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

Skin Biopsy Results

pikkulintu

Recommended Posts

pikkulintu Rookie
pikkulintu
Posted

Well I had my appointment with my dermatologist this morning to get the results of my biopsies which came back as...an insect bite reaction - which I am not buying but she didn't want to hear it. Even though I said I found it hard to believe an insect bite would produce hundreds of ongoing lesions (3 months and counting) which ALWAYS flare up after I eat gluten.

While checking my lesions she did note how many had appeared since she saw me about 10 days ago and also noted my severe keratosis pilaris. Her comment? 'Gee, you must have sensitive skin.'

 

I asked her if the biopsies were taken from the skin next to the lesion (as requested) or from the actual lesion and she said from the actual lesion! I asked her to redo the biopsy from the clear skin next next to a fresh batch of blisters that had erupted this morning to test for IgA deposits and she refused saying I'd be wasting my time and it wouldn't show anything.

She recommended a strong steroid cream to help with the rash but I refused the treatment saying that I wanted further testing and I knew that steroids would interfere with the results. She told me I was wrong and that the steroid cream would be harmless.

She then proceeded to give me handouts on insect bites that she printed off google (!!!).

She could tell I wasn't happy about the diagnosis and about her refusal to do further biopsies and at that point I just wanted to get out of there.

As I was about to leave she told me that the rash I had wouldn't kill me and compared to other people it was quite mild so I shouldn't worry. It's ok for her to say that. She's not dealing with the constant itching that makes me want to tear my skin off and is not letting me get a good night sleep.Or when I have to excuse myself whenever I'm out to run to a bathroom to relieve the itching.

 

I'm unsure of what my next step should be. This was the 4th doctor I'd seen about this rash and while I'm really, really tempted to quit eating gluten now maybe I should continue with testing? I'm thinking about seeing a naturopath or a dietition but unsure if this would be helpful?

 

Argh! Back to square one.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Have you had a full celiac panel? If not request one from your GP or Interist. There are false negatives but it would still be a good idea. If you should decide to get a second opinion from a different derm do go to the NIH website and print out their instructions for testing for DH. It would be a good idea to also send a copy to the clueless derm you just saw. Don't know if it will even get read but might help someone else. If your derm is part of a group also find out who the head of the organization is and perhaps send a letter detailing your issues with this doctor along with a copy of that NIH printout. This suggestion might seem a bit extreme but I have DH and went through years of useless misdiagnosis while I got sicker and sicker. Kind of left me a bit PO'd about their ignorance. 

squirmingitch Veteran
squirmingitch
Posted

I agree completely with what Raven said.

Here's a link to pathology instructions for a dh biopsy as well as other skin biopsies for different things. 

Open Original Shared Link

You can print it out & highlight the pertinent parts & send or take to derms past & future. 

pikkulintu Rookie
pikkulintu
Posted
  • Author

My GP suggested I get the blood test done before I saw the derm and the results came back negative. However when I was going through the results myself I saw they only tested me for 2 markers instead of the full blood panel which really annoyed me.

I've made an appointment to see an integrative dietician next week who I'm hoping will be able to help me. I can't believe the resistance from conventional doctors who openly admit they can't give me any answers yet are unwilling to further explore the possibility of dh and celiac even when I go through my loooong list of symptoms.

Thanks so much for that document of pathology instructions. I'll be sure to have a read and print them off. I can't wait until I finally get to the bottom of this and I can ring all the doctors who pulled random diagnoses out of there you know what and say 'in your face!'

I really feel for all those who struggle for years to get anywhere with doctors before they get a diagnosis I'm only 3 months into this journey and i'm already over it.

squirmingitch Veteran
squirmingitch
Posted

You're welcome! I hope you can get a resolution but you may just have to go gluten free without an official dx. So many of us do because we can't take the destruction to our bodies any longer.

The riot is that I got a dh dx AFTER I had been gluten-free for a long time. What a riot eh? I didn't even go to the doc for that; I was there for something else but had been to the same one twice for the rash prior to going gluten-free so he knew my story & had seen the rash & how long it had been going on. Based on what he had seen before & treated me for before & the results after I went gluten-free - he gave me a dx. I didn't even ask for one -- by that point i just didn't care about an official dx -- I knew it was dh & I had celiac and there was no doubt about it. So go figure. But me getting that dh dx after the fact is a one in a million, maybe one in 2 million, thing. 

Archived

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

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


  • Member Statistics

    • Total Members
      131,952
    • Most Online (within 30 mins)
      7,748
    SY8
    Newest Member
    SY8
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.