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razzle5150

DH no celiac

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I was diax with DH  and I dont haVE cELIAC. Dermatologist said anybody can get it. I was tested 3 times for Celiac and do not have it. Also had 2 dermatologist look at me and both agree DH . hAD A BIOSPY of my knee..  one was here in sioux city and the other at Mayo. Just to let people know. Roz  I am on Dapsone and its not doing a good job . up to 100 mg a day..

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1 hour ago, razzle5150 said:

I was diax with DH  and I dont haVE cELIAC. Dermatologist said anybody can get it. I was tested 3 times for Celiac and do not have it. Also had 2 dermatologist look at me and both agree DH . hAD A BIOSPY of my knee..  one was here in sioux city and the other at Mayo. Just to let people know. Roz  I am on Dapsone and its not doing a good job . up to 100 mg a day..

If you have DH you have celiac.

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1 hour ago, razzle5150 said:

I was diax with DH  and I dont haVE cELIAC. Dermatologist said anybody can get it. I was tested 3 times for Celiac and do not have it. Also had 2 dermatologist look at me and both agree DH . hAD A BIOSPY of my knee..  one was here in sioux city and the other at Mayo. Just to let people know. Roz  I am on Dapsone and its not doing a good job . up to 100 mg a day..

Are you gluten free razzle?

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On 3/4/2017 at 1:12 PM, GFinDC said:

If you have DH you have celiac.

What he said!  DH is the skin manifestation of Celiac Disease.  If you had a positive biopsy for DH, you have Celiac. If you do not follow a strict gluten-free diet, then the DH will not go away and will only get worse.  That is probably why the meds are not working well for you.  It also can take up to 2 years after going gluten-free for DH to completely clear up.

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On 3/4/2017 at 11:06 AM, razzle5150 said:

I was diax with DH  and I dont haVE cELIAC. Dermatologist said anybody can get it. I was tested 3 times for Celiac and do not have it. Also had 2 dermatologist look at me and both agree DH . hAD A BIOSPY of my knee..  one was here in sioux city and the other at Mayo. Just to let people know. Roz  I am on Dapsone and its not doing a good job . up to 100 mg a day..

Razzle5150,

You might be interested in this new research discussing this very topic if you (they/your doctor's) are sure it is DH.

(sad they  (the doctor's) don't know this) but DH is as Gemini said is the Skin Manifestation of Celiac disease.

That said read this new research as reported by Jefferson Adams.

https://www.celiac.com/articles/24689/1/Can-Rituximab-Treat-Recurrent-Dermatitis-Herpetiformis/Page1.html
 

It might help you to know there are new treatments that might work for DH when Dapsone does not.

Also read this thread about how Knitty Kitty used Niacin to treat the intense bone deep itching usually associated with a DH diagnosis.

She used Niacin which can cause intense flushing for the first 3 days of use.  This can deplete your histamine reserves disabling the itching trigger mechanism.

Taken with food (Niacin) in lower dosages (100mg to 250mg max to limit flushing) multiple times daily can help mitigate the flushing of Niacin until it goes away in a few days.

You might also try Slo-Niacin to see if helps if the Niacin flush is too much for you to handle.

I have not seen any research that says it helps with itching that you might be experiencing with your DH diagnosis but Slo-Niacin also known as inositol hexaniacinate (IHN) can help with some of the digestive issues you might be having like Ibs, GERD, or constipation  (more or less than once a day).

Many celiac's have poor gastric function i.e. hyphochlordia or low stomach acid and taking Niacin (especially if you are not taking a proton pump inhibitor) ie acid reducer aka PPI's like Prilose or Nexium

can help with this condition (low stomach acid) often.

See this research on the topic in the Townsend Letter.

http://www.townsendletter.com/FebMar_2003/inositol0203.htm

good luck on your journey and I hope this is helpful.

** this is not medical advise.  Taking Niacin can cause flushing so be aware of this fact before using the Niacin form to try and treat yourself if you are so inclined like Knitty Kitty was to use Niacin to treat her DH symptom's so as not to be surprised by this fact I have told you in advance.  Slo-Niacin should not do this hence it's name.

posterboy,

 

 

 

 

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I do hope you are gluten free or will go gluten free. If you have DH you have celiac. Dapsone is quite toxic so I hope your doctors are at least checking your liver function frequently since celiac can also impact the liver. I had DH for a long time along with neuro impact before gut symptoms became obvious. A lot of damage was done because of the delay in proper diagnosis and some of that has been permanent.

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Members have told you that DH is a manifestation of celiac disease.  If you had a skin biopsy by two clinics and they told you it was DH, then you have celiac disease which means that you have to follow a STRICT gluten free diet.  Why the negative blood tests?  Because a big chunk (can not recall the number) of DH suffers test negative.  I do not personally have DH, but if you want relief from the itchy rash and to get off a very toxic drug, you need to go gluten free (which you have), but it must be very strict.  Even the tiniest amounts of gluten that may not affect me, it going to hit you harder (from what I have read).  Stick to Whole Foods (even avoid certified gluten-free processed foods) for several months until you see improvement.  Do not eat out.

You can do it!  

Consider following Jane Anderson.  She has DH.

https://www.verywell.com/jane-anderson-celiac-disease-and-gluten-sensitivity-expert-562258

Learn more:

https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/

https://www.gluten.org/resources/getting-started/dermatitus-herpetiformis/

The last link will talk about why blood tests can be negative with those with DH.  

 

Edited by cyclinglady

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If you click on the green circle  right of the thread title you can follow your thread and get an email when someone replies.  Please do that.

There is a lot to learn about DH and celiac disease.  It's not like a cold or something silly that you get over in a week.  They are both lifelong chronic conditions.  So it's a real good idea to start reading up on these conditions so you are prepared to live well with them.

DH can be controlled, but it takes attention.  Members report avoiding iodine is helpful during the active phase  of the skin rash.  They also report that the skin rash is very sensitive to minor amounts of gluten and cross-contamination.  Various treatments like DAPSONE are sometimes used but should not be an ongoing medication for life.  The side affects are substantial.

It sounds like your doctors are not experts on DH.  If you can find a celiac support group in your are, they may be able to recommend a better doctor.  Not all doctors are good on celiac disease treatment and diagnosis.

https://www.celiac.com/gluten-free/search/?&q=iodine

 

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