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Just Received Letter From Derm...need Opinions.

Raven815

By Raven815
in Dermatitis Herpetiformis

Recommended Posts

Raven815 Rookie
Raven815
Posted

Hi everyone,

I recently posted about my visit to a derm who told me I didn't have DH and she refused to treat me for it. She did do a biopsy, though, and told me it would take 3-4 weeks for the results. I just rec'd a letter from her office and I don't totally understand what she is telling me except that she doesn't have a clue. I was hoping to get some expert advice from you folks. Here goes:

Dear Laura,

The routine H&E biopsy is back but the immunofluorescence biopsy that was sent to the University of Illinois is still pending and I don't expect a response for 2-3 more weeks.

The routine biopsy did not show any findings typical of dermatitis herpetiformis. Instead there were moderately dense collections of inflammatory cells around blood vessels with a moderate number of eosinophils and occasional neutrophils. This pattern is most typical of an urticarial or hive like reaction.

Finding the cause of such eruptions may be impossible.

As to any treatment, I am turning your case over to the University of Illinois with whom we have a contract. I will no longer see you in clinic but I will forward the results of your pending test to you when I receive it. You may wish to contact your primary care physician to initiate the referral to U of Illinois.

Sincerely,

Dr. Derm

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mushroom Proficient
mushroom
Posted

The immunofluorescent biopsy is the one which will find autoimmune antibodies which would be present in DH. The other does not have much relevance to your condition. I would say your dermatologist is admitting lack of DH knowledge and turning you over to someone who might know something about it, which is a good thing :)

Mom23boys Contributor
Mom23boys
Posted

If it were me, I would go to another derm. I could not trust a word she said.

I went to a local allergist and he kept telling me my anaphylaxis was a figment of my imagination. It didn't matter that tests by 2 other drs came up off the chart. Even my test at the nutritionist was enough to raise eyebrows. I can't go back. There is no trust.

To me, it sounds like your derm doesn't want you back either. Maybe you could get somewhere with your primary.

For our household we aren't seeing an official label. I know some want it but the primary person in question is also IgE allergic so he is not going back on wheat/gluten.

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

Raven, A lot of skin biopsies for itchy things come back rather non-specific but the immunofluorescence is what is important for diagnosing DH.

My biopsy was done the beginning of April and the testing of both the H&E and imm were done at the same time and I had the results a week later for both. I'm surprised to hear you have to wait 2-3 weeks, hopefully you will get some news sooner. If I remember my reading right, eosinophils DO show up in a dh biopsy. (I didn't have any in mine.)

Let me ask you this - have you had hives in the past and is your current rash anything like those hives? I have had hives and there is a definite difference between those and the rash I have had. The only thing they had in common was the horrible itching.

Are you near the University of Illinois? It seems like your doctor was such a bad fit for you it is a good thing she is dissing you. Maybe now you can see someone who knows what they are doing.

Like you, I was told I probably will never know the cause of my rash and most likely it was some allergic reaction. It is so frustrating, isn't it? If the doctors can't figure it out right away, they call it an allergy and be done with it.

Please ask her to send you a copy of the H&E report as well as the imm one.

Jane

Raven815 Rookie
Raven815
Posted
  • Author

Hi again,

Thanks so much for your responses. You all make me feel so much better. This is what I think I am going to do: I am going to contact my regular PCP so she is aware of everything that is going on. She is a wonderful doctor and I know she will not dismiss me. I am then going to pursue the referral to the University of IL (it can't hurt) and my husband can take me. If I don't get any satisfaction, I will then pursue a doctor who specializes in celiac. My Mother has celiac, so she has names of doctors or I will look for one on the internet.

Jane, I have NEVER had hives before. Also, my Mother gets rashes, too. She has been off of gluten for many, many years (about 30), so when she gets a flare up, it's usually centralized in one area.

I don't care what any doctor says. I believe in my heart that this is what I have. I have been eating gluten free for almost three weeks now and it seems like the rash is slightly better. I have lost about 11# just since going off of gluten and if I could get a full nights sleep, who knows how good I would feel. I know they can't test me if I am off of gluten, but I doubt that I will want to go back just for a dx.

Laura

squirmingitch Veteran
squirmingitch
Posted

Yes, the unbelievable, unbearable discomfort of dh prevents so many of us from getting a dx b/c there's no way we are going to go through aggravating dh in any way, shape or form. DH will certainly cure one of eating gluten! No doubt about it.

Raven815 Rookie
Raven815
Posted
  • Author

If I don't want to even consider going back on gluten for a dx, should I even bother going to the UofI for follow up?

Laura :huh:

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squirmingitch Veteran
squirmingitch
Posted

That is entirely up to you --- your call. But if gluten-free is making you feel better & the rash is calming down some (don't expect immediate miracles with it) then I see no reason to go for an official dx as long as you are comfortable being self dx'd. Most of us are self dx'd out of self preservation!wink.gif

Raven815 Rookie
Raven815
Posted
  • Author

Thanks, Squirmingitch! I'll have to think this through. The rash does seem to be calming a little bit. I think I'll just continue on this road and take things as they come. It will be a long process to get the referral to U of I anyway.

Laura

squirmingitch Veteran
squirmingitch
Posted

You know; you might just go through with the referral if it's not a long trip to the U of I & that way you will be on record there & they will have seen you & then if you ever need to go again for something you will already be "in" so to speak.?????? Sort of like not burning your bridges. I always like to have a hold card.tongue.gif

mushroom Proficient
mushroom
Posted

Sort of like not burning your bridges. I always like to have a hold card.tongue.gif

Wise girl!! Life is a bit like a game of bridge; and it is always nice to have a trump left in your hand :) Keeping your options open for as long as possible will usually allow you to make the best decision available.

squirmingitch Veteran
squirmingitch
Posted

Great minds think alike shroomie!laugh.giflaugh.giflaugh.giflaugh.giflaugh.gif

Di2011 Enthusiast
Di2011
Posted

I'm with our great (and mostly officially un-diagnosed) posters above :) Stick with the referal to the Uni. Take lots of photos (LOTS of them) starting right NOW. And keep taking them as lesions appear, change, and heal. You seem to be in your early days so photos might tell a thousand words. Write a novel if you have to of your history and current diet etc. Food diary etc. Perhaps the Uni will be a bit more progressive in terms of there admitted understanding of DH.

I will never be diagnosed because I can never go backwards. You wouldn't wish what many of us have been through on the ANYONE let alone yourself. But hopefully my son's current journey will speak to someone in photos when I can afford the medical bills. You are in relatively early days of gluten-free DH so perhaps the Uni can help. Perhaps you attending the Uni can help all of us?

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