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sisterlynr

Member Since 20 Oct 2012
Offline Last Active Dec 30 2013 04:55 PM
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Topics I've Started

How Long And How Much Gluten Needed For Gi Test?

18 November 2013 - 11:55 PM

I have a diagnosis of DH and Lupus but none of my doctors agree as to what is causing 'the rash'. One biopsy indicated a pointer to Lupus and none of the 8 biopsies showed DH although only 2 were done properly for DH.

 

I am scheduled to meet a new GI in December and hopefully she will combine a Colonoscopy and EGD procedure, the same day.  I will ask the GI to biopsy via EGD and maybe that will settle the Celiac DH issue.

 

 I have not been lesion free since Feb 2012 although I have been gluten-free since Oct 2012.  I have had minor relief but then all symptoms renew.  I'm on mega histamine blockers so that is helping me keep my sanity.

 

If the procedures are scheduled in mid December, when should I add gluten back to my diet?  How much should I intake?  

 

Thanks for any information.  I'm sure someone has been in this same situation.


New Doctor, New Diagnosis? Rule Out Dh?

22 June 2013 - 03:16 AM

Here we go again! 

 

I stopped taking Dapsone on June 10th after an increase of rash.  Maybe I'm allergic to Dapsone?  Maybe this isn't DH? 

 

I was seen by a new doctor Friday.  First let me say he has diagnosed Celiac for many patients that had fallen through the cracks by their regular doctors.  He was knowledgeable of Celiac and DH but had never seen DH in person.  He did know how a biopsy should be next to a lesion and all that . . it was refreshing to know he had a handle on this condition.

 

I have posted about having Diabetes, how the rash had many forms, how I did not respond to Dapsone as I have new lesions, bubbly rash and in most cases, the skin clears fairly quickly when taking Dapsone..  I had some relief for a month but the rash never cleared and the symptoms only became manageable.  With all my past and present issues, he gave me a game plan.  Let's start from scratch (no pun intended) and see if we can solve the puzzle.  I'm good with that!  He tells me I have many, many symptoms of systemic Candida or Yeast.  I do not have the 'usual' problem that us ladies have with yeast.  Here is our game plan.

 

  • Started a daily dose of Diclufan for 14 days (the pharmacist sure was inquisitive)
  • Absolutely NO sugar, fruits, dried fruits, dairy, refined grains or peanuts
  • Eat high protein, low glycemic carbs only - organic chicken or organic beef
  • Garlic - one clove a day or 10 mg of allicin capsule
  • Take 200 mg of oil of oregano 2 x daily

If this a systemic yeast issue, I should feel pretty lousy by the 3rd day.  His explanation was the yeast would be dying and of course a reaction to no sugar.  By the end of 7 days I should be feeling much better.  I forgot to ask if the rash should start healing.  Sure hope it doesn't get worse.

 

The food list he gave me is pretty much what I follow for gluten-free so not a big deal for me.  One food that I can't have is peanuts or peanut butter.  Odd, been eating that with celery and apples all this time.  He told me to replace it with almond butter.

 

I like this doctor.  He did not say I didn't have Celiac DH but does want to work with me and I really appreciate his concern.  

 

BTW, check out skin yeast . . . a rash is a rash, is a rash.   :blink:   Golly, they all look so much alike.  Thanks for all my DH buddies on here. . . I cannot stomp my foot and say, "This is DH" and want to be open minded about the possibilities of other disorders.  I believe I've found the doctor to help!

 

 

 

 

 


Dapsone ~ Members Taking Dapsone Please Respond.

02 June 2013 - 01:03 AM

I have questions that I believe only people using Dapsone can answer.  I am on 75 mg Dapsone daily.  I started Dapsone and a gluten free and low iodine diet on 10/20/2012.

 

  • Do you have new outbreaks while on Dapsone?
     
  • Do you feel small bumps under your skin that do not break open?
     
  • If you eat gluten, do you breakout?
     
  • Do you still have episodes of intense itching?
     
  • How long did it take for your open lesions to heal?

 

If you have or are taking Dapsone, please respond.  I know every person may have different results but I really have concerns and maybe some answers will help me.
 


Reputation ?

02 May 2013 - 05:59 AM

The 'reputation' on my profile is marked neutral, who decides this and who puts the post into this category?  I also noted it is marked (2) but I only see one post under that category.

 

I reread the post and don't view it as offensive.  How do I see the other post if there is indeed two posts that have been reported?

 

I would gladly delete the postings as I don't want to offend anyone on this site.  How do I delete a post, if that is the case?  Can anyone see the reputation category and the posts?  If the posts were deleted would it be removed from my profile?

 

Thanks   :) 


Histamine Levels & Dh ?

25 April 2013 - 06:21 PM

Anyone have information or point me to articles to answer my questions?  I had 2 more biopsies in February taken correctly by Dr. F, head of Dermatology at USF.   He didn't think I would have a positive for DH due no gluten and on Dapsone since Oct/2012.   The biopsy only showed inflammation peri lesion.  Since the rash responded to diet and Dapsone within 3 days, my medical dx is Celiac-DH which was agreed on by 3 of my doctors.

 

I decided in March that I would stop the Dapsone to see if just the gluten-free diet would control the rash as my skin was so much improved.  It took about 10 days and the healing lesions renewed with a vengeance.  My PCP and Rheumatologist told me. . . "Don't stop the Dapsone again!".    :wacko: 

 

My questions (finally)

 

1)  I do much better with taking Benydrl, so does this mean I have too much histamine or not enough?

 

2) Does anyone have dimpling of your skin?  I noticed this when applying lotion after the rash.  Never felt this before the rash became so horrible a year ago.  It feels like the tissue under my skin has separated.  This is all over my body.

 

3)  Has anyone tried a gluten-free, low sugar, non-dairy meal replacement drink?  My PCP gave me the OK to go liquid.  I am disciplined enough to follow a liquid diet.

 

4)  Is there a skin cleansing, either from inside or out that will help speed up the removal of anti-bodies?

 

5)  Dr. F has ordered a new ANA blood analysis before I can have light therapy.  Has anyone had light therapy for DH?  Did it help heal the purple and darkening of skin due to the DH?  

 

Thanks for any help.   :)