Dapsone Or gluten-free?

[J in Cincy]

I am looking for some advice regarding dapsone use. I have farely minor GI symptoms treatable with prilosec and no villous atrophy. The DH is tolerable with 50mg/day dapsone but I probably need more to completely eliminate symptoms. Both the GI doctor and dermatologist do NOT recommend a gluten-free diet - presumably because it will be too much trouble - and I tend to agree - there is a lot of time spent planning and cooking and worrying. Not too mention gluten-free bread and gluten-free beer aren't quite as good as their non-gluten-free counter parts. However, I want to better understand dapsone side effects? It isn't very clear from what I have read - most of it negative towards dapsone whereas my doctors say it is very safe. Are there stories out there, good or bad regarding long term dapsone use at 50 - 100 mg/day? Just trying to make a tough decision... thanks in advance for helping to decide!

[ravenwoodglass]

While taking dapsone will alleviate the symptoms of DH it does nothing to stop the autoimmune process. Do you have any other health issues at all? Arthritis, chronic fatigue, fibro, depression and/or anxiety, thyroid, gall bladder, any issues with anemia, inflammation, trouble with periods or concieving, balance issues, diabetes or prediabetes- to name just a few? If you do they could very well be related to gluten. The choice whether to treat the symptoms or the cause is up to you but personally I would choose getting rid of the cause of the issue and avoiding other celiac related issues from forming rather than treating the symptom and doing nothing else until you are hit with other more serious gluten related disorders.

[happygirl]

I would seek a second opinion, as their opinion differs greatly from the medical literature and Celiac specialists.

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[Mike M]

I am looking for some advice regarding dapsone use. I have farely minor GI symptoms treatable with prilosec and no villous atrophy. The DH is tolerable with 50mg/day dapsone but I probably need more to completely eliminate symptoms. Both the GI doctor and dermatologist do NOT recommend a gluten-free diet - presumably because it will be too much trouble - and I tend to agree - there is a lot of time spent planning and cooking and worrying. Not too mention gluten-free bread and gluten-free beer aren't quite as good as their non-gluten-free counter parts. However, I want to better understand dapsone side effects? It isn't very clear from what I have read - most of it negative towards dapsone whereas my doctors say it is very safe. Are there stories out there, good or bad regarding long term dapsone use at 50 - 100 mg/day? Just trying to make a tough decision... thanks in advance for helping to decide!

Strongly agree with other posters. Please get a second opinion. You can do the gluten free. It's not easy, no sense in sugar coating it. But you can do it. You very likely will become even more sensitive as time goes on. Staying on gluten will continue to overload your immune system, making it even harder to get back to "normal' health in my opinion. All the best, Mike

[Guest mquistor]

I made the same choice 12 years ago to use Dapsone to manage my DH symptoms. What I now know is that Dapsone use can cause very serious issues which I didnt know about when I decided to use the drug. For me the first side effect was low energy which was caused by my body dealing with the inflammatory affects of the immune respnse to gluten (Dapsone eliminates the rash but not the immune respose). Secondly, gluten over time inflammed and damaged my gut to the point of being diagnosed with "Leaky Gut Syndrom". Again Dapsone covered up many of these symptoms until will was a big problem. My dosage of Dapsone was low < 25mg/day and I was under the supervision of a Dematologist and Physician who claimed to know about this condition. Dapsone is good at covering up the symptoms of your body telling you to stop injesting Gluten. Listen to your body. This is the friendly version of this story, Dapsone and the issues it caused and or covered up almost killed me! In my opinion Dapsone should only be used for the absolute minimum time necessary to transition to a completely gluten-free diet. However, it's hard to tell if your 100% gluten free if your taking Dapsone so even then its probably not a good idea.

[Fiddle-Faddle]

I wouldn't even consider masking symptoms with a medication (whose long-term side effects have not been studied amongst the general population) while still consuming the substance that directly CAUSES the illness.

That would be like being allergic to peanuts, but continuing to eat them while taking medication to block out the sensation that one's throat is closing due to the anaphylactic reaction, but not blocking the actual reaction.

If you have DH, then your immune system is attacking YOU. Dapsone doesn't stop the attack. For all we know, it might redirect it to something other than your skin--and I would be very surprised if you didn't already have other autoimmune issues going on.

I don't think the gluten-free diet is all that much trouble. Yeah, I cried for 2 days when first diagnosed--but then I started researching recipes, and it's not that bad. Come to think about it, it isn't bad, period. In fact, we're eating better than we did before we'd ever heard of gluten.

There are geniuses out there who have figured out how to make gluten-free versions of EVERYTHING, and their recipes are easily available (many on this site), and easy to make (and even easier to eat! )

I make gluten-free bread twice a week, I make gluten-free pizzas using corn tortillas, or occasionally from scratch, I use rice pasta, and make gluten-free cookies, pancakes and cakes for my kids. Oh--and I work full-time, too.

What's the big deal?

My kids, by the way, are not officially diagnosed, but were so relieved when their rashes and stomach aches went away on the gluten-free diet, that they don't cheat. I hear over and over from their teachers and from the parents of their friends, that my kids turn down cookies, and things where they can't read the label, saying they can't eat gluten.

They know that I can make them a gluten-free version of anything they feel they are missing. They usually help with the baking, measuring gluten-free flours, etc. My 10-year-old likes to invent recipes.

If my 7-year-old can deal with a gluten-free diet and doesn't feel that it's too difficult, I think you can, too.

Pardon me for being critical, but I think your doctors are idiots if they think the diet is too difficult. If I can do it, anyone can do it.

[Fiddle-Faddle]

Just thought of another analogy--it's like a diabetic continuing to eat sugar, but taking meds so he doesn't FEEL the effects of dangerously low/high blood sugar.

Of course, the choice is ultimately up to you.

[lovegrov]

NIH says, and celiac experts agree, that if you have DH, you have or will have celiac. I controlled my DH for 20 years with dapsone (I had never heard of celiac), but used 25 mg or less. Still, I ended up in the hospital with SEVERE celiac problems. Don't play around with it. Go gluten-free.

richard

[MollyBeth]

No one on this forum is going to tell you that it's okay to treat Celiac Disease with anything other than a gluten free diet. Adjusting to the gluten free lifestyle can be hard but you just gotta suck it up and do it. Your health depends on it. I hope you reconsider and go on the diet. Best of luck to you!!

[J in Cincy]

Thanks for all the advice - over whelmingly to go gluten-free. I have been eating gluten-free for the last few weeks except for possibly smoke flavor and carmel color . . . and I'm slowly figuring out products based on the websites. My rash is better (still with 25mg dapsone) but I don't notice anything terribly different as far GI symptoms but I assume it takes time...

I'm also seeing a new doc in a few weeks to see what he says.

Thanks again

[lovegrov]

The smoke flavor and caramel color shouldn't be a problem. Please commit to gluten-free. As I said, I had DH with no idea about celiac disease and I ended up so sick I missed 10 weeks of work.

GO gluten-free.

richard

[ravenwoodglass]

Thanks for all the advice - over whelmingly to go gluten-free. I have been eating gluten-free for the last few weeks except for possibly smoke flavor and carmel color . . . and I'm slowly figuring out products based on the websites. My rash is better (still with 25mg dapsone) but I don't notice anything terribly different as far GI symptoms but I assume it takes time...

I'm also seeing a new doc in a few weeks to see what he says.

Thanks again

It will speed up your healing and the exit of the antibodies under the skin if you can go with a pure of a diet as you can. Try to eat as little processed food as possible, the one sure way to avoid CC. Also be aware that many items that are supposed to be gluten free are heavily CC'd. A prime example of this is Lay's products. They have a list of gluten-free foods a couple pages long, my family was so happy to see that but our happiness was shortlived when we got glutened over and over again by products on the list. If you can go with unprocessed foods and stay out of restaurants for a bit it will make the healing process go a bit quicker. Also many of us need to eliminate dairy products at first, the villi that make the enzyme to digest dairy are the same ones damaged by the celiac reaction. Many can add it back in after they heal.