DH and swollen lymph nodes

[jwall123]

Hello everyone, I'm new here and I'm also new to all of this. I'm currently self diagnosed with dermatitis herpetiformis. I have an appointment with my dermatologist soon and I'm hoping she can give me a clear diagnosed. I have an itching, burning, blistering  rash down the back of my neck. Some of it is in a huge clump and some is more individual. Sometimes it feels like something is stinging my neck. My lymph nodes are also incredibly swollen under the rash. Have any of you ever experienced this? My Dr. prescribed me a round of prednisone. I'm 2 days in with that so far. I'm also applying ice and coconut oil. Just wondering if anyone else gets swollen lymph nodes under their rash. 

[jwall123]

Hello everyone, I'm new here and I'm also new to all of this. I'm currently self diagnosed with dermatitis herpetiformis. I have an appointment with my dermatologist soon and I'm hoping she can give me a clear diagnosed. I have an itching, burning, blistering  rash down the back of my neck. Some of it is in a huge clump and some is more individual. Sometimes it feels like something is stinging my neck. My lymph nodes are also incredibly swollen under the rash. Have any of you ever experienced this? My Dr. prescribed me a round of prednisone. I'm 2 days in with that so far. I'm also applying ice and coconut oil. Just wondering if anyone else gets swollen lymph nodes under their rash. 

[trents]

15 minutes ago, jwall123 said:

Hello everyone, I'm new here and I'm also new to all of this. I'm currently self diagnosed with dermatitis herpetiformis. I have an appointment with my dermatologist soon and I'm hoping she can give me a clear diagnosed. I have an itching, burning, blistering  rash down the back of my neck. Some of it is in a huge clump and some is more individual. Sometimes it feels like something is stinging my neck. My lymph nodes are also incredibly swollen under the rash. Have any of you ever experienced this? My Dr. prescribed me a round of prednisone. I'm 2 days in with that so far. I'm also applying ice and coconut oil. Just wondering if anyone else gets swollen lymph nodes under their rash. 

Welcome to the forum!

You would do well to also get antibody testing for celiac disease if you have not. If you get your rash biopsied and it is confirmed to be DH, that will also prove you have celiac disease since there is no other known cause.

[jwall123]

1 minute ago, trents said:

Welcome to the forum!

You would do well to also get antibody testing for celiac disease if you have not. If you get your rash biopsied and it is confirmed to be DH, that will also prove you have celiac disease since there is no other known cause.

Thank you! It's so hard to know where to start with this and, honestly, no one around where I live seems to know much about it. I started getting sick whenever I ate anything with gluten in it around the summer. I had a stomach virus prior to that, so I figured it was linked to that and only temporary. For months I would try to add gluten back into my diet only to feel like an alien was going to pop out of my stomach hours later. I also got headaches and chills. That severe reaction stopped and I thought it was all over. I have still tried to stick to a gluten-free diet because my stomach feels better when I do. Recently I have noticed the rash popping up whenever I eat gluten. This last/current rash has been the worst! I'm definitely sticking to a gluten-free diet from now on. 

[trents]

Celiac disease has a genetic potential component to it but in addition to the genes there has to be a triggering stress event to turn the genes on such that the potential becomes active celiac disease. A common triggering event can be a viral infection, such as you mentioned having recently.

Getting a proper biopsy done for DH can be difficult. First, it has to be done during an active outbreak. Given the difficulty of getting a specialist appointment like with a dermatologist in a timely fashion can be extremely challenging. By the time the appointment rolls around your outbreak may have subsided. It's like herding cats. Second, dermatologists often do not do the biopsy correctly. The sample should be take from an area adjacent to one of the blistered areas, not from the blister itself.

This is why the more productive approach might be to have your primary care doc first do a celiac antibody screen. Ask for a full celiac panel so that he runs several different antibody tests and not just the tTG-IGA. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Finally, whatever you do, do not attempt the gluten free diet until all testing for celiac disease is done. Starting the gluten-free diet ahead of testing will sabotage the test results. After antibody testing is done, the physician may want you to have an endoscopy with biopsy done by a GI doc to check microscopically for damage to the villi that line the small bowel, the hallmark of celiac disease. You should still be eating regular amounts of gluten leading up to both kinds of testing.

Merry Christmas!

[Gary Hamilton]

I also have the Rash. Stared on my knees elbows then my butt and waist. My limp nodes are swollen and hurting also. B3 has helped alot but the prednisone only helped some and rash came back.dexamethasone has helped with the rash better than anything. And gluten free diet. I have lost weight but not alot after I figured out what I can eat. Now I’m just worried about my limp nodes hurting and swollen. But they could be from the rash are small intestines healing. But I want to get the limp node deal first. Cause it said ciliac is can cause lymphoma. And I have the rash and you only get that rash with ciliac disease. So staying on gluten free till doctor tells me different. Hope this helped you. 

[Scott Adams]

Welcome to the forum!

I've not had swollen lymph nodes with a DH rash, but one of my symptoms was a chronic DH rash on the back of my thumb.

May I ask how you self-diagnosed? Have you had a blood panel yet for celiac disease? Have you noticed a connection with the rash and your diet?

[jwall123]

1 hour ago, Scott Adams said:

Welcome to the forum!

I've not had swollen lymph nodes with a DH rash, but one of my symptoms was a chronic DH rash on the back of my thumb.

May I ask how you self-diagnosed? Have you had a blood panel yet for celiac disease? Have you noticed a connection with the rash and your diet?

Yes, I have noticed a link to gluten and the rash. As I mentioned before, back in the summer,  I had a stomach virus that made me unable to eat gluten. I thought it was just linked to the virus so I tried to start gradually adding it back in. The stomach issues were less severe, but then I started to notice the rash. I have an appointment with my dermatologist on the 3rd and I'm being referred to a GI by my GP. I'm hoping to get some answers. The swollen lymph nodes are my major concern. I only have them under the rash. Over the holidays, my mother in law said it also looked like possible shingles. I'm just surprised my GP missed that of that is what this is. 

[jwall123]

On 12/25/2022 at 6:07 PM, Gary Hamilton said:

I also have the Rash. Stared on my knees elbows then my butt and waist. My limp nodes are swollen and hurting also. B3 has helped alot but the prednisone only helped some and rash came back.dexamethasone has helped with the rash better than anything. And gluten free diet. I have lost weight but not alot after I figured out what I can eat. Now I’m just worried about my limp nodes hurting and swollen. But they could be from the rash are small intestines healing. But I want to get the limp node deal first. Cause it said ciliac is can cause lymphoma. And I have the rash and you only get that rash with ciliac disease. So staying on gluten free till doctor tells me different. Hope this helped you. 

Are your lymph nodes swollen all over or just where the rash is? I hope you get some answers!

[jwall123]

I should also add that I have never had the swollen lymph nodes with the other rashes, just this one. This one is also in a different location than normal, but my husband says they look the same. This rash also feels like needles stabbing me in the neck. My usual rash is itchy, red blisters (like this one), but no pain. 

[knitty kitty]

On 12/25/2022 at 5:07 PM, Gary Hamilton said:

I also have the Rash. Stared on my knees elbows then my butt and waist. My limp nodes are swollen and hurting also. B3 has helped alot but the prednisone only helped some and rash came back.dexamethasone has helped with the rash better than anything. And gluten free diet. I have lost weight but not alot after I figured out what I can eat. Now I’m just worried about my limp nodes hurting and swollen. But they could be from the rash are small intestines healing. But I want to get the limp node deal first. Cause it said ciliac is can cause lymphoma. And I have the rash and you only get that rash with ciliac disease. So staying on gluten free till doctor tells me different. Hope this helped you. 

Thiamine, Vitamin B1, can help with your swollen lymph nodes.  

Thiamine and Niacin are partners.  Niacin does helps with the Dermatitis Herpetiformis rash.  

Thiamine can help with swollen lymph nodes.  Lymph glands use lots of Thiamine.  

Here's an article by Dr. Lonsdale who advocates high dose Thiamine.  

http://www.hormonesmatter.com/recurrent-fever-swollen-glands-febrile-lymphadenopathy-thiamine/

My lymph nodes will swell when I've been exposed to gluten or an infection.  I take high dose Thiamine as Dr. Lonsdale recommends and my lymph nodes shrink and feel much better.

There's eight B vitamins that all work together.  It's okay to take extra of Thiamine and Niacin.  Just make sure that you are getting enough of all eight B vitamins.  Perhaps a B Complex in addition to Niacin and Thiamine.

Hope this helps!

[Gary Hamilton]

13 hours ago, jwall123 said:

Are your lymph nodes swollen all over or just where the rash is? I hope you get some answers!

 

[jwall123]

4 hours ago, knitty kitty said:

Thiamine, Vitamin B1, can help with your swollen lymph nodes.  

Thiamine and Niacin are partners.  Niacin does helps with the Dermatitis Herpetiformis rash.  

Thiamine can help with swollen lymph nodes.  Lymph glands use lots of Thiamine.  

Here's an article by Dr. Lonsdale who advocates high dose Thiamine.  

http://www.hormonesmatter.com/recurrent-fever-swollen-glands-febrile-lymphadenopathy-thiamine/

My lymph nodes will swell when I've been exposed to gluten or an infection.  I take high dose Thiamine as Dr. Lonsdale recommends and my lymph nodes shrink and feel much better.

There's eight B vitamins that all work together.  It's okay to take extra of Thiamine and Niacin.  Just make sure that you are getting enough of all eight B vitamins.  Perhaps a B Complex in addition to Niacin and Thiamine.

Hope this helps!

Thank you so much!

[Gary Hamilton]

Know my rash was mainly on my knees elbows but then around my waist butt some bumps on my neck. I went to gastroenterologist today. I get scoped tomorrow. But all he said about the rash and limp nodes swollen was he would go to a cancer doctor and make sure I didn’t have lymphoma. And he was not a rash doctor. Made me very upset. But that’s how a lot of doctors are now days. They want take time to here you out. I been taking all the b vitamins. Helping some. Dexmethasone has helped my rash a lot. And the limp nodes if that helps you 

[Gary Hamilton]

Thank you for the information. Started taking it yesterday.

[Gary Hamilton]

My gastroenterologist still told me I needed to see a oncologist. To rule out lymphoma. So if they keep hurting I guess I will. But this mess hit me 4 years ago and they checked me and didn’t find anything. I had my blood work done to . Just to get a piece of mind and blood count and all was good.

[Gary Hamilton]

On 12/27/2022 at 12:23 PM, jwall123 said:

Thank you so much!

So gluten can make your limp nodes swell? Did you have any pain in them? Plus I’m on gluten free diet but sure I still get contaminated food some probably.

[Gary Hamilton]

On 12/26/2022 at 8:00 PM, jwall123 said:

Are your lymph nodes swollen all over or just where the rash is? I hope you get some answers!

Really just in three spots. But the rash is close to my neck now. But mainly one limp node on left side of neck and one under my arm and groin one side. But I’m not going to stress myself like I did last time. And they found nothing. 

[knitty kitty]

Studies show low levels of Thiamine promote cancer cell growth.  But High Dose Thiamine reduces the number of cancer cells.

 

High Dose Vitamin B1 Reduces Proliferation in Cancer Cell Lines Analogous to Dichloroacetate

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963161/

And...

B-cell lymphoma, thiamine deficiency, and lactic acidosis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5242120/

And...

The role of thiamine in cancer: possible genetic and cellular signaling mechanisms

https://pubmed.ncbi.nlm.nih.gov/23893925/

 

Edited December 29, 2022 by knitty kitty
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[K M Wade]

I found that direct application of ice was a tremendous help in soothing the intense itching, something that the prescription anti-histamines failed to do. My rash began to subside as soon as I eliminated all Gluten from my diet.

[Scott Adams]

Some people have reported that good old Ben-Gay cream helps with a DH rash.

[MADMOM]

On 12/24/2022 at 3:44 PM, jwall123 said:

Hello everyone, I'm new here and I'm also new to all of this. I'm currently self diagnosed with dermatitis herpetiformis. I have an appointment with my dermatologist soon and I'm hoping she can give me a clear diagnosed. I have an itching, burning, blistering  rash down the back of my neck. Some of it is in a huge clump and some is more individual. Sometimes it feels like something is stinging my neck. My lymph nodes are also incredibly swollen under the rash. Have any of you ever experienced this? My Dr. prescribed me a round of prednisone. I'm 2 days in with that so far. I'm also applying ice and coconut oil. Just wondering if anyone else gets swollen lymph nodes under their rash. 

have you had your lymph nodes checked out?  just read your post and was concerned 

[Morgan Tiernan]

A little late to the party in terms of seeing this and responding to it, so apologies! But I wanted to responds as this sounds exactly like my experience. I had covid, followed by shingles, followed by strep… that unlucky bout of infections is what lead me here with dermatitis herpetiformis. I was also self diagnosed in the beginning and turns out I was absolutely right! Currently waiting for biopsy confirmation though.

In terms of swollen lymph nodes, I get this when my rash is present. Mostly in my neck and they’re a lot more swollen if I’ve been cross-contaminated with gluten and when the rash is at its worst!