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

[squirmingitch]

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. 

 

 

[norahsmommy]

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]

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]

Absolutely correct Georgia_guy!

[1desperateladysaved]

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]

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]

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.

[Chefwife8]

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

[Lobstah]

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.