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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Haugeabs
      - Haugeabs replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil. Gluten free but not certified gluten free. Soy free, GMO free.
    2. trents
      - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even...
    3. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      23

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    4. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    5. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    Donna Shields
    Newest Member
    Donna Shields
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Haugeabs
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Haugeabs · Posted

      For my Vit D3 deficiency it was recommended to take with Vit K2 (MK7) with the Vit D. The Vit K2 helps absorption of Vit D3. Fat also helps with absorption. I take Micro Ingredients Vit D3 5000 IU with Vit K2 100 micrograms (as menaquinone:MK-7). Comes in soft gels with coconut oil.  Gluten free but not certified gluten free. Soy free, GMO free.   
    • trents
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By trents · Posted

      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
×
×
  • 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.