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23 And My Body Is Decomposing


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#1 BlahSoDepressing

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Posted 09 December 2013 - 08:51 AM

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!

 

zogew6.jpg

28vvj21.jpg

35koo5s.jpg

28iaz9y.jpg

11vqpvt.jpg


Edited by BlahSoDepressing, 09 December 2013 - 09:29 AM.

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#2 IrishHeart

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Posted 09 December 2013 - 05:26 PM

Those are not "bug bites" hon. They look like blistering lesions to me. IMHO

 

Who Dxed you with AS? Are you positive for  HLA-B27?

 

(I supposedly had "undifferentiated spondyloarthropy" too, but I don't)

My severe back, bone and joint pain was caused by celiac

and malabsorption and osteoarthritis. A few disc issues from a car crash.

 

It's greatly reduced now--off gluten and healing ---and physical therapy for 2 years.

I could not walk, sit or lie down without excruciating pain. That's gone for the most part..

 

But at one point, the rheumy wanted me to take methotrexate for the rest of my life.

I don't need it.

My point is...have you been tested for celiac?

 

What symptoms are you experiencing?  


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 squirmingitch

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Posted 09 December 2013 - 05:33 PM

Okay, 1st off, who dx'd you with AS? What kind of doc? What tests did he/she do? And why did you go to that doc in the first place? Can you detail that more for us please? And by AS, you mean ankylosing spondylitis right? 

Do these places itch BEFORE you notice anything there? You itch & look & there's nothing there????? Then later the "bite" comes. Do you always get blisters or some are & some are not? Do they present bilaterally? Echo themselves on each side of the body? Some do, some don't?

What time period lapsed between the prednisone & the biopsy? And what exact tests were performed on the biopsy? Get copies of your med records & the test results & post them please.

Do these places ever burn or sting, maybe at the same time they itch, like a sting/itch combo?

Do you now or have you ever had any GI issues. Before you answer that --- at 1 time I would have said no b/c I thought what I had was normal as in --- everyone has to be "off" sometimes right? Maybe it was this I ate or that I ate or that I was upset or stressed out. So now, answer the question please.

I see while I was typing that IrishHeart has posted. So we're both asking about the AS dx.

 

And BTW, those look very much like they could be dh.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#4 BlahSoDepressing

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Posted 09 December 2013 - 06:50 PM

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."

 

@squirmingitch. 

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. 


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#5 BlahSoDepressing

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Posted 10 December 2013 - 06:06 AM

Forgot to mention that on a itchyness scale of 10. My itches are about 3 or 4.


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#6 squirmingitch

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Posted 10 December 2013 - 06:26 AM

I'm super pressed for time at the moment but will get back to you asap. A couple things for now. IF YOU WANT TO GET AN OFFICIAL DX OF CELIAC DO NOT STOP EATING GLUTEN. DO NOT EAT GLUTEN LIGHT. You will have to be off the oral steroids for about 3 months & the topical for a bare minimum of a month. It's very difficult to get a celaic dx when you have dh as the celiac blood panel turns up a false neg. 60% of the time for those of us with dh. Your best bet is a dh biopsy but it has to be done correctly. Not ON a lesion but on clear skin adjacent to a lesion & there is more to that but will have to get back to you later.

 

I suggest you do get tested for celiac disease. A dx of dh IS a dx of celiac. 

 

Best thing for you to do right now is to read thread after thread on this dh forum & you will learn all of what you need to know, otherwise I will have to have time to type everything out for you.

 

From my understanding, just having the HLA-B27 gene does not mean you have or will get AS but that you at least have the gene for it & it's something like 1 or 2% of those with the gene actually have AS. So it's still kind of up in the air of you truly do have AS or not. You could be misdiagnosed. 

 

I'll get back to you when I can.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#7 IrishHeart

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Posted 10 December 2013 - 06:31 AM

I urge you to get a second or third opinion on the AS diagnosis. One thing I have learned is...they get it wrong sometimes!

 

Please, get tested for celiac. You need a biopsy for DH done.

 

If, in fact, undiagnosed celiac is fueling the pain situation, if you go on a G F diet, you could reduce the pain.

 

It's worth investigating, IMHO.

Being positive for certain genes associated with various AI diseases, does not mean it's a done deal. It's just a "risk factor".


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 squirmingitch

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Posted 10 December 2013 - 10:45 AM

On the 1st biopsy you had, the derm was checking for cancer & that means he took a biopsy directly ON the lesion. There was no biopsy for autoimmune or dh done so that biopsy doesn't count. 
 
The second biopsy doesn't count b/c you had been on steroids. He says he did a test for autoimmune but you had been on steroids --- this will make false negatives. Why don't they know that?
 
Seriously, if I had to choose between having AS or celiac disease; I would choose celiac disease any day of the week. With celiac, once you're on the gluten-free diet then you begin to heal & you don't have to take any meds for it & it won't get worse as long as you're gluten-free. So I'm hoping for you that the AS is a misdiagnosis & you have celiac instead, I know that sounds odd to say but..... I mean the best for you.
 
I really want you to read these 2 threads all the way through & also the links they contain:
 
 
 
 
 
Here's some info. for you.
 
A dx of dh is ALL you need. No GI biopsy or bloodwork needed.
 
 
 
 
DH BIOPSY INFO.
 
I will mention that dh can & does appear anywhere on the body so don't let the elbows, knees & buttocks throw you. It appears anywhere.
 
Labs & biopsy for dh:
 
DH confusion with linear IgA bullous dermatosis
 
Symptoms of celiac disease
 
Be sure to read all 3 of these links & print them out to take to the derm:
 
 
 
 
MORE:
http://www.celiac.ni...Dermatitis.aspx  forget what they say about it's location on the body --- that's bunk --- we who have it can tell you it appears anywhere it darn well pleases & while it does appear where they say that's not the ONLY places it appears & not necessarily the first or most frequent places. You might want to print a copy & take it to the derm.
 
 
 
 
 
 
 
 
 
And the rash does not ALWAYS present as water filled blisters --- that happens when you've got it BAD. 
 
The use of either topical or oral steroids within 2 months prior to the biopsy will make the biopsy negative whether it truly is negative or not.
 
Also, one MUST be have been & continue to be eating a full gluten diet or outhe biopsy will turn up negative. If one is "gluten light" the biopsy will turn up negative. You can't just eat a few crackers the day or for a few days before the biopsy --- that will not work. YOU MUST BE EATING A FULL GLUTEN DIET.
 
And finally, here is the current FULL celiac blood panel:
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 
 
The DGP test was added recently to the full panel.
 
 
Also can be termed this way:
 
Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG
 
And if you got a endoscopy then it needs to have 5-8 biopsies taken not just one.
With dh, we still get the intestinal damage but tend to have few & mild GI symptoms compared to celaics without dh. With us, the disease presents in the skin & this is why the blood tests turn up false neg. for us so often. The antibodies get deposited under our skin.

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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#9 nora_n

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Posted 11 December 2013 - 08:56 AM

The biopsy for DH will mostlikely be negative if it is near the blisters; it should be taken far from the blisters, and they recommend behind the knees or inside the elbows. The reason is the rashes use up IgA and they must biopsy a spot with IgA still intact


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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#10 squirmingitch

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Posted 11 December 2013 - 01:26 PM

Nora, could you please provide a link or reference for that info.? This is the 1st time I've ever heard the biopsy should be taken far from a lesion or behind the knees or inside of elbows.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#11 BlahSoDepressing

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Posted 12 December 2013 - 10:01 AM

Hello,

 

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.


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#12 squirmingitch

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Posted 12 December 2013 - 11:45 AM

YVW! :)

 

No worries mate; everyone has to go at their own pace. We're here when you need it.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#13 BlahSoDepressing

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Posted 17 December 2013 - 02:17 PM

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.

 

2vuxbt3.jpg

334oep4.jpg

dcyjww.jpg

259vhvm.jpg

27zhetg.jpg


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#14 pricklypear1971

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Posted 17 December 2013 - 03:05 PM

I'm sorry, that looks so uncomfortable.

That reminds me of plaque psoriasis. Did you have the plaque when you went to the doctor?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#15 BlahSoDepressing

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Posted 17 December 2013 - 03:44 PM

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.


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