Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Went To Derm Today And Got Biopsy

Flasaltwater

By Flasaltwater
in Dermatitis Herpetiformis

Recommended Posts

Flasaltwater Apprentice
Flasaltwater
Posted

I don't think her and I were on the same page. I really am not sure she was even listening to me. looked me over everywhere and I mean everywhere. then she ran her hands up and down my arms not sure what the heck she was doing then she said we need to do a biopsy. OK I'm thinking this is great I didn't have to suggest it. So she asked me where the newest place is I told her the newest is on my leg she said no that tissue is to thick, OK no problem. Then she said let me see your back OK no problem but I told her those have been there for about 3 or 4 weeks they are pretty dried up so she biopsy's that area anyway and I cannot tell if she did it on a sore or just next to one. I do think she did it on a sore I saw what she put in the little jar it looked like a an old piece of dried skin. She did ask how long I had been anemic I told her I had been for 15 yrs that I know of. So I asked her what the biopsy is checking for she said everything. Then she said she needed to rule out some sort picking thing, I have no idea what this lady is talking about.

What is the sore picking thing? I think it started with a Ph or something. I'll call in the morning and ask I have to give them a pharmacy to send my script out she is giving something for itch. Now the spot where they Biopsy's its itching like the devil.

Sigh!!!

Pathology results back in 10 days

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Well, did you ask of everything includes DH? I ask because it isn't a standard test.

Did she say she thinks you're Dermatillomania?

Does she know you're celiac and does she know you want to be tested for DH?

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

Well, did you ask of everything includes DH? I ask because it isn't a standard test.

Did she say she thinks you're Dermatillomania?

Does she know you're celiac and does she know you want to be tested for DH?

I told her I have a close relative with celiac's and at the advice of a family member I am 4 weeks gluten and wheat free. I also explained how much better I feel since removing from my diet and that my skin is clearing up except when I eat something with iodine. Her assistants response to that was maybe I'm allergic to iodine. I don't think they were taking me serious. I don't remember what she called what she wanted to rule out I'm asking again in the morning so I can write it down. She what ever it is she did say they see it a lot in people with mineral deficiencies. She definitely used the term picking though. But she did not say Dermatillomania. When I go back in 10 days depending what the results are Im asking for another biopsy and this time I want one specific to DH if its not included in this one.

pricklypear1971 Community Regular
pricklypear1971
Posted

I've learned to not describe symptoms but to state what I want.

Then again, I also ditched MD's except for my Derm, who happens to be one of the most compassionate people I've met. I've kissed a lot of frog MD's to arrive at him, and my NP.

Keep on pushing. You'll get there. You can always find a great derm in Tucson :).

pricklypear1971 Community Regular
pricklypear1971
Posted

Also dont be shocked that they don't know the link between DH and iodine.

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

Also dont be shocked that they don't know the link between DH and iodine.

Yeah I kind of got the impression that they were looking at me like I had 10 heads.

pricklypear1971 Community Regular
pricklypear1971
Posted

My derm, as much as I like him didn't recognize my DH or associate Hashis with gluten. And hey, it may not be DH - it may be some other freaky rash that responds to gluten and iodine withdrawal. I'm rolling my eyes..... I must give him a pass - he asked over and over if I noticed patterns in what I ate...and I didn't but that's another story.

He did know I was having an autoimmune reaction and he couldn't treat the resulting rash with the regular things - corticosteroids, etc. because my body wouldn't tolerate it.

I can say he and his staff went beyond the norm to work me in when I woke up covered in a rash, and he always called back when I reported that I was stroking the furry wall (must see Get Gim To The Greek) and he'd talk me it through and try another med to calm it down.

He also agreed i need a doc who knew about autoimmune stuff andwould take time to work through it. He didnt poo-poo me when i found my NP and told him about it. He was open when i told his staff about what i wanted biopsied and needed to know if hed done it before, and he was supportive when i told him i was gluten-free and starting iodine withdrawal.

He also agreed we should wait til I poisoned myself unintentionally for the biopsy :), and agreed to work me in during the first 48 hours.

And this post is so long, and my phone screen so small that I can't read what I said in the beginning and now I've lost my train of thought.,,

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

From what you have said I doubt you are going to get a DH diagnosis and I would be surprised if the biopsy was done correctly or if they were even looking for it.

You may find it helpful to print this out and bring this in with you and make her read it in front of you. It is from the NIH Celiac Awareness Campaign and will tell the derm how to do the biopsy correctly. If they are not looking for DH they won't find it.

Open Original Shared Link

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

From what you have said I doubt you are going to get a DH diagnosis and I would be surprised if the biopsy was done correctly or if they were even looking for it.

You may find it helpful to print this out and bring this in with you and make her read it in front of you. It is from the NIH Celiac Awareness Campaign and will tell the derm how to do the biopsy correctly. If they are not looking for DH they won't find it.

Open Original Shared Link

Well her and I are going to have a little chat when I go back when I siggested she biopsy near the one on my leg which is the newest and she refused. I knew I was not going to get anywhere with her. Now I have a stich on my back with a fat bandage that is itching the bejesus out of me since yesterdy.

pricklypear1971 Community Regular
pricklypear1971
Posted

It's amazing to me that NIH document is so narrow re: DH locations, and doesn't mention low-iodine diet.

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

I just got off the phone wiht the nurse I told her I need her to look in my chart and tell me exactly what the Dr is trying to rule out and she told me Prurigo whatever this is. I have not had time to look this up since I am at work but took a little time just to post this real quik.

ravenwoodglass Mentor
ravenwoodglass
Posted

It's amazing to me that NIH document is so narrow re: DH locations, and doesn't mention low-iodine diet.

I agree completely but at least it does tell doctors how to do the biopsy and the test. Since it is the NIH most doctors will at least read it...hopefully.

pricklypear1971 Community Regular
pricklypear1971
Posted

See link.

Open Original Shared Link

One differential is DH.

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

See link.

Open Original Shared Link

One differential is DH.

Sorry not to seam stupid but what exactly does this mean?

pricklypear1971 Community Regular
pricklypear1971
Posted

Well, the link is to info about Prurigo. A differential is a suggested alternative diagnosis.

Flasaltwater Apprentice
Flasaltwater
Posted
  • Author

Well, the link is to info about Prurigo. A differential is a suggested alternative diagnosis.

Since she thinks I have prurigo do you think that they might be testing for DH??

pricklypear1971 Community Regular
pricklypear1971
Posted

I doubt it with one sample. DH is a specific test. I don't know if it's compatible with the other. Call again and ask.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,805
    • Most Online (within 30 mins)
      7,748
    lovinlifeafter60
    Newest Member
    lovinlifeafter60
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.