. Just vehicles for food to be on & not so good that we kept it up. I tried the dinner roll recipe in this cookbook & OMG! it's fabulous!!!!!!!! Even the hubs loves it & he won't eat anything he's so picky.

 

Let us know what happens Monday. I'm sending positive vibes, white light & anything else I can for the doc to do it. 

 

{{{{{{{{{HUGS}}}}}}}}}}}} and love. Hang in there hon!


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Good luck on Monday. I have given you a link and a quote from the NIH on how they need to do a biopsy. Just as a 'refresher' for the doc before he does it. I hope he will do this for you but if he doesn't you don't need anyones permission to be gluten free. It is a good idea to limit iodine for a bit when you go gluten free as it can keep the antibodies active for longer. 

 

 

http://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/dermatitis-herpetiformis/Pages/facts.aspx

 

A skin biopsy is the first step in diagnosing DH. Direct immunofluorescence of clinically normal skin adjacent to a lesion shows granular IgA deposits in the upper dermis. Histology of lesional skin may show microabscesses containing neutrophils and eosinophils. However, histology may reveal only excoriation due to the intense itching that patients experience.

Blood tests for antiendomysial or anti-tissue transglutaminase antibodies may also suggest celiac disease. Blood tests for epidermal transglutaminase antibodies are positive in more than 90 percent of cases.5 All of these tests will become negative with prolonged adherence to a gluten-free diet.

A positive biopsy and serology confirm DH and should be taken as indirect evidence of small bowel damage. A biopsy of the small bowel is usually not needed for DH diagnosis. However, if clinical signs of gastrointestinal disease are evident on examination, further workup may be required.2 Whether or not intestinal damage is evident, a gluten-free diet should be implemented because the rash of DH is gluten sensitive.4


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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A dx of dh is a dx of celiac disease & no further testing is needed. From the U of Chicago Celiac Disease Center:

"A skin biopsy should be done on a non-affected portion of the skin near the rash when there is an outbreak. It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive."

 

http://www.cureceliacdisease.org/archives/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed

 

And more on dh:

http://www.cureceliacdisease.org/?s=dermatitis+herpetiformis&post_type=faq&submit=Search

 

Irish, I just want to re-iterate a few things b/c they are very important for you to remember.

 

When you go gluten free you may experience some very weird effects at first. It's something called gluten withdrawal & it truly exists. Most celiacs experience it at first but not everyone does. I did but my hubs did not; most likely he got off lucky due to being gluten light b/c of me for 5 months. I'm posting some links about that. I just wanted you to know in case it happens to you b/c it can be very unsettling ~~~ freaking out unsettling. Some people, including myself (had I not known beforehand) even consider going to the ER b/c of the symptoms. Also among the symptoms but not in the linked threads is hunger ~~~ stark raving mad hunger. I could not go 20 minutes w/o eating. I would literally vacuum with one hand while eating an apple with the other. Just go with the flow. My withdrawal lasted close to 2 months. Dizziness in the extreme, at times swaying or swerving when I walked, heart pounding & seemingly beating erratically, mood swings enough to make menopause seem like child's play, hot flashes too, fatigue, brain fog, anger & more. I had some of these things before going gluten free b/c they are part of celiac but they certainly got magnified during the withdrawal phase. As to the hunger aspect, eating some protein with some fat at the same time will help some. Example: banana with peanut butter on it. We are all individuals & as such experience a wide range of symptoms.

https://www.celiac.com/forums/topic/94694-interesting-info-about-gluten-withdrawal/

 

https://www.celiac.com/forums/topic/79495-what-is-gluten-withdrawal/

 

https://www.celiac.com/forums/topic/81872-are-these-symptoms-of-gluten-withdrawal/

 

https://www.celiac.com/forums/topic/76787-did-you-have-weird-symptoms-when-you-went-gluten-free/

 

IMHO eating out is just too risky unless you go to a place that is totally gluten-free.

 

Read the Newbie 101 & keep going back to it to double check. There is a huge learning curve to the gluten-free diet & it can be overwhelming.

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

 

For those of us with dh, NSAID's can aggravate the dh so be aware of that. Tylenol is the least offender.

 

Also, with dh, iodine can be like pouring gas on a fire so you might want to limit your iodine intake for a while. See thyca.org for a low iodine diet (minus the gluten of course).

http://thyca.org/pap-fol/lowiodinediet/

 

 

 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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So irish11, what happened yesterday? Did you get the biopsy?


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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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))))

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I'm so sorry this is happening to you. My hubs had a nurse at his urology doctor who was like that. She ended up getting fired finally. Okay, so is there ANY other dermatologist in your HMO plan that you could go to? You now have the vial, the list of labs etc.... you could give to the new dermatologist. I truly do not understand why the 1 doc would not do it for you. 

Can you call your HMO & tell them what is going on with this jerk off doc? That he said you should go to the GI to get a skin biopsy???? That's just insane!!!!

 

Well here's something you can try starting around the 17th since your appt. is the 20th. Go hog wild on seafood. Shrimp, lobster, crab, oysters, whatever you love most. The iodine in that should give you a nice flare all ready for the appointment on the 20th. 

 

Meanwhile

 

More {{{{{{{{{{{{{{{{{{{{{{{{{{{IRISH}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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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!

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Here's why dairy contains so much iodine:

https://www.celiac.com/forums/topic/89923-iodine-levels-in-dairy-products/

 

Yes, if one wants to go low iodine then one uses plain salt instead of iodized salt. I was low iodine for quite some time and had to call many companies to find out if they used iodized salt in their different products. Oddly Vlasic pickles use iodized salt if they are produced in 1 plant but plain salt if produced in another plant & they only way they can tell which plant any jar was produced in is by the code on the lid so I didn't eat Vlasic pickles. I called Mt. Olive & they use only plain salt in their pickles so that's the brand we used. That info. was a while back so you would need to call fro current status on things like that.

 

It's funny you bring up rye as a specific trigger for you. Most of us with dh experience fewer, milder GI symptoms than "normal" celiacs and I did not have much in the way of "D" or those awful gut wrenching cramps however, I can positively say that I was guaranteed to have a really bad bout of the aforesaid any time I had anything with barley. Barley was absolutely a strong trigger for me GI wise. I wouldn't put a malted milk ball in my mouth b/c I knew it would get me, same for beer, same for Carnation Instant Breakfast Chocolate Malt flavor.

 

Okay, so you can use these days until the 20th to say goodbye to all your favorite gluten foods. I will say the goodbye will only be temporary though as there are gluten free replacements for almost every gluten food out there -- it just takes a while to find them & learn where to get them or how to make them.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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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...

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I'm rushing this morning so if I sound short don't take offense --- just in a hurry okay?

 

Soy is fine!!!!! No iodine in soy that you need to worry about. The whole thing about soy is that many celiacs can't tolerate soy --- makes them bloated or gassy or such -- it did me too but after I was gluten-free for a year & my gut healed up some then I am able to tolerate soy -- I just don't eat great heaping amounts of it.

 

Eggs ---- whites only m'dear --- the yolk is where all the iodine lies.

 

I get dh in my scalp too. Sucks!

You can have salt, it just has to be PLAIN salt not iodized salt.

 

For breakfast you could have egg whites, fried potatoes or hash browns, steak -- make sure the potatoes are peeled b/c the iodine is in the skin otherwise they are fine. You could cook all 3 of those together for a hash type effect. It's GOOD! Peanut butter on bananas or apples. Fruit is good except raisins & grapes --- iodine factor. Of course rice is fine. Nuts you can have -- cashews. peanuts, almonds, pistachios, whatever kinds you like.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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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))))))

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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.

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You got it heaped upon you didn't you with care giver for mom & working full time. {{{{{{{{{{{{{{{{{{{Irish}}}}}}}}}}}}}}}}}}} I know about the care giver thing having done it myself. It ain't easy! 

 

Here are some threads on gluten-free shampoos & topical products.

https://www.celiac.com/forums/topic/89346-makeup-and-toiletries/

https://www.celiac.com/forums/topic/108589-gluten-free-shampoo-conditioner-body-wash/

Personally I use Suave Naturals shampoo & conditioner, works great , smells fantastic & is cheap. Vaseline Intensive Rescue Repairing lotion for anywhere on my body -- I must lotion my hands 40 times a day. Afterglow cosmetics - everything they make is gluten free but pricey. There are other cosmetic companies out there that make gluten-free now so just do a google. 

 

Any nuts are fine as long as they are gluten free & as to the salt -- if they say sea salt you're okay. Planters clearly labels any gluten ingredients & even if they're made in a facility that processes gluten products. Otherwise you can call or email companies to find out if they use plain or iodized salt. Now don't go low iodine forever -- one shouldn't do that --- just for a few months. 

 

Oh & your'e so welcome! :)

 

My scalp was so bad off that I didn't "wash that grey right outta my hair" for 2 years. You wanna talk about looking like an old hag???!!! OY! :blink:  :blink:  :blink: I finally got to the point where my scalp was calmed down enough that i could use haircolor. I use Loreal  Superior Preference -- everything in the box is gluten-free. I'm sure there are many haircolor brands out there that are gluten-free but I've always used the Loreal so that's the only one I check out.

 

When you go back to iodine then you can have Raisinettes!!!!!!!!!!!!!! YUMMMMMMMMMMMMMM!!!!! I'm a raisin freak too & it killed me not being able to have them. But Raisinettes are gluten-free & it says so right on the package. I also like to make fruit salads -- apples, raisins, pineapple, mini marshmallows, pineapple juice, mayo & any other fruits that tickle your fancy and that goes for nuts too. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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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:)

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  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, they have no earthly clue "the skin thing" is in many ways worse than having GI symptoms. They have no idea that if we get a teeny crumb we can have to pay for it for months & months or even years of extended itching, stinging, burning, ugly skin!

Honestly I don't think 1/2 of 1% of them understand the skin thing & do not think it's celiac at all. They just don't know. They think it's some kind of allergy or a "skin problem" not that it's our immune system attacking our own skin. It's just not an easy concept to follow. Heck, it wasn't an easy concept for us to get & we have it! 

 

YES my friend, you will eat raisinettes & popcorn again! Raisinettes & spanish peanuts are good together too.  :D

 

I am very fortunate in that I have some friends who care enough to try to understand and a few have even taken it upon themselves to actually research celiac disease all on their own. They have amazed me with their understanding of cross contamination issues and will tell me about how they were shocked that such & such pizza place now advertises a gluten-free pizza crust and how they just wanted to scream "it's NOT safe for celiacs though because it's cross contaminated!". I even have one friend who turned me on to an amazing gluten-free brownie mix b/c she was in the grocery store when a lady was handing out samples so she tried it & reported to me. She & her hubs actually make it for themselves b/c they find it to be so delicious! :lol: BTW, that would be Krusteaz gluten-free Double Chocolate Brownie mix

http://www.krusteaz.com/gluten-free-mixes-products-4294968577/gluten-free-double-chocolate-brownie-mix-4294968624

 

And seriously, IMHO, the ONLY gluten-free cookbook you need is this one. Both my hubs & I are dazzled each time I make a different recipe from it. OUTSTANDING!!!!! The biscuits are to die for & I guarantee even gluten eaters will never know they are gluten-free. 

http://www.walmart.com/ip/32975932?wmlspartner=wlpa&adid=22222222227021738627&wl0=&wl1=g&wl2=c&wl3=53100017928&wl4=&wl5=pla&wl6=75186171528&veh=sem


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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