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Off prednisone.. rash returned

Jlewisrn

By Jlewisrn
in Dermatitis Herpetiformis

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Jlewisrn Contributor
Jlewisrn
Posted

I just finished 60 of prednisone and had a steroid shot before starting those. I came back from DC with the worst my rash has ever been. Let me first say that I have not been diagnosised. When my steroids started to taper to .5 tabs daily I stated itching. The day after I took my last tab I got a rash on my leg (this is where it always starts). I almost cried! I thought I have been so careful. I started reading the labels and found out the lindor chocolates I have been eating over Christmas have barley in them. I went back to the dermatologist who said it was eczema. The last time he saw me he said it was “absolutely not eczema”.:.: Mine looks compltey different at different times and like a completely different rash as time goes on. It can go from looking like eczema, tiny blister or hives at any given time and different areas on my body. My legs may look eczema one day and my stomach look like hives it seem to change which i think makes it hard to diagnosis. I wish I could get a real diagnosis. It’s not scabies, eczema or a drug reaction.. this is all so frustrating. It’s hard to cut gluten all the way out without a proper diagnosis but I guess There is no other choice. Did prednisone work for anyone else while they were on it? I have been trying avoid eat gluten but sometimes it sneaks in (like chocolate) while on prednisone 

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Victoria1234 Experienced
Victoria1234
Posted
2 minutes ago, Jlewisrn said:

I just finished 60 of prednisone and had a steroid shot before starting those. I came back from DC with the worst my rash has ever been. Let me first say that I have not been diagnosised. When my steroids started to taper to .5 tabs daily I stated itching. The day after I took my last tab I got a rash on my leg (this is where it always starts). I almost cried! I thought I have been so careful. I started reading the labels and found out the lindor chocolates I have been eating over Christmas have barley in them. I went back to the dermatologist who said it was eczema. The last time he saw me he said it was “absolutely not eczema”.:.: I wish I could get a real diagnosis. It’s not scabies, eczema or a drug reaction.. this is all so frustrating. It’s hard to cut gluten all the way out without a proper diagnosis but I guess There is no other choice. Did prednisone work for anyone else while they were on it? I have been trying avoid eat gluten but sometimes it sneaks in (like chocolate) while on prednisone 

Get a new dermatologist if this one won't biopsy the rash!

Jlewisrn Contributor
Jlewisrn
Posted
  • Author

I’ve had it biopsied twice. One showed atopic dermatitis the other showed a drug ereption. I can’t get anyone to boipsy for DH. 

squirmingitch Veteran
squirmingitch
Posted

If you don't stop getting glutened then you're going to continue to get the rash if it's dh. I'm sorry but trying to avoid gluten is not good enough; you absolutely MUST not eat any gluten. So you ate the Lindor chocolates without reading the ingredients. Bad move. We have a mantra:

READ EVERY LABEL EVERY TIME

And if you have dh, then you are celiac and that means every time you get glutened your villi gets damaged. 

Victoria1234 Experienced
Victoria1234
Posted
1 hour ago, Jlewisrn said:

I’ve had it biopsied twice. One showed atopic dermatitis the other showed a drug ereption. I can’t get anyone to boipsy for DH. 

What do they do when you ask? 

And they have to do it in a clear area next to the rash.

another thing to do is get the blood test. But you have to be eating gluten for 12 weeks at least for that. Unless you've already been dx? I'm totally confused by your post history whether or not you have been.

Jlewisrn Contributor
Jlewisrn
Posted
  • Author
3 hours ago, Victoria1234 said:

What do they do when you ask? 

And they have to do it in a clear area next to the rash.

another thing to do is get the blood test. But you have to be eating gluten for 12 weeks at least for that. Unless you've already been dx? I'm totally confused by your post history whether or not you have been.

They tell me it’s not DH. I have not been diagnosed. I’m sorry... I guess this post was confusing. Some HX 

I got a rash exactly 1 year ago. I was diagnosed with scabies at that time. Treated twice. That wasn’t it. I have been to 2 dermatologist, 2 allergists, and 2 natuapathic doctors. Only one dr (the natuapathic) said DH. She was sure of it after just one look. I have had 2 biopsies and have been on creams and pills and nothing works. I do good to avoid gluten lately but they sneak that crap in EVERYTHING!! I don’t know for sure that’s what it is. I don’t think I have given myself a good fair shot at eliminated it to find out for sure. I have had gut issues my whole life. I was always nauseated. When I was in high school I had my first episode of stomach cramps so bad I was on the bathroom floor about to pass out. Those cramps are deep and not menstral. They last about 3 days. I can’t tell if I need to have a BM i vomit. For 3 days I can’t stand upright and I feel like everything I’m my stomach is loose. It’s hard to explain. Before getting the rash I had no idea what the cramps were. When I was researching the cramps I came across celiac disease and wondered if it wAs all a piece of the puzzle. I would love to have an official diagnosis. I do know when I’m  not eatjing gluten my stomach doesn’t feel “crampy” and “loose” I thought it was carbs a while back ago but now I’m thinking it’s gluten. I do know that I do NOT want that rash to return. I consumes my life and I honestly think they may have to commit me if it comes back like before. It’s clearinf up now but I stopped eating the lindor chocolate and have been extremely careful 

 

Jlewisrn Contributor
Jlewisrn
Posted
  • Author
3 hours ago, squirmingitch said:

If you don't stop getting glutened then you're going to continue to get the rash if it's dh. I'm sorry but trying to avoid gluten is not good enough; you absolutely MUST not eat any gluten. So you ate the Lindor chocolates without reading the ingredients. Bad move. We have a mantra:

READ EVERY LABEL EVERY TIME

And if you have dh, then you are celiac and that means every time you get glutened your villi gets damaged. 

I have been so careful. Or so I thought. I’m not careful with some labels and just assume some things are “safe” I won’t make the mistake again. If gluten is causing this rash I need to know and avoid it. Since I stopped eating it the rash has gone away. I just can’t risk that rash coming back. I can’t. Prednisone worked and I don’t know if it was DH if prednisone would have been effective. I didn’t have any bad reactions to the steroid and was 60 glorious days of being itch free 

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cyclinglady Grand Master
cyclinglady
Posted

I am sorry that you are still struggling.  I read your old posts and you have had skin biopsies (might not have been taken correctly), antibodies testing, a negative endoscopy/biopsies, but I think you may have been on steroids while being tested.  It sounds like diagnostic h#@$!  

Have other autoimmune disorders possibly related to to DH (e.g. pemphigold) been ruled out?  

Besides locating a truly celiac-savvy (or other autoimmune)  dermatologist at a major celiac center, you can try improving your diet.  Focus on Whole Foods only.   Nothing processed.  Nothing.  At least for a few weeks and then slowly add in processed foods that should be safe and is normally gluten free.  Avoid even certified gluten-free products as 20 ppm maybe be too much for you at this time.  

I hope you figure it out.  

Victoria1234 Experienced
Victoria1234
Posted

Might not be dh if it goes away after a few days of going gluten-free. mine took months to heal completely. I even had to avoid all gluten-free alternative foods that were 20ppm.

 

ravenwoodglass Mentor
ravenwoodglass
Posted
4 hours ago, Victoria1234 said:

Might not be dh if it goes away after a few days of going gluten-free. mine took months to heal completely. I even had to avoid all gluten-free alternative foods that were 20ppm.

 

I had DH from childhood until I was diagnosed in my 40's.  Within a week of being gluten free and dropping iodized salt I stopped getting new lesions. However for the first couple years even a bit of CC would cause a new lesion within hours. It took at least a couple years of being very strict before the lesions became the last thing to let me know I had been glutened. After around ten years I went to just getting one or two little sores if I was glutened badly. Prednisone when I was a kid would stop the lesions and that would last about a month after I stopped the drug. Then they would be back.  I think there is a lot of variety amoungst us in our reactions to gluten even with DH. I am so thankful that the diet worked so quickly for me. I wish it did for everyone.

  • 2 months later...
Jlewisrn Contributor
Jlewisrn
Posted
  • Author
On 12/31/2017 at 10:03 AM, cyclinglady said:

I am sorry that you are still struggling.  I read your old posts and you have had skin biopsies (might not have been taken correctly), antibodies testing, a negative endoscopy/biopsies, but I think you may have been on steroids while being tested.  It sounds like diagnostic h#@$!  

Have other autoimmune disorders possibly related to to DH (e.g. pemphigold) been ruled out?  

Besides locating a truly celiac-savvy (or other autoimmune)  dermatologist at a major celiac center, you can try improving your diet.  Focus on Whole Foods only.   Nothing processed.  Nothing.  At least for a few weeks and then slowly add in processed foods that should be safe and is normally gluten free.  Avoid even certified gluten-free products as 20 ppm maybe be too much for you at this time.  

I hope you figure it out.  

I have ANA drawn which I think they were testing for lupus. I don’t know what else that tests but it was negative. My thyroid also came back good. By looking at my labs alone I’m the picture of heath. 

cyclinglady Grand Master
cyclinglady
Posted

@Jlewisrn 

I think one of your posts mentioned your rash now presenting as hives.  I have autoimmune hives.  My allergist, GI, and PCP think they are related to either my Hashimoto’s or Celiac Disease is it may be a stand-alone autoimmune issue.  Mine present or flare horribly (daily, afternoon/evening, thousands all over my body) after a gluten exposure.  These have lasted about six months  and a daily cocktail of  antihistamines help, at least with the itching.  My skin is clear each morning.   Once resolved (maybe my autoimmune flare has diminished), I only get hives when I get a bug bite or react to a medicine (like acetaminophen, not too long ago).    One bite and my arm or leg can be completely covered.  Again, antihistamines help.  I have also had just itching but no rash (usually when my celiac disease is active and I have had little blisters that I have scratched off, literally).  Not sure if that is the start of DH, but I sure hope NOT!  (BTW, recent endoscopy showed healed small intestine.) 

Autoimmune can present so strangely!  Keep to a SUPER clean gluten-free diet.  It is what I did to insure that my endoscopy would reveal a healed small intestine.  Unfortunately, they found autoimmune gastritis.  So my GI issues are not over yet!  But better each day!  

 

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