I've actually been on and off of gluten for about three years. Way before the idea of celiacs came into mind. The only reason why I didn't start eating gluten was because my appointment was 4 days out. I thought that that wouldn't be enough time to consume enough gluten to get an accurate result.
Went to the doctors yesterday. When I mentioned that it might be celiacs, he looked at the scabs and immediately ruled it out.
In his opinion he said that he was infected eczema. He said it in a way that he was pretty sure. But then again, the previous doctor also thought it was bug bites.
My brother says I should stop being so negative and that I have to believe that this will work. My response to that was I believed that the first doctor knew what hew as doing, that I believed that the second doctor will cure me, and that I was even fooled again by the third doctor.
He was getting a bit frustrated because I was questioning his prescription. Why shouldn't I do. He prescribed me a higher dose of pred. If the second doctor already gave me pred and was only a temporary fix, what makes this doctor think that upping the dose will solve anything. I was asking what the back up plan was if this didn't work. He said just wait two weeks for the check up and that it'll most likely work. Thats what the previous doctor said and then I developed muscle pain from the augmentin.
I mean I guess there is a chance that it'll work. He prescribed me another antibiotic with the prednisone.
I know prednisone is a drug that is a temporary fix. When I explained I would like to not take steroids, he said that this was the best plan.
I really hate steroids.
Bleh. And the stress continues. I eat a lot of dried seawood and it doesn't seem as though its getting worse or better.
I am attaching the two biopsy results I received. The culture was negative, as I mentioned, but the test for bullous, or auto immune ( i forgot which) also came back as negative. The skin was taken right next to one of my blisters. Again, I can't tell if it came back negative because I was on pred a few weeks before or whatever. I just want to know whats happening to me. I wish there was a real life Dr. House. Hopefully my appointment at Hopkins will go well tomorrow. My pessimistic side says probably not though. Three derms already checked and they didn't know what was going on.
Yep, I googled it yesterday as soon as you mentioned it. Honestly doesn't look like it.
I've been holding out hope that this isn't DH and that its just bug bites because from the photos I see of DH, this doesn't look like it either.
But then I realized that if it shows up on one side, it shows up on the other side and makes me think again that I have celiacs.
I did and they thought it was from bug bites/skin infection.
So far I taken two antibiotics and they both did not work.
Augmentin, the one I last took, actually cause muscle pain. Had to go off of the meds three days into treatment.
So updates. I have an appointment at Johns Hopkins, which is one of the top hospitals in the country. I mention that because even though I say its really good at dx'ing, Im a bit afraid that they won't be able to figure out whats wrong with me.
With everybody saying tests can come back negative from the simplest of mistakes, whether its the wrong area or because I was on steriods or haven't been eating gluten, has me scared that they'll get a negative when I'm a positive.
Im hoping that because they're such a leader in dermatology that they would know how to correctly dx this but still, im afraid that they might do the test and it may come back as negative and i'll be at step one again.
The appointment is for this coming wednesday. I've been off gluten for about 2 weeks now. Been off the mupiricon and pred for a while now. I would say about a month. The lesions are getting bad. For some reason, they keep scabbing over white. The pics in the OP was taken november 23rd. Three weeks later, it has gotten to the point of these.
Thank you for taking the time out to write those responses.
I'll probably slow get on it. Don't want to seem difficult, just not in the right state of mind at the moment. Don't want to come to grips on whats actually happening.
Hello. I got diagnosed by an rheumatologist. Had blood work done, came back positive for HLA-B27. This was after getting an MRI done. Had a slight fusing somewhere in my spine. I went to the rheumatologist because I experienced these pain in my buttocks region. I thought it was from overdoing it in sports but after stretching it still persisted. Got to the point where I couldn't get in the car. Some days it was better, other days it was hell. Worst part was it would travel to one side to the other.
Regarding celiac. I actually stumbled across this disease today. I googled "rash came back after prednisone." One of the results came back with DH, after reading a bit about DH I thought to myself "hey, that really sounds like what I have." Of course I was and still am in denial that I can have ANOTHER disease in addition to my AS.
I guess there is nothing I can do but to slowly accept it. The doctor called today regarding my culture test and he said it came back negative for bacteria so I guess the chances are quite high that this is autoimmune. My second skin biopsy will come back in a few days or so. I keep telling myself "the first biopsy said bug bites. Why is this happening to me."
1. Yeah the itches start with nothing there. As I itch them a bump will appear.
2. I have about 15 "bite" areas. Only three blistered. But they were pretty big blisters. Like half the size of a gobstoppers. The areas that don't have scabs, its like these dots/bumps. Worst part is, the scabs AREN'T healing at all. So weird.
3. Yep. At least three are bilateral. Read about this this morning as well. Once I got past the initial denial and anger, I was pretty fascinated that my body could have a disease where it could mirror these rashes. Pretty cool.
4. Which biopsy? I had two done. The first time it was biopsy then pred. for 10 days. For the second one, I've been off pred for about 2-3 weeks now.
5. Yeah these areas burn but only after I itch it. I know its bad to itch it so I try to itch the skin around it. It still ends up weeping a bit though.
Regarding the GI question, not sure to be perfectly honest with you. Never thought about it.
I mean I guess it could be worse. I could still have bullous disease. My only concern is, I hope I don't have a disease where it will leave permanent scarring thats visible everyday.
In a pretty depressed state at the moment. Not sure if this will help (venting) but what the hey.
So I was diagnosed with AS when I was 19. Luckily it hasn't crippled me or anything. I have occasionally pain in my buttocks and sometimes have trouble sleeping from back pain but overall, it could have been worse. To be perfectly frank, still haven't come to terms with having AS. I mean, lets be real, at the young age of 23 its hard to really grasp that you have this rare disease.
5 months ago I was getting bit by mosquito left and right. It didn't help that I would go play soccer in high grass but I digress. My bites were pretty bad and it didn't help that I had a tendency to try to "squeeze out" the mosquitoes saliva (silly I know. But its something I always did since I was young). Usually these squeeze out sessions would heal in a week or so but for some reason three bites did not go away. It actually swelled into a blister. I didn't freak out at this point because according to youtube, alot of people get blisters from mosquito bites.
When it DID start getting alarming was that it started forming on my arms. These itches. They weren't to the point where I couldn't sleep at the night but it was pretty itchy. As I started getting, what I assumed were bites, on my arms. It started slowly coming on my body.
I ended up going to a derm. I didn't want a skin biopsy done because I mean, lets be serious, even though its a small operation, its an operation none the less. I was prescribed mupirocin for two weeks. It worked alright but the sheer number of "bites" i had made it impossible to put it on every single mark.
After three weeks, I began to get more and more bites. A single one developed mid back, a couple on the underside of my thighs, which doesn't heal but it makes contact with the chair every time I sit. I decided to go to another derm, one who has more reviews. He looked at me and recommended I do a punch biopsy. At that point I agreed because I needed to get to the bottom of this. He prescribed me prednisone for 10 days. Surprisingly the pred. worked, but I wasn't happy with it because if it was up to me, I would like to avoid steroids. On the eighth day onward, the little "bites" or rashes started to come back. I connect this with that fact that it was a tapering dose so as the strength was tapering down, it wasn't strong enough to combat the rash anymore.
I received a call from the doctor who said the results came back. Not cancer (yay! Never assumed it was though) and that the results show a reaction from either drugs (don't do) or bug bites (which I assumed).
Problem was, for bug bites this seemed too weird. I've had these bites for the past 3 months now.
After the derm seemed genuinely stumped, I decided to go to another well rated derm. He looked at my scabs, I gave him the information that I was provided from the past two derms, and he confidently said "its a skin infection. Probably from the bug bites. Take some cephalexin and this will clear right up. If the scabs are weepy, put the mupirocin on." With that, I was on my way.
Unfortunately the cephalexin didn't work. Now the mupirocin has lost its effect. I mean what do you expect, it was only supposed to be used for two weeks but I've been putting it on for the past 3 months on and off.
I went back to the most recent derm and voiced my concerns. This is when he said it might be bullous (disease :/ ) or another type of infection. I told him that I was tired of wasting my money and to do whatever test is required. We ended up doing another punch biopsy (this one to send to see if I have an autoimmune disease) and a culture. He prescribed me some augmentin (two days in. Not sure if its working) and some cormax. He explained that if the cormax works then it might be an autoimmune. If the augmentin works, its just a infection. Of course I just bought the augmentin. If the cormax works, I can safely assume that I have ANOTHER autoimmune disease (lucky me). Yes, the results will tell me either way in a few days but I want to live in ignorance until then.
My ear cartilage, both sides, started getting these scabby thing. Doctor said it was dry skin initially. Like all the other derms. he was wrong, it started getting worse. Started weeping at some parts. Im at the point where Im nervous I'll have to get something amputated because these wounds have been open so long and it just never scabs, which is the opposite of some wounds which have become thick white scabs, either from the constant cream application or infection.
I keep asking myself "why would my skin biopsy come back as bug bites though? WHY"
With all that being said, I hope I get hit by a car or something cause having two relatively rare diseases absolutely blows.
Here are some fun pics to guide you through your day. Have a wonderful day guys!