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Simone52

Member Since 22 Jul 2013
Offline Last Active Sep 07 2013 10:03 AM
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Posts I've Made

In Topic: Dapsone ~ Members Taking Dapsone Please Respond.

25 August 2013 - 12:59 PM

I was diagnosed with DH seven years ago. I have taken dapsone since. All of my skin issues are healed while increasing my dosage to 100mg. Any Lower dosage does not work. Topical dapsone does not work. I am now having severe blood problems. I knew of the side effects. I now have low blood platelets, low rbc count, low hemoglobin . Dapsone is a powerful drug and has zapped my energy. Is there a substitute drug for dapsone. Following a GLUTTEN free diet with my work schedule is virtually impossible.

Dear RFJ

 

I am curious to know why a gluten-free diet is impossible for you?

 

Just curious.  

 

How can we help?


In Topic: Dh And Medication

24 August 2013 - 03:41 PM

 

Welcome to the board!

First, your rash is not going to go away overnight or in a week..... it takes time. You need to make sure your kitchen & everything you put in your mouth is totally gluten free (gluten-free). DH is sensitive to the tiniest amount of gluten. And you need to make sure all your meds both prescription & OTC are gluten-free. NSAID's aggravate the rash. Iodine intake can be a factor --- most of us find it makes the rash go crazy. Steroids will calm the rash but the second you stop them the rash will make you pay in spades by coming back w/ a vengeance! 

 

First, get your home & food in order. See:

Newbie 101 for celiacs
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
And read lots & lots of threads here on the dh forum. Then you will begin to understand what you're up against.

 

Hi Brookiebaby!  

 

Sorry you have joined the world of Celiac.  Not a fun club.  But a glute-free diet is going to make you feel new again.  Some of us are more sensitive to gluten than others.  Some of us cannot lick an envelope.  Some of us can.  It will take some time for you to sort out what you can and cannot do/eat/use/take.  

 

I assume that since you are newly diagnosed, you have had some serious symptoms.  Usually digestion.  Rapid transit. And pain.  And malabsorption. If you are lucky, you have caught it early enough that there may not be permanent damage.  I was diagnosed at age 40.  The secondary problems are many.  But more about me later!

 

Tell me (us) about you.  How old are you? (approximate is fine!)  How long have you been exhibiting symptoms?  Absolutely miserable or: kind of yucky or:  this and that weird symptom or:  almost incapacitated for years.  This evil disease can take many forms.  The exciting and great news is that you can recover.  In many cases 100%!

 

Do not for a moment think that the symptoms (evil demons :ph34r: ) will go away after a few days or even weeks or months.  It will take some time.  It has been wreaking havoc on you and your body for a long time.  Be patient.  Do not for moment think either that you can change your diet a little.  Or just modify. Or just reduce.  Or eat something on a special occasion.  Or just on the weekend.  This is serious business and if you want this rash and any other symptom to go away you have to get every speck of gluten out of your house!  Stay away from restaurants for a while if you can.  Things are much easier these days and restaurants are certainly more aware but the more thoroughly you can eliminate any possible trace of this stuff the faster and easier will be your recovery.  

 

Again, there are many silver linings.  There are intestinal diseases that cannot be controlled with diet.  This can be.

 

The rash sucks.  Period.  It is insidious, crafty, mean and determined.  Many of us have been playing around with it for years.  Some things work for one, not for another.  It will be a guessing game for you for a while.  It could leave you in two weeks or hang around for two years.  There are many wonderful suggestions on this Board for itch relief and pain control.  Again, what works for me may not for you.  We are all unique. 

 

As for medications.  Most can be researched on-line.  Trazadone is used for sleep issues and depression.  There are alternatives for both if you are not happy with it.  But I can definitely tell you that there is no way that two days of a gluten-free diet will tell you anything yet.  Don't get discouraged.  Be diligent. I would love to hear your progress.  Even day by day.  Keep in mind that you will not just regulate your diet.  You will completely change it.  (you will love the results)!

 

YOU ARE NOT ALONE!!  There are so many here that will hold your hand (itchy as it is!) and walk you through each of your fears, experiences, questions, discouragements and victories!

 

Stay tuned......

 

Be well....

 

Simone :P  


In Topic: Gluten-Free For 20 Years With Rash From Hell

16 August 2013 - 12:21 PM

Maybe someone has already suggested this...but could it be an IgE allergy to baker's yeast, Saccharomyces cerevisiae? (That's different than a candida overgrowth problem.) Do you have any other allergy symptoms - coughing, stuffy nose, itchy ears, swollen tongue - after eating fermented foods like vinegars, alcohol, hard cheeses, etc.? It might be worth trying to avoid all baked goods with yeast and all fermented foods for a week to see if it helps. If it does help, an allergist can order an IgE test for a baker's yeast allergy. Then again, if vinegar seems to be helping your rash, I guess a yeast allergy would be unlikely, but you never know. If you're going to get allergy testing anyway, it couldn't hurt to ask.

 

I'm a little confused about the different types of reaction to Saccharomyces cerevasiae, but research has shown higher levels of antibodies against it (ASCA antibodies) in celiac as well as in Crohn's. Three article links are below, but a PubMed search yields a lot more. ASCA antibodies seem to be different than an IgE allergy, though. Anyhow, from what I've read it sounds like either one can cause rashes (?).

 

http://www.ncbi.nlm..../pubmed/8472187

http://www.ncbi.nlm....pubmed/18496744

http://www.ncbi.nlm....pubmed/12405161

 

I'm going down this path myself because I've had the same type of horrible, itchy rash for 30 years. I was diagnosed with eczema as a child, but the eczema creams never helped and I have scars on my arm from scratching it. Later it spread to my legs, stomach, and scalp and would cover large areas of my body for months or years at a time. It was never biopsied to check for DH because my doctors always insisted it was just stress, and now I'm gluten-free so it's too late. My celiac tests were negative even though symptoms and family history all strongly suggested celiac, so we're still trying to sort out whether I have extremely strong NCGI or whether I'm actually allergic to some food that's usually found in wheat products. My tongue swelled up during my gluten challenge and has remained swollen for the last three months even while strictly gluten-free, which is what led to the allergy testing now. Both my tongue swelling and my rash flare up several hours after eating anything with vinegar, any gluten-free processed foods with yeast (even from dedicated facilities), alcohol, cheese, dried fruit, and many ripe fresh fruits. The coughing and itchy ear symptoms are immediate, but there seems to be a delay before it worsens the rash. It will be a few weeks before I have my results, but I'll post back here later if anything useful turns up.

I wonder if HRT could be the culprit in my case.

 

I am not eating anything with yeast right now.  I AM drinking red wine.  But that doesn't contain yeast.

 

I know I have a reaction to Kiwi. Itchy ears, mouth.  Also, some anchovies.  It seems that the better ones don't bother me.  But I haven't touched either of these for a few months.


In Topic: Gluten-Free For 20 Years With Rash From Hell

16 August 2013 - 05:28 AM

Stress!??  What stress??  Let's see, my mother died last November after I had to basically kidnap her to bring her across the country to place her in assisted living.  Why kidnap?  Chartered jet and all?  Because my nephew had been financially exploiting her for about ten years.  About 1/2 million gone. Let's see, stress? then my husband and I separated after 20 years because he doesn't get the concept of no dating after marriage!  But hey!  I'm good!  I am trying to sell some property in NYC (I'm in the midwest) and I have had 2 deals fall apart.  My daughter is getting married in February.  I have been coping with post-menopausal bleeding and have to have a biopsy soon.  Ultra-sound ruled out ovarian cancer.  I am perfectly fine!  No stress.  That's just silly :o

 

And then there is the the "don't think about it".  When it's calming downing I worry that it will come back.  When it's flaring I worry that it will never go away.  But what, me worry??

 

You know, maybe if we all try to embrace this rash.  You know, love it.  Try to pretend that we love the itch and welcome it when it flares.  Oh, there you are, you sweet rash!! I've been missing you!  Reverse psychology.  Same concept with weeds.  They are only weeds because we don't want them.  I know in my heart that if I loved dandy lions and TRIED to grow them, they would disappear. We've all tried everything else!

 

So for today, hello!! darling little rash!  

 

I have an appointment with a naturopath but he can't see me until January. I am calling an allergist/immunologist today.

 

So once again, thank you all for listening and caring.  Honestly, I am too embarrassed to talk to anyone else.  I feel all whiney and "poor me"  You know, you get together with your friends and they say, "how are you?" you respond, "I'm great, thanks!"  So thanks for letting me say "the ****ing rash is back and I'm obsessed with food and feeling so blue!!" (a little blues guitar riff now!)

 

Anyway, thank you again.  I have fallen in love with all of you.

 

xoxoxoxoxo

Also, I am still loving straight ACV on a cotton ball applied directly. 


In Topic: Gluten-Free For 20 Years With Rash From Hell

16 August 2013 - 05:14 AM

Not to have this get mucked up with the drug treatments above; I post this separately.

 

For anyone who can afford it & who wants to test certain food items there are test kits available:

 

http://www.ezgluten.com/

 

http://glutenfreecoo...utentestkit.htm

Stress!??  What stress??  Let's see, my mother died last November after I had to basically kidnap her to bring her across the country to place her in assisted living.  Why kidnap?  Chartered jet and all?  Because my nephew had been financially exploiting her for about ten years.  About 1/2 million gone. Let's see, stress? then my husband and I separated after 20 years because he doesn't get the concept of no dating after marriage!  But hey!  I'm good!  I am trying to sell some property in NYC (I'm in the midwest) and I have had 2 deals fall apart.  My daughter is getting married in February.  I have been coping with post-menopausal bleeding and have to have a biopsy soon.  Ultra-sound ruled out ovarian cancer.  I am perfectly fine!  No stress.  That's just silly :o

 

And then there is the the "don't think about it".  When it's calming downing I worry that it will come back.  When it's flaring I worry that it will never go away.  But what, me worry??

 

You know, maybe if we all try to embrace this rash.  You know, love it.  Try to pretend that we love the itch and welcome it when it flares.  Oh, there you are, you sweet rash!! I've been missing you!  Reverse psychology.  Same concept with weeds.  They are only weeds because we don't want them.  I know in my heart that if I loved dandy lions and TRIED to grow them, they would disappear. We've all tried everything else!

 

So for today, hello!! darling little rash!  

 

I have an appointment with a naturopath but he can't see me until January. I am calling an allergist/immunologist today.

 

So once again, thank you all for listening and caring.  Honestly, I am too embarrassed to talk to anyone else.  I feel all whiney and "poor me"  You know, you get together with your friends and they say, "how are you?" you respond, "I'm great, thanks!"  So thanks for letting me say "the ****ing rash is back and I'm obsessed with food and feeling so blue!!" (a little blues guitar riff now!)

 

Anyway, thank you again.  I have fallen in love with all of you.

 

xoxoxoxoxo