Dh Doctor In Orange County, Calif?

[irish11]

still looking for knowledgeable for skin biopsy by an EXPERIENCED person and need it NOW.

Cant do gluten any longer im DONE already, y'all know the feeling i'm sure.  I told myself Jan. 1st and i'm sticking to it...no matter what...just REALLY want to prove it for lord knows why....for access to qualified docs and nutritionists and my future life...but its been OVER a year, and can't get anyone to listen:(

[irish11]

okay,  less picky now...hows about Los Angeles, or San Diego or anywhere...california...im a good driver:)

[cyclinglady]

Why not contact UC San Diego? They have a celiac center.

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[irish11]

Actually, I DID do that last week...got the run around there too....when i tried to find out about DH doc specifically, didnt get ANYWHERE...got celiac GI stuff and everything else, and oh by the way THAT first opening was next March.

 

yeah, not gonna eat gluten for 2 more months for a consultation about a consultation about a consultation...OY VEY.

but this is the roller coaster, i am finding out, horrible horrible.

 

I told them i would call them back about that march thing (not) and they "werent sure" which ones of their docs DIAGNOSED DH..

 

thats the key word...i also found THAT out, i aint playin.....the proper terminology apparently is "a doctor qualified to DIAGNOSE DH"

 

yea i picked that up from UCLA who i ALSO called to no avail...so i was hoping for anyone out there in so cal who had this and can give me a particular doc name...but i guess no one is out there:(  sounds about right.

[LauraTX]

Unfortunately, with many specialists, appointments are going to take a little time.  I assure you that a good doctor is worth the wait.  I highly recommend taking an appointment at one of the centers you mentioned, because the longer you wait to call back, the longer out the appointment will be, and you at least have an appointment there.  If you get into a Celiac GI specialist, they may help you get in to a DH doctor faster.

[irish11]

sigh.  thats the rub aint it?  right NOW my arm is burning so bad...and a part of my back...i dont think i can TAKE another week, let alone month, when i know what the answer is.  Its just not fair.

And i am still not getting why they treat it like this?  Jeez, if i was obese or something...i could prob get someone to do the whole gastric thing in less time than its taking me to get a consultation.....no im not kidding....i knew a guy.....from beginnning to end, even with the psycho analysis they put you through...he had his gastro done about 4 months after the FIRST consultation.....

 

and hear i sit, with my unusual disease i guess.....suffering suffering...is this true?  they dont care? 

i have yet to be convinced otherwise.

 

sigh sigh sigh....i thought i was getting the skin biopsy back in october......i've already suffered...

 

i know, nothing you all can do...

 

thanks anyway:(

 

a friend of mine at work says "well what i do with something like that...is you go to the ER and demand whatever test it is"

 

lol.  yeah but thats JUST IT..with THIS disease....it dont work that way honey...you are screwed each way from sunday.

 

If i WENT to the ER demanding to be skin biopsied so i could move on...they would give me a funny look....cuz THEY never heard of it either prob...and then REFER you BACK to your hmo.....AAAAAAAHHHHH

[irish11]

its not a POLITICALLY CORRECT disease...thats it....i think i have it!

 

diabetes is the in thing, obesity is in, and some cancers are in

 

DERmatitis Herpetiformis?  not in....not enough money in it?  is THAT it?

[irish11]

and just to add....i have probably damaged my LIVER beyond beyond...

 

 

cuz i have been suffering this pain MOST of the year...with not ONE pain med from a doc....not...ONE..

 

so what do i do? what a lay person CAN do....4 benadryls a day on average, motrin, aspirin....maybe i should do weed next...

 

THAT would get their attention wouldnt it.....heheh.

 

like screaming Fire in a theatre...there MUST be a catch phrase....to stop the presses

[cyclinglady]

How about contacting this group?

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[irish11]

thank you so much for that link...i will tool around it now...

 

ya know?  I just read the lil thing on the net for my hmo dermo...who has never done it...that they want to send me back to tomorrow..

 

it says...he only does SHAVING biopsy....isn't this supposed to be a PUNCH biopsy for the best result.

I really want to cry.  seriously? He prob doesnt even know HOW to do a punch, although the sites say its easy to learn...

 

no wonder he never called or discussed anything...he thinks hes shaving  it...and not getting all the layers of skin.

I really feel i cant go now....i was hedging....but what IS this?.....

[cyclinglady]

Look, I think I mentioned this before...I was diagnosed (no DH) last year, but my husband went gluten free per the mis-guided advice of my allergist and his GP. He did it. His symptoms went away. Ate gluten accidentally and all his symptoms would return. He has been gluten-free for 13 years.

Does he wish for a diagnosis? He says that I have received more support from family and friends, but he refuses to do a challenge. We both know he gets pretty sick from gluten. To keep it simple we just tell folks that he has celiac disease.

Can you not simply go gluten free and get relief?

My dx just insures (maybe) gluten free food in a convalescent hospital. By then, I probably will not care! My only symptom was anemia caught by a GI when I went for a routine colonoscopy. I have been anemic all my life and no one caught it. I really needed to get a definite dx because I could not believe it -- especially since my hubby had issues with gluten. What are the odds that both of us would have it?

The only benefit of my dx so far is that I can make sure my kid can get tested and thus avoid many complications of this disease.

If I had physical proof and I got the run around you have been getting, I would go gluten free. Done.

In the meantime, use some cold compresses. I hear that they are helpful and NEVER eat at restaurants. The risk from a glutening is far greater when you have DH.

[cyclinglady]

thank you so much for that link...i will tool around it now...

 

ya know?  I just read the lil thing on the net for my hmo dermo...who has never done it...that they want to send me back to tomorrow..

 

it says...he only does SHAVING biopsy....isn't this supposed to be a PUNCH biopsy for the best result.

I really want to cry.  seriously? He prob doesnt even know HOW to do a punch, although the sites say its easy to learn...

 

no wonder he never called or discussed anything...he thinks hes shaving  it...and not getting all the layers of skin.

I really feel i cant go now....i was hedging....but what IS this?.....

You have done the research. Print everything off and present it to him in a nice way......

[irish11]

Thank you cyclinglady:)  you are really too kind to respond to me.....i'm thinking of doing that...unfortunately i think it means ANOTHER 40 buck copay to find out he cant do it...lol....and these are the guys acting like they care about ethics.

 

Altogether since april....lessee...two trips to primary.....4 trips to hmo guy.....1 trip for second opinion....2 trips for guy who DOES know about it from a orange county research facility (you can guess but i dont want to be sued now)...back to this guy

 

the hmo visits were like 40 bucks, same for mission viejo guy...primary was about 20 i think....."intelligent" doc...yeah, a lot more....to tell me WHAT to do but not do it...

 

so all toll.....counting a years worth of benedrils, motrins, aspirins,  yeah ethics my butt....i have ALREADY spent.....

 

well....more than i should have.....and all i care about is GETTING OFF GLUTEN at this point...so yeah cyclinglady....u r right.

 

ultimately, i know what to do...i just have to do it....i guess im just mad is all..

 

did you see my long explanations on the other thread?  i am so tired right now i dont remember...lol...but thank you for all the advice and just caring:)

 

my other thread was under the Dermatitis hepetiformis category.....

[cyclinglady]

I did read them and I completely understand your frustration.

We are self-employed and pay $24,000 per year for our health insurance premium and that does not include co-pays, etc! But I am thankful to even have insurance!

Just know that it takes time to heal. A lot of time.

There is a huge learning curve, but it can be done. You can get well!

[irish11]

By the way I WILL try the cold compresses......i have been self medicating this whole time...lol...

 

You give me courage...I still don't know what to do about tomorrow, i may just call the office first and say "hey, can you ask the doc what he is PREPARED to do on me?  is it scrape or punch?"  even though i kinda already know.

 

Cuz its like....all the sites say...if its NOT done right...then you get a false negative which...to non believing doctors says

"see? this patient is crazy"  right? yeah i know.  Trying to avoid that, and wondering if its better to not get a useless one , then a wrong one....i shall sleep on it:(

 

Thank you for listening...I'll be back here in a few days hopefully...have christmas plans.....although...cant wear the nice tops i want to...as i mentioned (sigh)....its what i can tolerate any given day and where the blisters pop up ya know?

[cyclinglady]

Merry Christmas!

[SFord54]

I suffer terribly with DH. I am 60 years old and the condition appeared about 2 years ago. I have seen several docs (2 PCPs, 1 allergist, 1 dermatologist) and have had a punch biopsy... but I agree that the docs are not well informed about the condition.  The punch biopsy came back as a staff infection, however, I now know that it was not done correctly. The punch was taken from on top of a skin eruption instead of along side of it so no wonder nothing showed up. Best thing to do is follow a strict gluten-free diet. I recently had a DH outbreak from cough syrup. I have to watch everything I put in my mouth.