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

Biopsy result?


Jlewisrn

Recommended Posts

Jlewisrn Contributor

I had a biopsy on Friday but he biopsied the rash not the skin next to it. I know this is wrong when testing for DH but he said that's not what it is. Can anyone tell me if they had a biopsy of the rash before they knew what it was and what the pathology report said? He just called me and said it is a drug allergy. I only take one medication and I have been on it for several years. I also stopped taking it for several months and the rash didn't go away. How do they know this? Just based on what it looks like? Because the last biopsy said "atopic dermatitis" and she said it was eczema. So 2 different diagnosis same rash. Is one right? Us either of them right? 


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



Celiac.com Sponsor (A8-M):



apprehensiveengineer Community Regular

I've been told a lot of things over the years... from allergic dermatitis, to "sensitive skin" to ???? to acne. I have tried to no avail to get the skin biopsy, so take my statements with a grain of salt. I am fairly confident (as was the GI I saw recently) that I have DH as my outbreaks are always directly linked to GI distress from gluten ingestion, and come in discrete "batches" as opposed to continuously, as one might expect for the other conditions I've been purported to have.

Though there is some variability in the timeline, I will get GI issues within a couple of hours of eating something bad and a couple of days later the rash breaks through the top layer of my skin. It always hits the exact same regions, and I can usually tell where it's going to show up beforehand. It will take several weeks to stop bleeding/crusting and then a purple mark will appear on the healed skin for a few months. The treatments for the various other things I've been told it is are categorically useless or irritate it further. The only thing that has helped is a very strict version of the GFD (I essentially eat no processed foods) and avoidance of super high iodine foods (seafood).

I think in my case, the thing that has stumped all the doctors when I've suggested that it might be DH is that it isn't "textbook" in the sense that it isn't restricted to my stomach and elbows. Ironically, I have read a few dermatology textbooks and they all said that DH was highly variable in appearance and could appear almost anywhere, and that it commonly appears on extensor surfaces such as the elbows because these are high friction areas - the rash appears where the skin gets microdamaged and irritated. Most of them also cited locations such as the shoulders, back, buttocks and scalp as very common locations for the rash.

I guess the silver lining is that you don't "need" dapsone to fix the problem if it actually is DH, just a super strict GFD. But... I understand the frustration. Hope this helps?

 

Jmg Mentor
On 8/8/2017 at 5:23 PM, Jlewisrn said:

So 2 different diagnosis same rash. Is one right? Us either of them right? 

I had two different diagnoses of a rash in two consecutive visits. I get the feeling its not an exact science!

 

 

Victoria1234 Experienced
On 8/8/2017 at 0:23 PM, Jlewisrn said:

I had a biopsy on Friday but he biopsied the rash not the skin next to it. I know this is wrong when testing for DH but he said that's not what it is. Can anyone tell me if they had a biopsy of the rash before they knew what it was and what the pathology report said? He just called me and said it is a drug allergy. I only take one medication and I have been on it for several years. I also stopped taking it for several months and the rash didn't go away. How do they know this? Just based on what it looks like? Because the last biopsy said "atopic dermatitis" and she said it was eczema. So 2 different diagnosis same rash. Is one right? Us either of them right? 

I was biopsied in 2006 or 2007 the correct way and they called it dh. But no one told me anything about celiac then. It wasn't until I joined this board that, I think it was jmg, told me dh meant celiac diagnosis. 

Btw the rash presented on my elbow area and a bit down from that. First year or two of going gluten-free I knew I was sensitive to something as I got the itch, not the rash.

  • 1 month later...
Tina Morris Newbie

I suffered with rashes on my elbows knees and has of spine for years. The itching was intense and made me totally miserable. Rash started as large blisters which eventually popped and scabbed over.. Doctor prescribed every cream known to man and none worked. In the end I saw a new doctor who knew immediately what it was. One visit to the hospital and biopsies on the rash area revealed DH. I am registered Coeliac and now never eat  gluten and I never have problems. 

 

Archived

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

  • 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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    3. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Are Lindt chocolate balls gluten free?

    4. - Dorothy O. commented on Scott Adams's article in Latest Research
      7

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    5. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,405
    • Most Online (within 30 mins)
      7,748

    Kbradway
    Newest Member
    Kbradway
    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

    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
×
×
  • 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.