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

To Anyone Looking To Get A Dx Of Dh (A Skin Biopsy)


squirmingitch

Recommended Posts

squirmingitch Veteran

Please document your rash in photos, print them out & take them to the derm @ your appt. The rash may not look like your photos or be flaring when you see the derm. You can't rely on just telling the doc what it looked like, you need to show them!

 

Do NOT get a biopsy if you have taken oral steroids or used topical steroids in the past 2 months.

 

DO NOT go gluten free or even gluten light until AFTER the biopsy has been performed. 

 

 


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



Celiac.com Sponsor (A8-M):



norahsmommy Enthusiast

Good to know about the steroids. We occasionally use hydracortisone cream on our daughter. I haven't for about 3 weeks because I was actually hoping her rash would be really bad ( horrible I know) when she went to the doc so they would take me seriously.

Georgia-guy Enthusiast

I want to add to wait until AFTER RESULTS ARE BACK AND A DIAGNOSIS IS MADE to go gluten free or gluten light. Just having the biopsy done (or the endoscopy or blood tests as well) does not mean it will give a definitive answer. The doctor may want to supplement a test with another one, or the results may not be conclusive and they may wish to redo a test.

squirmingitch Veteran

Absolutely correct Georgia_guy!

1desperateladysaved Proficient

Is it true you need to do the biopsy on a fresh patch?  I whisked one daughter in to have her rash tested right away.  I was told you can test the rash ANY time.  I also was told that Celiac Disease is a GI DISEASE!  We were told to put lotion on her "dry skin".  During the day it did rather look like dry skin,.  It looked like eczema in the evenings.  In the end the rash appeared to be a reaction to the soap in a school's bathroom.  I still haven't looked to see if it contains wheat germ.

 

Later,  I then printed off some information I found from this sight and mailed it to the doctor.  It showed 300 symptoms of celiac.  Many of the symptoms were not GI related.

squirmingitch Veteran

Is it true you need to do the biopsy on a fresh patch?  I whisked one daughter in to have her rash tested right away.  I was told you can test the rash ANY time.  I also was told that Celiac Disease is a GI DISEASE!  We were told to put lotion on her "dry skin".  During the day it did rather look like dry skin,.  It looked like eczema in the evenings.  In the end the rash appeared to be a reaction to the soap in a school's bathroom.  I still haven't looked to see if it contains wheat germ.

 

Later,  I then printed off some information I found from this sight and mailed it to the doctor.  It showed 300 symptoms of celiac.  Many of the symptoms were not GI related.

Not ON a fresh lesion but ADJACENT to a FRESH lesion. You can NOT have a valid dh biopsy if you have been gluten-free or gluten light --- you have to be actively eating gluten for at least 2 months if you had been gluten-free or gluten light. If you have taken oral or used topical steroids in the last 2 months, you will get a false negative.

1desperateladysaved Proficient

Can you define "Fresh lesion"?  Also adjacent would mean right next to current sore?  Is that hoping that whatever caused the disturbance would be there also?  I would appreciate it if you know any answers.

 

My whole family would likely have to be said to be gluten light since no gluten is in our kitchen.  Quite possibly, though, at various times family members eat elsewhere frequently.


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



Celiac.com Sponsor (A8-M):



  • 7 months later...
Chefwife8 Newbie

ugh wish I knew about oral steroid and that it would effect results.

  • 2 weeks later...
Lobstah Rookie

Biopsies are one way of diagnosing.  I've been diagnosed, but never had a biopsy of a lesion done.

My understanding is that it must be taken adjacent to a lesion, and that this is one of the reasons that SO many tests come back negative...person doing the biopsy didn't know it had to be done beside, not IN the lesion.

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. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

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

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    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

    • Wheatwacked
    • Wheatwacked
      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
      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
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.