Had Skin Biopsy Today

[bookmama]

Hello,

I had my much anticipated derm appt today. She did not perceive the rash to be DH related, as it is not the "classical" presentation. ( Big blisters on the the normal areas.) I know, anecdotally from reading that that is not true. She took a biopsy from my back (ouch) in a rashy area. Would not consider, at this time, taking a sample also from a clear area.

Now, every one knows that one does not want to have celiac, but if one has it, one wants to know, right? And will feel better on a gluten-free diet.

Well, I will get the results in two weeks, I just hope that a negative result doesn't steer her in another direction.

In the meantime, my rash peaked last week, was getting better, but I have a few more itchy spots today. But that is a topic I will address in a different post, as I experimented with Iodine.

Julie

[dhd2000]

I hope you get some answers! I agree that the not knowing is the worst.

Dee

[RiceGuy]

I've read that if the biopsy is taken on a rash spot, the results will likely be inconclusive. Apparently it needs to be near one, but not on it, to be most accurate.

[Alona]

My derm took 2 biospies when I asked from one from clear skin. He said he would, but I think he took both from the rash. One was tested for DH one a general skin testing thing. The results were negative for DH and they said the other came back consistant with atopic-dermatitis. My skin was looking quite good on a gluten-free diet and when I tested it out by eatting cake I broke out in a blistery rash (on my hands) the next day. It is still possible the atopic is caused by food (milk, eggs, peanuts, wheat, soy), though my derm's nurse dismissed that idea at once.

If being gluten free is making you feel better and giving you relief I'd say keep doing it... I am and on Friday I think I will test it out by eating a bunch of wheat to see if my skin breaks out again. If it does I will see an allergist

Good luck to you!

[nikky]

I agree with the previous poster, if your doctor wont listen to you and insists on going against DH without testing a clear patch then either get another dr. or test is yourself (i.e go gluten free for a bit- if it clears up then theres your answer).

Its terrible not knowing, i had nearly a year of that, it was so frustraring especially when my tests conflicted each other (for coeliac, i dont have DH).

[RoseTapper]

I would urge you to see another dermatologist. The one you are seeing obviously is not "up" on how to correctly biopsy DH lesions, and if he thinks that your lesions are not consistent with his understanding of where they should be, he is obviously not an expert. DH can appear anywhere, but the limited amount of information on DH in medical literature can be incorrect, misleading, and outdated on this issue. Your dermatologist should not have biopsied any of the lesions; to do so would result in a "negative" outcome. The correct way to biopsy for DH is to take skin NEAR a lesion.

[Fiddle-Faddle]

If you are already gluten-free, the biopsy will be negative, anyway.

[Alona]

Nah, I've read it can take months for the IgA to get out of your skin. I have heard someone say you need to eat gluten for 6 weeks before your test, but I've never read where an actual Doctor has said that.

[Fiddle-Faddle]

Well, take it from the experience of people who have lived it, then--most of the doctors haven't been through it themselves. They are only spouting what they were taught in medical school about celiac, most of which was WRONG.

Most of us on here have been told BY DOCTORS that:

celiac is rare (FALSE)

all celiacs will have totally destroyed villi, very easy to diagnose on biopsy (FALSE)

just because you have DH doesn't mean you have celiac (FALSE)

you can outgrow celiac (FALSE)

a little bit of gluten now and then won't hurt (FALSE)

you don't need to be eating gluten for bloodwork/biopsy to be valid (FALSE)

the gluten-free diet is too hard (FALSE)

I'm not saying that there are NO good doctors out there! But unfortunately, a huge proportion of us have been given seriously wrong info about celiac BY DOCTORS.

Even the so-called "experts" on celiac keep citing the intestinal biopsy as being the gold standard, which is ridiculous. It's like using a heart attack as the gold standard of diagnosing high blood pressure. The biopsy only shows late-stage celiac, after years and years of damage.

Sure, it's possible that it would take months for IgA to get out of your skin. But it's not likely. Think how quickly a cut on your skin heals--a matter of days, not months. Within a few weeks, even a fairly deep cut is gone from view, and replaced by new skin.

The tests would NOT be valid if you are gluten-free, because it's the gluten you eat that causes you to produce all those anti-gluten antibodies. And it's the gluten you eat that causes intestinal damage and leaky gut, which can heal quite quickly on a gluten-free diet.

Once you have healed, measurable damage can take 2-4 months, or even longer.