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Dermititis Herpetiformis- Celiac rash

Evewithoutwheat

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Evewithoutwheat Newbie
Evewithoutwheat
Posted

Hi,

 

I'm new to this group (first time poster). I, as most of you spent a long time suffering before any diagnosis of my condition. I have many symptoms of celiac disease, mental and physical. When my diet contained gluten these presented themselves as anxiety, depressions, digestive issues, fatigue, muscle and joint pains and senstive skin. Since following a gluten free diet my symptoms have greatly reduced (Yay!) BUT I now suffer from Dermititis Herpetiformis. For those that aren't aware of it, its an uncontrollably itchy and then painful rash that I get head to toe for about 2 weeks after any contamination. It knocks me out for weeks because it seems to bring flu-like symptoms with it and makes my hands extremely painful due to the rash.

 

I have two main problems with this;

Dapsone, the drug you can take to reduce these outbreaks (I have such a bad reaction to it so I can't take it)

I get this reactions from products that should not contain gluten but must have some undeclared contamination risk. For example, I have had an outbreak over night and yesterday the only products I ate not officially gluten free were melon and potato waffles.

 

Does anyone else experience this? Is there anyway to reduce outbreaks without shopping solely in the gluten free section of the supermarket?

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Victoria1234 Experienced
Victoria1234
Posted
2 hours ago, Evewithoutwheat said:

Hi,

 

I'm new to this group (first time poster). I, as most of you spent a long time suffering before any diagnosis of my condition. I have many symptoms of celiac disease, mental and physical. When my diet contained gluten these presented themselves as anxiety, depressions, digestive issues, fatigue, muscle and joint pains and senstive skin. Since following a gluten free diet my symptoms have greatly reduced (Yay!) BUT I now suffer from Dermititis Herpetiformis. For those that aren't aware of it, its an uncontrollably itchy and then painful rash that I get head to toe for about 2 weeks after any contamination. It knocks me out for weeks because it seems to bring flu-like symptoms with it and makes my hands extremely painful due to the rash.

 

I have two main problems with this;

Dapsone, the drug you can take to reduce these outbreaks (I have such a bad reaction to it so I can't take it)

I get this reactions from products that should not contain gluten but must have some undeclared contamination risk. For example, I have had an outbreak over night and yesterday the only products I ate not officially gluten free were melon and potato waffles.

 

Does anyone else experience this? Is there anyway to reduce outbreaks without shopping solely in the gluten free section of the supermarket?

Hello and welcome to the forum!

i don't have a solution for you but I can tell you I had the same thing happen. After going gluten-free I was so extremely sensitive and the issue I had was the dh. I think I've read you can have flare ups even without gluten for quite a while. I certainly did! How long have you been gluten-free? I had flare ups and itching when I would even have foods that were supposedly less than or equal to 20 ppm. This went on for maybe a year? Something extremely ridiculous like that. Then one day my dh turned purpley and flattened out. Then one day it was a bit more skin colored and disappeared. Never had the problem since.

good luck with it. I'm sure some others will chime in with their advice and great knowledge as well. You found a great place to be! It's my safe haven.

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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
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