Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

DH while on Dapsone?


disgruntledceliac

Recommended Posts

disgruntledceliac Explorer

Hi folks,

I started having obvious celiac symptoms (stomach, brain fog, energy issues) and DH outbreaks a decade ago. Didn't get diagnosed until recently. Went gluten free a couple years ago, although there was probably some cross-contamination up until six months ago. Now I have my own fridge, cooking space, oven. I also eat a very clean diet -- no processed foods, just stuff that I can verify is gluten free. I also avoid soy and milk ... they seem to cause problems for me.

My specialist put me on Dapsone, and I've taken 100 mg/day for the past two months.

Despite all of this, I've broken out in DH again in the past week. On my face, where it usually appears. I know that it is not unusual for DH to continue popping up for a couple years after going gluten free, but is this usual for someone taking Dapsone? Is there anything I can do, besides perservering in my gluten free ways and biding my time until it goes away? As you all know, it is so disheartening, not to mention painful. (And not unlike others, it has taken a toll on my social life. I'm a borderline hermit these days!)

Longtime reader of the celiac.com forums. I appreciate hearing about all of your experiences.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

I need to ask you to clarify some things okay? When you were put on the Dapsone, did you start right out on 100mg day? When you went on the Dapsone, how long did it take before the rash resolved? Is this the first time since being on Dapsone that the rash has come back?

disgruntledceliac Explorer

Thanks for the reply. To answer your questions, yes, I've been on 100mg/day for the full two months. When I began taking Dapsone there wasn't much rash on my face (where it is now) -- it was mostly on my scalp -- and the little I had cleared up within a week or so. This is the first time that the rash has returned to my face since beginning Dapsone. (There's also some bumps on my scalp again.)

I didn't include this info in the original post, but it might be helpful for your information. A few weekends ago I ate some chips that were labelled gluten free, but after eating them I started feeling the telltale burning itch on my face that led to my current outbreak. I looked up info on the chips and while they claim to be gluten free, they may contain soy and definitely contain vegetable oil. (I avoid soy because of assorted problems.) Around the same time I tried re-introducing dairy to my diet, which I tried for a couple weeks. Between the iodine content and the casein this probably aggravated the situation. (I've since stopped consuming dairy.)

 

 

 

Metoo Enthusiast

Hello.  I wanted to tell you I seem to be having the same problem...although I am on a lower does between 25-50 mg depending how bad I am broke out.  

 

I first cleared on 50mg in 1 week.  Now though i seem to be breaking out while on Dapsone from too much salt or iodine.  I ate some gluten free summer sausage last week and now my chest is covered in DH.   

Its miserable!  So darn itchy!  I barely slept last night.  I am considering going back to my doctor because of this.  I just don’t know how normal this is, or if DH looses its effectiveness to some extent the longer you take it.  

 

 

squirmingitch Veteran

I would say to both of you to nix the iodine for 2 weeks. Look up low iodine diet on thyca.org. The other thing is - and you 're not going to like this - BUT

NOTHING labeled gluten free. Eat fresh fruits & veggies, & meat & dried beans you sort, wash & cook yourselves & later, the dairy can be added back in. NO EATING OUT!!!!! Nothing from a bag!!!!! You want a snack? Apple slices, carrots, banana, fruits or even some leftover meat.

If you continue to have problems after about 2 weeks of that, then you may need to have the Dapsone dose upped.

You guys need to know that dh is ultra sensitive to the tiniest amount of gluten. One reason I am not a fan of people taking Dapsone is because it does control the rash & people are lulled into a false sense of security. You may be eating stuff you are sensitive to but you don't know it b/c the Dapsone is masking the reaction. 

MOST of us with dh can't eat like celiacs who do not have dh; at least not in the beginning & maybe for years & years. Depends on the individual but enough of us have learned the hard way that we have to go to the maximum extreme to get relief.

plumbago Experienced

Hello,

I can tell you a couple of things, the first of which is based on personal experience. I sometimes have an unsightly rough patch on my nose that I have been struggling with for a number of years. If I bring up the topic at the dermatologist, they tend to put me on either an anti-fungal or a steroid cream, both of which after a while I stop using. The steroid of course does "work." My skin clears up. And now with the anti-fungal, this was more interesting. It seems that whatever it was on my nose did kind of clear up, but then a patch of...something (I don't know what) would crop up just outside of the area where I had put the anti-fungal cream. That made me laugh. Next, I assumed it might have been caused by not washing my hair enough (I have dandruff and used Head & Shoulders) so I'd experiment and it would (sort of) seem that my nose was not as bad on the day after I washed my hair. But the most dramatic improvement by far has occurred since I switched from Head & Shoulders to a bar shampoo (which I do in order to get organic ingredients but more important to cut down on plastic waste). Rough patch is simply gone with no trace of it. The older I get the more I am tending to use personal care products that try very hard to be organic.

Second, I read the adverse effects of dapsone, and see that exfoliative dermatitis is one of them, as is photosensitivity. Have you ruled out adverse effects?

Plumbago

disgruntledceliac Explorer
4 hours ago, squirmingitch said:

I would say to both of you to nix the iodine for 2 weeks. Look up low iodine diet on thyca.org. The other thing is - and you 're not going to like this - BUT

NOTHING labeled gluten free. Eat fresh fruits & veggies, & meat & dried beans you sort, wash & cook yourselves & later, the dairy can be added back in. NO EATING OUT!!!!! Nothing from a bag!!!!! You want a snack? Apple slices, carrots, banana, fruits or even some leftover meat.

If you continue to have problems after about 2 weeks of that, then you may need to have the Dapsone dose upped.

You guys need to know that dh is ultra sensitive to the tiniest amount of gluten. One reason I am not a fan of people taking Dapsone is because it does control the rash & people are lulled into a false sense of security. You may be eating stuff you are sensitive to but you don't know it b/c the Dapsone is masking the reaction. 

MOST of us with dh can't eat like celiacs who do not have dh; at least not in the beginning & maybe for years & years. Depends on the individual but enough of us have learned the hard way that we have to go to the maximum extreme to get relief.

Yeah, I think this is the answer here. I've essentially adopted a paleo diet to see if that works. Fingers crossed.

Thanks to all for your responses.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

I'm not sure you have to do paleo but that's up to you. I had to end up doing the Fasano gluten cross contamination elimination diet. AND I could not do the Boost shakes & stuff like that because of the carrageenan (iodine!). Also, for some reason, the Gatorade was a no go & rice was a no go BUT I did do instant coffee.:lol: A girl's gotta have something right?

I still am not eating traditional packaged gluten-free stuff. I've been able to add Smuckers natural PB & Barney Butter Almond flour.

disgruntledceliac Explorer

I wasn't aware of the Fasano diet prior to the thread. Thanks for the link. That's generally what I'm following at this point, so it is good to see that there's some science behind it.

Thanks all for your insights and comments. I appreciate it.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,930
    • Most Online (within 30 mins)
      7,748

    quinnmac
    Newest Member
    quinnmac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
×
×
  • Create New...