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Another Doc, Another Wait...grr!

mamat78

By mamat78
in Dermatitis Herpetiformis

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mamat78 Apprentice
mamat78
Posted

So for those who know my story...I finally got into a derm and he wants to wait for "fresh" leisions before doing a biposy. So, the wait goes on. 

 

What he said was...yes, he thinks it could be DH by the look of it but based on blood results, it isnt pointing in that direction. I argued with him on this point and said that a neg blood screen does not mean neg celiac. So for now, he gave me a prescription for a really strong cortisone cream to try. I am reluctant, though, after reading some posts her that the steroid will affect a biopsy result...so for now, I am going to see what happens and wait for a new outbreak. The one I have had for almost 6 months is still extremely itchy but doesnt seem to be spreading anymore. Maybe on the tail end of its long long cycle? 

 

Any suggestions as to where to go now?? 

 

 

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1desperateladysaved Proficient
1desperateladysaved
Posted

I hope you get some definitive answers soon. 

Diana

pricklypear1971 Community Regular
pricklypear1971
Posted

Yes, move on with a gluten-free lifestyle if you think it's DH. See what happens.

If it is dh it will likely flare again. Then get your biopsy.

Sometimes we can't get answers - or the only answer we get is the one we give ourselves.

squirmingitch Veteran
squirmingitch
Posted

I don't remember your story really. And I'm not quite sure what you're asking. If you want a dx then you would have to continue eating gluten & wait for a new, fresh outbreak & get it biopsied b/c when you're gluten free the biopsy will be neg. Yes, the steroid creams will make a dh biopsy neg. Soooooo.......

You can go gluten-free now & forget getting an official dx or risk continuing to eat gluten to get a new outbreak for a dx but you may live with the dh outbreak longer than you ever thought by going that route. And a new outbreak may just be the one that's sends you over the edge into hell.

((((HUGS))))) 

mamat78 Apprentice
mamat78
Posted
  • Author

I don't remember your story really. And I'm not quite sure what you're asking. If you want a dx then you would have to continue eating gluten & wait for a new, fresh outbreak & get it biopsied b/c when you're gluten free the biopsy will be neg. Yes, the steroid creams will make a dh biopsy neg. Soooooo.......

You can go gluten-free now & forget getting an official dx or risk continuing to eat gluten to get a new outbreak for a dx but you may live with the dh outbreak longer than you ever thought by going that route. And a new outbreak may just be the one that's sends you over the edge into hell.

((((HUGS))))) 

That is my fear...waiting for a new outbreak just to get at dx? I am not sure I am wanting that as this outbreak is going on almost 6 months and just starting to maybe die down. 

My story, in a nutshell, is that I have had what I think is DH for several years now and it is getting progressively worse and seems to take longer to get rid of each time...got a blood screening which came back negative...got a swab on the skin, all those tests neg to the things she tested (hpv and cold sore virus). 

Was on dapsone for 10 days which was starting to work for the outbreak but after 10 days, my body rejected the dapsone and I had to get off of it. Bad reaction. Put me on topical dapsone (meant for acne) and that definately subsides the itch but has not cleared my skin. 

 

My decision to make...

do I leave my skin free of steroids, dapsone etc so that I can wait for an outbreak to get a biopsy.

 

do I try the strong cortisone cream and risk interfering with a biopsy but maybe have cleared up skin? 

 

Do I say forget the dx and go gluten free for 6 months and see how my skin is based on that??? 

 

This is where I am at right now. I am going to decide by the start of the new week. Right now, I am so busy at work and with my kids I am eating like a single university student right now...on the fly by! I will need to decide and move forward very soon 

squirmingitch Veteran
squirmingitch
Posted

Ah! I remember you now that you jogged my memory.

You of course need to make your own decision. And you have laid out your options & have done your homework so you are well informed.

Having said that.........

I will say that for me, if I had known (that I had dh - DUH) years ago when it was in it's infantile stages & very mild & known how horrid it could/would get...... I would have gone gluten free & never looked back. But hindsight is 20/20. And I had no idea I had dh --- none at all. 

Knowing what I know now; I would not eat gluten for one more day than I had to in order to prevent any further build up of antibodies in my skin. As one doctor said, "The antibodies are little bombs sitting under the skin waiting for something to set them off." And boy oh boy when that happens they don't stop for a long, long, long time. I am 17 mos. super strict gluten-free & still suffering. My legs from the knee down & my feet are a total wreck. Blisters, rash, oozing lesions, itch, sting, burning, traumatized skin, swollen skin from the trauma, bleeding at times. It's almost impossible to wear shoes. Thank goodness I live in the deep south & can now make flip flops my shoe of choice with the warming weather. And even flip flops irritate. I only wear them when I absolutely have to.

mamat78 Apprentice
mamat78
Posted
  • Author

Ah! I remember you now that you jogged my memory.

You of course need to make your own decision. And you have laid out your options & have done your homework so you are well informed.

Having said that.........

I will say that for me, if I had known (that I had dh - DUH) years ago when it was in it's infantile stages & very mild & known how horrid it could/would get...... I would have gone gluten free & never looked back. But hindsight is 20/20. And I had no idea I had dh --- none at all. 

Knowing what I know now; I would not eat gluten for one more day than I had to in order to prevent any further build up of antibodies in my skin. As one doctor said, "The antibodies are little bombs sitting under the skin waiting for something to set them off." And boy oh boy when that happens they don't stop for a long, long, long time. I am 17 mos. super strict gluten-free & still suffering. My legs from the knee down & my feet are a total wreck. Blisters, rash, oozing lesions, itch, sting, burning, traumatized skin, swollen skin from the trauma, bleeding at times. It's almost impossible to wear shoes. Thank goodness I live in the deep south & can now make flip flops my shoe of choice with the warming weather. And even flip flops irritate. I only wear them when I absolutely have to.

wow, that sounds bad! I know that I have flare ups that are worse than others but it seems that when they come, they stay for what feels like forever and lately, it seems like longer each time. I need a bit of time to make a decision as to whether or not the dx is really important to me. I think for piece of mind, it is but really, for all the waiting, it may not be worth it. 

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mamat78 Apprentice
mamat78
Posted
  • Author

So tonight I at spagetti for dinner...I want to chop my legs off. There is no doubt in my mind I need to quit eating gluten. In saying that, the derm that I saw last week phoned and wanted a new celiac blood panel done. Not sure why. I just had one done in march and it was negative. 

 

I also see my gp next week and am going to look into a few other things...one thing is whooshing tinitis. I have had that for 2 years and am just making the connection to possibly be b12..I had a flag on my last blood work as well which was  a low distribution width due to a lack in variation of red blood cells...another link to b12 deficiency. Maybe I am looking into things too much but man, I would like an answer! 

 

 

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