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Not Dh

running-girl

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running-girl Rookie
running-girl
Posted

It's been a long time since I've visited this forum but felt i should give you an update. Though I was convinced my itchy rash was DH, I have since learned I have lupus. I'm doing well. I have a great rheumatologist and my meds are helping.

My thought in posting this was, I know there are many of you, like me. Looking for an answer but not getting the results you had hope for with your gluten free diet. My rash is so similar to what I understand DH to be that I'm still surprised at the results. But as I learn more and more about Lupus the more I see it is a fit.

So, just a note of caution to keep pushing your doctors for the care you require. It was a high ANA result that was the clue, in my case.

I hope you all are well. I don't know about you, but this heat/sun/sweat sure makes my rash super itchy.

Take care and thanks for all of the warm support many of you offered me.

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Hopeful1950 Explorer
Hopeful1950
Posted

Thank you so much for the update. I'm glad you finally got a definitive diagnosis and treatment that is helping you.

I do have a question...can you give some insight on how your rash is different than DH? Did it improve at all on a gluten free diet?

I'll bet it is wonderful not to worry about cross contamination and all that stuff!

running-girl Rookie
running-girl
Posted
  • Author

My rash still seems more similar to DH than to the typical Lupus rashes that I've read about. However lupus can attack your skin in many different ways and nothing is really typical. I'm still learning but I think the best explanation may be that it's more like an allergic reaction to what's happening in my body, the sun or heat then it is a direct infection.

Along with the high ANA results I started developing other symptom's of Lupis. So, though I'm certainly not happy about the diagnosis, I am pleased that I have good care in place.

It's hard to know if the gluten free diet improved my skin. For a while I thought it was, but I was never rash free. I think the improvement I saw was from the antihistamines I was taking. I will say that I felt an overall improvement in my health when I eliminated gluten. Personally I think we have too much bread in our diets and since this experience, I have greatly reduced my overall consumption. I don't see that changing.

It is nice to not have to worry about cross contamination though. Dining out is a much more pleasant experience - that's for sure.

Thanks for asking.

  • 3 weeks later...
shayre Enthusiast
shayre
Posted

Could you tell me more? One of my Rheum docs also thought that I had borderline lupus. This was based on symptoms mostly (ie. photosensitivity, rash, blotchy skin, nose ulcers, muscle/joint pain). My ANA was normal, but another test came back off...and my primary doc said that it was lupus-like but not lupus. It indicated something systemic. I am also on here trying to figure out my rash. I have been "unofficially" diagnosed with celiac disease because of symptoms and genetic tests. Nothing is for certain. All of my symptoms have improved on a gluten free diet over almost 2 yrs now, including the rash. However, the rash is not gone totally, and this week there has been a flare up too. Mine looks like acne, but it's certainly not. It was spreading everywhere until I went gluten free, and now it's there...but not bad. It is only on my belly and butt now. I do have a teeny bit on the back of my arms and back, and now and then my chest will get a few itchy bumps. On my belly...it almost looks like a white head center, but sometimes itchy. After I went gluten free, I did get a few blisters that were p%$#@# after eating corn. I no longer eat corn. I am trying to fish my way through all of the symptoms...what is celiac and what might be lupus. Do you have any helpful advice?

running-girl Rookie
running-girl
Posted
  • Author

Hi Shayre,

I'm certainly no expert and just as confused as you. My rash is very persistent and the meds my rhuemy gave me have not gotten rid of it yet. Some of the other symptoms that I developed were Raynaud's (fingers and toes turning white in the cold), overall exhaustion, mouth sores, and chest pain when I breath deep. Not all of my test results are consistent with Lupus either. My doctor says it is still in the emerging stages. My first ANA was very high, but the more recent one was low.

I've learned that autoimmune diseases are very difficult to diagnose. They are a simply a combination of symptoms. The medical profession, in an attempt to provide more standard treatments, lumps a bunch of symptoms together and gives it a name. Sometimes these symptoms overlap with other groups and some aren't standard in any given dx. Many people are diagnosed with more than one autoimmune disease.

My doctor is not sure if my rash is part of the lupus or something else. I guess the trick is to just treat the symptoms and try to stay ahead of the flares.

Again, I'm far from an expert. My advise is to stay in front of your doctor. Be respectful and kind, but strong. Ask for more tests, ask to see specialists, ask for copies of your results. Keep a journal.

I am doing the same as you, on the internet trying to find some answers. Sorry I couldn't be anymore helpful.

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