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Giving up on diagnosis

Jlewisrn

By Jlewisrn
in Dermatitis Herpetiformis

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Jlewisrn Contributor
Jlewisrn
Posted

I have been dealing with a rash for over a year now. I have been to multiple doctors who have diagnosed me with everything from scabies, eczema, allergy to a medication, razor burn ?, and Now idiopathic chronic hives. I have thought from the beginning it was something I was eating. I decided to cut out gluten and it got better. However, I was never very strict unless I was at home. Not intentionally I just didn’t request certain things to be done to avoid cross contamination. I noticed when I ate at home I had fewer breakouts. I have decided to be a fanatic about not eating gluten and get to the bottom of this once and for all. So far I am in my 4th day of a “good skin day”. The only time I have gone that long is when I was on prednisone for 60 days. I really wanted a diagnosis but it doesn’t look like I’m getting one ;( I don’t know if it’s DH or hives caused by intolerance or something but I know cutting out gluten COMPLETELY seems to work. Oh and I have a question. Can anyone else tell if they are going to have a “good skin day” I know that sounds weird and it’s hard to explain. I can almost tell in the morning how my skin is going to feel that day. Like I have a tingeling feeling or something. Not really like that it’s just something different. I am very intuned to my body and aware of what is going on with it and it seems like I just know somehow like something is slightly different. My rash has changed over the course of this year. It has gone from my legs looking more like a rash to my legs, arms, lower stomach and chest and looks more like hives. anyway, I love the information I get here. Thank you all 

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plumbago Experienced
plumbago
Posted

Yes, I know what you mean about being able to anticipate things like having a good skin day. As you note, it’s being very in tune with your body. Who knows why that is - some complex interplay between organ and brain facilitated by one receptor or another. It’s for others to figure out, not me!

As to figuring out whether or not your rash is DH, has any dermatologist ever done a punch biopsy at the site? I think that is one of the best ways to find out. Talk to your doctor to learn more, would be my recommendation.

Sometimes you just gotta sit back and, if it’s not critical, wait and see, listen some more, do some reading, podcasting, and then wait some more. Answers may not be immediate, but in one way or other, the situation usually gets resolved. Sounds like you are doing what's necessary to get there.

Jlewisrn Contributor
Jlewisrn
Posted
  • Author
51 minutes ago, plumbago said:

Yes, I know what you mean about being able to anticipate things like having a good skin day. As you note, it’s being very in tune with your body. Who knows why that is - some complex interplay between organ and brain facilitated by one receptor or another. It’s for others to figure out, not me!

As to figuring out whether or not your rash is DH, has any dermatologist ever done a punch biopsy at the site? I think that is one of the best ways to find out. Talk to your doctor to learn more, would be my recommendation.

Sometimes you just gotta sit back and, if it’s not critical, wait and see, listen some more, do some reading, podcasting, and then wait some more. Answers may not be immediate, but in one way or other, the situation usually gets resolved. Sounds like you are doing what's necessary to get there.

I have had 2 biopsies but of the rash itself not the way it should be done for DH. I asked and both times was told “it’s not DH” so they wouldn’t even consider it. I give up :( 

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