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Benefit Of Going To Dr. Over Just Self Diagnosing?

lanhamae

By lanhamae
in Dermatitis Herpetiformis

Recommended Posts

lanhamae Newbie
lanhamae
Posted

Hey guys,

I am a new member but I've been reading this forum as a guest for a few months now. I think I might have DH based on the different symptoms others have talked about on here. I have an angry red rash all over my lower legs/ankles. It shows up on both sides of my body and currently looks like big open sores because I can't stop scratching it. It's been hanging around for 5 years now, some spots will heal and leave purple looking scars and new areas will open up. I also have a patch on my head and on my neck. I went to the dr and asked him to do bloodwork, he told me it came back negative for celiac and that it didn't sound like that's what I had anyway. My symptoms include horrible migraines (that usually start about 30 mins after drinking beer, eating pasta dishes, etc.) joint pain, gastro issues, infertility, etc. The doctor told me that since I wasn't throwing up all the time and losing lots of weight it probably wasn't Celiac and that my leg was probably eczema (i know I'm new here but I know there are lots of different symptoms of gluten issues so I don't think he knew what he was talking about). I don't think it's eczema though because i've had tons of different steroid creams prescribed by allergy doctors over the years and nothing helps it.

 

I was thinking about going to a dermatologist to get the rash looked at to see definitively what it is, but I stopped eating gluten about 4 weeks ago and already I'm seeing improvements in the rash and the itchy level. However, I was eating at a restaurant and think I may have been cc'd because about 30 mins after lunch my legs started itching like crazy, as well as my hands and fingers. I was wondering if it's worth it to go to the doctor if I already know that cutting out gluten is helping?
Do they give you something like a prescription to help with flare-ups? I would do almost anything right now to stop the itching. It seems like it's worse now than it's ever been (maybe because my body had a chance to heal a little and is now more affected by smaller amounts of gluten?).

 

I don't want to have to go back on a gluten diet after getting a small taste of freedom (4 weeks migraine free is longer than ever in my whole life) but I don't know if there's a reason you should go get a formal diagnosis. Any help would be appreciated!

 

P.S. I saw somewhere in a thread that someone mentioned photo boards? How do I get to those? My rash looks like the DH pictures I see online but this seems to be a more reputable source than just googling it.

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bluewhitesky Rookie
bluewhitesky
Posted

Welcome! I'm new here too and might not be the best person to answer your questions, but I can direct you to the photo bank thread:

 

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

 

There are also lots of photos in individual threads but you have to spend some time looking around.

squirmingitch Veteran
squirmingitch
Posted

Welcome lanhamae! You pretty much spelled it all out in your post. You have been reading & paying attention & it shows! Good for you! 

 

You answered your own questions. And you know what happens when you eat gluten. Okay, yes, there are MANY symptoms of celiac disease as well as Non celiac gluten intolerance. Repeatedly we hear migraines, joint pains. gastro & infertility! Over & over & over again! Those would be among the most commonly reported from what I've read on here.

 

There would be one reason that I could think of to get an official dx & that would be if you have kids in future & 1 or more shows symptoms of celiac then if you were dx'd, it would make it easier for you to get a dx for the child or children. Otherwise, you might have problems getting the docs to take you seriously & consider any child you have could possibly have celiac. 

 

You know how hard it is to get a dx & how hard is to get a dx when you have dh. 

 

As to any drug to help. Dapsone. But I would advise you to research it throughly before you leap. There are some real repercussions & considerations & you need to be carefully monitored while taking it. Also, if you're allergic to sulfa drugs then you probably won't be able to take Dapsone as it's in the sulfa class. Many here have tried it & had awful  side effects & had to give it up. Some have used it quite successfully. 

 

You can try limiting iodine. See thyca.org for a low iodine diet (minus the gluten foods of course). Check vitamins for iodine content also.

 

Oh, btw, you wouldn't believe how many who had infertility problems & once they were gluten free for a while & the body has a chance to heal, they were able to successfully conceive & have healthy children. So don't think you're out of the game on that score.  :)

lanhamae Newbie
lanhamae
Posted
  • Author

Welcome lanhamae! You pretty much spelled it all out in your post. You have been reading & paying attention & it shows! Good for you! 

 

You answered your own questions. And you know what happens when you eat gluten. Okay, yes, there are MANY symptoms of celiac disease as well as Non celiac gluten intolerance. Repeatedly we hear migraines, joint pains. gastro & infertility! Over & over & over again! Those would be among the most commonly reported from what I've read on here.

 

There would be one reason that I could think of to get an official dx & that would be if you have kids in future & 1 or more shows symptoms of celiac then if you were dx'd, it would make it easier for you to get a dx for the child or children. Otherwise, you might have problems getting the docs to take you seriously & consider any child you have could possibly have celiac. 

 

You know how hard it is to get a dx & how hard is to get a dx when you have dh. 

 

As to any drug to help. Dapsone. But I would advise you to research it throughly before you leap. There are some real repercussions & considerations & you need to be carefully monitored while taking it. Also, if you're allergic to sulfa drugs then you probably won't be able to take Dapsone as it's in the sulfa class. Many here have tried it & had awful  side effects & had to give it up. Some have used it quite successfully. 

 

You can try limiting iodine. See thyca.org for a low iodine diet (minus the gluten foods of course). Check vitamins for iodine content also.

 

Oh, btw, you wouldn't believe how many who had infertility problems & once they were gluten free for a while & the body has a chance to heal, they were able to successfully conceive & have healthy children. So don't think you're out of the game on that score.  :)

Thank you squirmingitch! That is so encouraging to hear. I have seen people with mixed reviews about the Dapsone. I think I would probably want a dx before trying something like that just in case I had a reaction to it. I do have allergies to some other medications so that's also good to know. Also I checked out the photo board and I realized I've got DH all over my hands but I didn't know what it was because those blisters come up in tiny clusters instead of large open sores like on my legs. Now that I know what it is I'll stop touching it!! Thank you guys for all of your help. This forum is a life saver. It's nice to know I'm not alone and other people understand :)

squirmingitch Veteran
squirmingitch
Posted

You're so welcome!

 

Just be extra careful not to get cc'd. It can take ages for the antibodies to get out of the skin & every time you get cc'd it puts more of them under your skin. You want to heal, not take steps backward.

lanhamae Newbie
lanhamae
Posted
  • Author

I am trying very hard to not get cc'd! I've realized once the hard way that it's NOT worth it! haha. Does anyone have any advice for what to do to help with the itching in the short term if I do get glutened or cc'd? I put an ice pack on the area last time and it helped a little bit with the urge to scratch. I just didn't know if that was bad/harmful for already broken out skin or if anyone else had a better idea.

BlessedMommy Rising Star
BlessedMommy
Posted

If you can tolerate Benedryl, that can be helpful. One time when I got a flaming itchy face I took Benedryl for it. The Benedryl knocked the itching and burning out. I also got the rare side effects from the Benedryl, though, which was no fun.

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BlessedMommy Rising Star
BlessedMommy
Posted

Oh and I understand the frustration of doctors writing off your condition as eczema. My primary gluten symptom was a severe skin rash and my dermatologist just DX'ed it as eczema and sent me home with a prescription for steroid cream. It took me experimenting on my own to figure out that it was food triggered.

squirmingitch Veteran
squirmingitch
Posted

Ice packs won't hurt the rash at all & if it gives you relief then great! Soaking in a hot epsom salts bath helped me too. Here's a link too:

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/

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