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New to DH

trbelew11

By trbelew11
in Dermatitis Herpetiformis

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trbelew11 Newbie
trbelew11
Posted

Hi everyone,

I have had a horrible rash for a couple weeks now. I'm 23, and I've had the rash on and off for probably 1-2 years now. This time it is by far the most serious case I've had. I also have Raynaud's syndrome as does my little sister. My mom has rheumatoid arthritis and my grandmother has myasthenia gravis, all autoimmune. 

A little bit of background, when I was probably in 4th grade I was diagnosed with IBS and I had horrible migraines. Also have irregular periods, loss of tooth enamel, extreme fatigue, irritability, anxiety, constipation, diarrhea, buiky stools, extreme bloating, nausea, brain fog. I am on buproprion 300mg for anxiety. It used to give me so much energy and now even with it, I am very bogged down. Now I have this rash.

The rash feels like nothing I've felt before. I talked to one of my nurse practitioner friends and gave her a rundown of my symptoms and showed her my rash. Obviously there are many skin rashes that could be similar. She is the one that mentioned DH. I couldn't get into my doctor this week because they were full so I ended up going to urgent care. It just got to the point that I couldn't take it anymore. The urgent care doctor said it could definitely be DH since its not bug bites, not scabies, and I'm the only one in my household that has it. I haven't changed anything such as laundry detergent, soap, shampoo, etc. It is a constant itch. He recommended seeing a dermatologist to get a biopsy done. Occasionally I get relief but not for long. It itches and hurts. It starts out as little pustules but quickly turns into a hot mess because I can't stop itching. Its on my scalp, back, bilateral arms and legs, and feet. I look like i'm crazy. Everyone at work is asking whats wrong, I constantly have blood on my clothes from itching, and some of my spots are now infected. The doctor gave my doxycycline to keep infection away and prednisone. I haven't taken the prednisone since it can change the blood test levels. Here are the pics:

Open Original Shared Link

Honestly, I have scratched so much that its near impossible to tell what it started out as. I was thinking of going to my primary care doctor to get the celiac panel done. Also going to the dermatologist and getting the biopsy done next to the lesion. Should I just right away mention that we are thinking its DH or should I let my doctor explore his ideas. I'm just worried he will think its nothing or brush it off as eczema (which I have never had) or scabies, which I know I don't have or my husband and daughter would have too after 1-2 years of this.  It is relieving to have maybe found a reason why I feel like this but I don't want my doctor to brush it off as nothing. 

Any of thoughts from you all would be much appreciated!

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squirmingitch Veteran
squirmingitch
Posted

Hi & welcome to where you never knew you didn't want to be. You most certainly should get dh biopsies!

From reading what you wrote, you've done your homework. Hallelujah! It's so nice when people have done some research. Good girl for not taking the prednisone. Yay! The doxy is okay to take.

You know to keep eating the horrid gluten until testing is over. Just a reminder.

My opinion is not to let the doc explore his ideas. Just state right off what you suspect and be firm in telling him you want to be tested. You read that 60% of those with dh test negative on the serum panel? Still, it won't hurt to get it done. INSIST on the FULL panel though.

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

If he won't order it, can you go to where your NP friend works? She can order the blood work.

Can you also get her to do some checking around to find a derm that is actually experienced in dh & doing a dh biopsy? That would be your best bet. You need to really do your best to find a derm who has that experience. If you can't find one then you're going to have to be intractable when you go & tell them they have to prove it's NOT dh by doing a proper biopsy & then if it turns up negative, you will try their meds & consider it's what they say it is.

Make sure to run down the list of your celiac symptoms to both the PCP and the derm and also tell them the doc at the urgent care said it could definitely be dh & said you need a dh biopsy done. 

DepressedfromDH Newbie
DepressedfromDH
Posted

I was recently diagnosed with DH. I'm finding it really depressing and hard to deal with. Actually a nightmare. I am trying not to panic but this is really horrible. Since just after labor day I have been suffering almost the whole time with the worst rash imaginable and scratched myself to the point of bleeding and bruising, had to go to the ER because it was so severe. I had several biopsies by the dermatologist trying to figure out what it was. He finally said it was DH and put me on a low dose of Dapsone until he can check my blood again. I am not finding much relief from 50 Mg a day of Dapsone so I had to supplement it with Prednisone also and still itching. I just want my skin back. I have been trying to hard to be gluten free and it was finally getting better after a 7 week outbreak. Then I must have gotten glutened eating out even though I ate off the gluten free menu. Now I had another outbreak all over again. We are now on week three and the doctor won't up my dose of Dapsone yet. This is insane and I feel afraid to even eat out anymore and that my social life is over. I am now afraid to go out with friends for fear of gluten and going through this hell over and over for weeks at a time. Very depressed about this and feeling down. Both times I have broken out it has started on my forearms/elbows and above my knees and then spreads to other areas including the rest of my arms, torso, butt, the rest of my upper legs and back of legs and chest. I am so terrified it will affect my face if I have more outbreaks. Any advice? Should I avoid eating out completely since I am so sensitive?

 

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, DepressedfromDH said:

I was recently diagnosed with DH. I'm finding it really depressing and hard to deal with. Actually a nightmare. I am trying not to panic but this is really horrible. Since just after labor day I have been suffering almost the whole time with the worst rash imaginable and scratched myself to the point of bleeding and bruising, had to go to the ER because it was so severe. I had several biopsies by the dermatologist trying to figure out what it was. He finally said it was DH and put me on a low dose of Dapsone until he can check my blood again. I am not finding much relief from 50 Mg a day of Dapsone so I had to supplement it with Prednisone also and still itching. I just want my skin back. I have been trying to hard to be gluten free and it was finally getting better after a 7 week outbreak. Then I must have gotten glutened eating out even though I ate off the gluten free menu. Now I had another outbreak all over again. We are now on week three and the doctor won't up my dose of Dapsone yet. This is insane and I feel afraid to even eat out anymore and that my social life is over. I am now afraid to go out with friends for fear of gluten and going through this hell over and over for weeks at a time. Very depressed about this and feeling down. Both times I have broken out it has started on my forearms/elbows and above my knees and then spreads to other areas including the rest of my arms, torso, butt, the rest of my upper legs and back of legs and chest. I am so terrified it will affect my face if I have more outbreaks. Any advice? Should I avoid eating out completely since I am so sensitive?

 

Yes!  Do not eat out!  Seriously.  

I do not have DH, but if I did, there is no way I would eat out at least until the DH was completely gone.  As it stands, I eat out only at 100% gluten free restaurants.  Eating out is not worth the risk of getting glutened.  I do not have the rash, but my antibodies increase and my symptoms last for months....yes, months after a tiny gluten exposure.  

I just order a drink while out dining with family and friends.  Fun, safe and no risk!  

Read through our DH section for tips.  My heart goes out to you!  

GFinDC Veteran
GFinDC
Posted

Hi Depressed,

There's some really smart people with DH here, and they will be able to give you good advice.  I think one thing they do is avoid iodine while having a flare.  There is also another drug they take that helps some.  Doxycycline (SP) I think,

Personally I don't think any celiac should eat out for the first 6 months, DH or not.  It can take that long to learn the gluten-free diet and recover the gut and body to a reasonable extent, or longer.  Instead eat the foods you cook at home, which should not include any processed foods or very few.  Try to not eat anything with more than 3 ingredients.  Simplify your diet so you really know what you are eating, including all ingredients.   Stick with whole foods like meats, veggies, nuts, fruits.  I would say eggs but I think the people with DH avoid them during a flare due to the iodine content.

It takes very little gluten to cause the immune system to react.  And the immune system really doesn't like us getting sick, so it doesn't stop reacting just a day or two after exposure.  The immune reaction can go on for weeks or months.  So any exposure to gluten can be a problem for that long.  I tend to think that reactions are worse at the beginning of the gluten-free diet than after a few years,  But at the beginning it seems to me that we react to tiny, tiny amounts of gluten very quick;ly and have even worse symptoms than before going gluten-free.  Our immune systems are already revved up to high attack mode and ready to charge at a moments notice.  So being extra careful at the beginning of the diet gives our immune system a chance to relax and also our bodies a chance to heal.  Sometimes people seem to think celiac disease is not a serious condition, because it involves a diet, but that is not true.  Unfortunately some restaurants don't take proper care to provide gluten-free foods for us.  They may consider celiac and the gluten-free diet a fad.  It is for some people but not for us.  Celiac disease is the only autoimmune disease where we know and understand what the trigger is for flares.

I think things will improve for you but you will need to make a serious effort to change your diet and be smart about avoiding all gluten.  That's why the eating whole foods and simple foods is best IMHO.  You can always branch out on your diet when things are going better.

Welcome to the forum Depressed ! :)

 

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