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23 And My Body Is Decomposing


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22 replies to this topic

#16 pricklypear1971

 
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Posted 17 December 2013 - 03:50 PM

Have you seen pics of plaque psoriasis? Do you think your lesions look like that?
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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!

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#17 BlahSoDepressing

 
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Posted 18 December 2013 - 07:25 AM

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. 


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#18 pricklypear1971

 
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Posted 18 December 2013 - 09:43 AM

There are other autoimmune skin rashes that are bilateral. I don't know if that's good or bad news.

I've always said not to judge a rash for dh based on appearance, but by reaction.

Do you react to iodine rich foods like egg yolks, asparagus, seaweed? If you react (rash flares) that's an indicator of dh.

Have you read about differential diagnoses for dh? I wonder if any if those rashes would look similar.
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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!

#19 BlahSoDepressing

 
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Posted 18 December 2013 - 10:06 AM

There are other autoimmune skin rashes that are bilateral. I don't know if that's good or bad news.

I've always said not to judge a rash for dh based on appearance, but by reaction.

Do you react to iodine rich foods like egg yolks, asparagus, seaweed? If you react (rash flares) that's an indicator of dh.

Have you read about differential diagnoses for dh? I wonder if any if those rashes would look similar.

 
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. 
 
24g0kdc.jpg
11l23nn.jpg


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#20 pricklypear1971

 
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Posted 18 December 2013 - 10:20 AM

But what happens if you STOP the seaweed and other high iodine foods? That's the big question, since you're eating so much.

I wished many times for Dr. House.

If they didn't specifically look for iga pattern dh they wouldn't see it. You'd have to ask the lab if the correct biopsy/solution was used and if it was looked at (dh is a visual dx of stained skin). The difference between linear iga disease and dh is evidently the pattern (and gluten...).

Again, dh dx is an opinion (sort of)not an antibody test. It's subject to interpretation of the person running the lab test.
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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!

#21 squirmingitch

 
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Posted 18 December 2013 - 05:37 PM

I don't understand why you have been off gluten for 2 weeks when I told you on Dec. 10th that YOU MUST BE ACTIVELY EATING GLUTEN UNTIL THE BIOPSY OR  YOU WON'T KNOW IF IT'S A FALSE NEGATIVE OR A TRUE NEGATIVE.

I am afraid you are working against yourself here. You seem to want a correct dx so badly yet you have in essence sabotaged your chances by going gluten free.


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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.

 


#22 BlahSoDepressing

 
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Posted 20 December 2013 - 07:13 AM

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. 


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#23 pricklypear1971

 
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Posted 20 December 2013 - 10:42 AM

I understand. I really hate them, too. My body did NOT like them.

I really don't know anything about eczema, except it IS an autoimmune disease. Here's a link about eczema and celiac http://celiacdisease...a-Treatment.htm

Just out of curiosity, you may try this cream. http://chronichives....n-cream-recipe/

If it helps you, it would be informative...because it's a mast cell stabilizer. I tried it for mine and it helped a bit at a certain stage. If you get a great deal of relief, I'm sure that would be meaningful. The site has interesting info on antihistamines, etc. probably worth a read.

I'll tell you what my dermatologist told me..."this rash is an autoimmune reaction". Autoimmunity is the root of the problem. If you treat or fix the root problem, you may get a handle on the rash. For me it was gluten/dh. I do know if my Hashimotos is under/over treated my rash pops up, too. So, another ai condition could cause your rash to pop up - your body "freaking out", so to speak.
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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!




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