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Hopping Between Physical GI Symptoms and DH

Moonchild94

By Moonchild94
in Dermatitis Herpetiformis

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Moonchild94 Rookie
Moonchild94
Posted

Hi everyone! Over this last week I have developed another round of this blistery itchy rash. It really started in 2018 when I believe my symptoms started to change, as this last week has progressed I have noticed I don't have any GI symptoms really but my rash will become incredibly itchy and burning with any gluten ingestion. When it first happened I didn't think it was DH because it didn't look like typical DH, mine looks more like a blister then anything. Anyways this is my 5th breakout of this but I am now noticing it on my hands as well as my torso which is usually where it is right over my stomach oddly enough which made me look into this truly as celiac. 

 

Have any of you gone through patches of the rash and then some time without one? I know it is different for everyone but I'm confused about the switching off between physical digestive symptoms and then this rash. Any help is appreciated, I am still not diagnosed properly yet, I would go in to get this looked at but no doctors in my area are doing in person visits. 

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Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! So if I understand your post correctly, you've never been diagnosed with celiac disease or DH, but you've noticed some skin blistering that may be associated with gluten consumption. If this is correct, and you are still consuming gluten, now would be a good time for you to get a blood panel test for celiac disease. In a perfect world it would also be a great time to get a DH biopsy done on the rash, but it would require an in-person visit.

There is no real way to tell based on just your post what it could be, as there are lots of possibilities.

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Mushroom65 Newbie
Mushroom65
Posted

I had developed this issue but only after eating gluten free oats. Went back on my strict gluten-free diet, not oats, and now all is good. Obviously something you’re eating is causing your systems. Try an elimination diet. Write down everything. Stay strictly gluten-free. 
Let me know if I can help. Marsha

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ernieb Newbie
ernieb
Posted
On 8/26/2021 at 3:30 PM, Moonchild94 said:

Hi everyone! Over this last week I have developed another round of this blistery itchy rash. It really started in 2018 when I believe my symptoms started to change, as this last week has progressed I have noticed I don't have any GI symptoms really but my rash will become incredibly itchy and burning with any gluten ingestion. When it first happened I didn't think it was DH because it didn't look like typical DH, mine looks more like a blister then anything. Anyways this is my 5th breakout of this but I am now noticing it on my hands as well as my torso which is usually where it is right over my stomach oddly enough which made me look into this truly as celiac. 

 

Have any of you gone through patches of the rash and then some time without one? I know it is different for everyone but I'm confused about the switching off between physical digestive symptoms and then this rash. Any help is appreciated, I am still not diagnosed properly yet, I would go in to get this looked at but no doctors in my area are doing in person visits. 

I have experienced DH for 14 years and many times with GI symptoms.  The only way I have been able to control DH (because quite frankly all of us get exposed routinely to gluten through fillers in the various tablets we ingest) is to take a drug called Dapsone.  Look it up, speak with your doc about it.  50 mg of Dapsone at bedtime usually keeps DH AWAY! for me.

Now Dapsone is an old drug, and is prescribed for leprosy, and is generally what I call I a wicked drug as it lowers my red blood count, to the point that I am officially anemic (drug-induced anemia).  That is fine with me, fine with my internist and keeps me steady.  I have learned to live with it, and simply very thankful.  ernieb

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trents Grand Master
trents
Posted (edited)
26 minutes ago, ernieb said:

I have experienced DH for 14 years and many times with GI symptoms.  The only way I have been able to control DH (because quite frankly all of us get exposed routinely to gluten through fillers in the various tablets we ingest) is to take a drug called Dapsone.  Look it up, speak with your doc about it.  50 mg of Dapsone at bedtime usually keeps DH AWAY! for me.

Now Dapsone is an old drug, and is prescribed for leprosy, and is generally what I call I a wicked drug as it lowers my red blood count, to the point that I am officially anemic (drug-induced anemia).  That is fine with me, fine with my internist and keeps me steady.  I have learned to live with it, and simply very thankful.  ernieb

"Dapsone is a small molecule with anti-inflammatory immunosuppressive properties as well as antibacterial and antibiotic properties. It is used clinically to treat leprosy and malaria, and is being investigated for the treatment of a variety of skin infections." (from https://www.alzforum.org/therapeutics/dapsone#:~:text=Dapsone is a small molecule,a variety of skin infections.

Sometimes we must pick our poison but be aware that taking an immunosuppressant and an antibiotic that you open yourself up to possibly worse infections or even cancer and you are also altering your gut bacteria mix.

Edited by trents
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ernieb Newbie
ernieb
Posted
6 hours ago, trents said:

"Dapsone is a small molecule with anti-inflammatory immunosuppressive properties as well as antibacterial and antibiotic properties. It is used clinically to treat leprosy and malaria, and is being investigated for the treatment of a variety of skin infections." (from https://www.alzforum.org/therapeutics/dapsone#:~:text=Dapsone is a small molecule,a variety of skin infections.

Sometimes we must pick our poison but be aware that taking an immunosuppressant and an antibiotic that you open yourself up to possibly worse infections or even cancer and you are also altering your gut bacteria mix.

agree that one must be aware of the risks involved; however for me,  the risk is small  when compared to  uncontrollable itching results from unintentional glutening

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marcib419 Newbie
marcib419
Posted

Hi.  The blisters are a form of celiac.  Called dermatitis herpe tiformus.  I had that on my elbows, knees and lower back. Was diagnosed with celiac, and dr. Told me that it is a form of celiac also I have GI symptoms.  I took dapsone for 2 years, and it helped with the blisters, but I decided to follow a full gluten free diet, and I don't get blisters anymore.  There is an ointment by prescription for the itchy blisters called Clobetasol.  Good luck

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