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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.

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

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

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
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

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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    • trents
      Autoimmune Reaction to SO many foods

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      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
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      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
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      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
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      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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