• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

To Anyone Looking To Get A Dx Of Dh (A Skin Biopsy)
0

9 posts in this topic

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. 

 

 

1

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Absolutely correct Georgia_guy!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,802
    • Total Posts
      932,558
  • Member Statistics

    • Total Members
      64,294
    • Most Online
      3,093

    Newest Member
    Alisha Patel
    Joined
  • Popular Now

  • Topics

  • Posts

    • You're right on the extremes, I'm sitting in a gluten-free food festival right now and still unsure if to eat anything which I guess means I've hit the extreme end of the scale. Seem to be noticing the recovery pattern over the course of 6 weeks or so after a gluten hit. Will be very interesting to see what the blood test readings come out like when I eventually get them done again. And thanks for the good wishes
    • Your getting plenty of proteins for once and I would drop the L-glutamine supplement what brand is it? Paleo Protein as in the brand? They were not gluten free last I checked, I got sick from it 2 years ago or so when they changed to a non dedicated facility.
    • Very interesting. However, my positive on the DGP test is on the combined assay. When separated into IGA and IGG they are within normal range. Twice the IGA was a point or two above normal range, which can be easily disregarded per University of Chicago.  Much of the research done on NCGS is showing activation of cells which are different then in celiac. Placing it still in a gluten related illness spectrum, but an entirely different kind of mode of transport, if you will, then celiac disease. Odd, because I am pretty sure I read that 1st degree relatives of celiacs have a higher prevalence of NCGS suggesting it is, in part, that they are related. But I cannot recall where I read that.  I think my specialist doc is following the right track given that all of this began at the tail end of a 6 week challenge in 2015/16 and I have an increase in IELs.  which, as I've stated before, is a very non-specific finding however. Symptoms continued On a gluten free diet for me months after.  however I was only on it for that 3 months after they found some inflammation. So maybe I didn't give it long enough.  Or like I said, maybe it's something else. We shall see! 
    • Thank you for your replies, everyone! It was very helpful. I don't think I am comfortable with passing the whole gluten introduction diet again and getting that rash. Or, even getting the rash on my face flared up again. It actually might be a good thing I got 'glutened' at that bd party so I could finally make connection with all the symptoms. As I thought back about my 'allergy' rashes I start wondering if it could be related to gluten all those years but no one even suspected. For example, at some point I started getting itchy rash around my knees, spreading down to ankles (front of the legs) in summer. The dermatologist and GP said it is 'sun allergy'. The usual allergic treatments helped for the itch and the patchy scales slowly healed but it flared up on the same place during the summer multiple times. The strange thing is that it never flared up when I went hiking, or walking in the sun in the city (I have extremely low vit D levels and I need to supplement, so it was no-no to stay completely covered no matter the rash...I needed my natural vit D). The rash only appeared after beach visits. At some point I started washing and drying my skin with a towel every time I went out from the sea, the rash still appeared but I was able to control it so it showed up on day 4-5 when vacation was almost over. Then, last summer after I was completely gluten and dairy free for approximately 9-10 months, and I was annoyed of washing my skin each and every time and getting those weird looks on the beach, I stopped doing it. I was prepared with medicine and creams for that rash but guess what - my 'sun allergy' was mysteriously gone. Not a single blister, not a patch of itchy skin, nothing. Another 'allergy' case of mine is that I found from my own bad experience I got very bad rash from red dyes (in food or cosmetics). If it is food it shows on my face, if it is cosmetics (soaps, perfumes)...whenever I applied it. I am now reading that people with dh should stay away from red dyes. Mere coincidence? I don't know, I am more and more suspicious I could have this DH thing going on for years, if that is DH. I am just annoyed that all the dermatologists I went to during all those years never made connection. No one even suspected. It was the usual path - cortisone creams, pills, etc. At some point cortisone creams were no longer working so they started prescribing some mixtures made in the pharmacy specifically for me with sulfur. That worked like a charm but I couldn't walk around all covered in white cream looking like a mummy (long sleeves in summer here where I live and summer = 35-38 C, is not fun). Then, I tried homeopathy....it worked like a charm but of course those rashes kept appearing and disappearing, I was only able to control the itchy skin so I don't scratch, scratch, scratch...looong, long journey! Sorry about my rant...and, one more time thank you everyone who found the time to reply and share your opinion! Much appreciated!
    • Found this old thread when researching for my daughter who might be having an endoscopy in September. I'm curious to know what the results were?
  • Upcoming Events