Sulfa Allergy = No Dapsone?

[JenR]

Hi all - last time I posted here was over 2 years ago -

https://www.celiac.com/gluten-free/index.php?showtopic=53781&st=0&gopid=498699&#entry498699

Little has changed. The rash that used to come and go on my elbows and knees - always symmetrical although one side would start first - migrated to my outer ankles. Right is worse than left. I will also get a few spots of it on my knuckles (joint at the base of the finger) now and then. It all improves with topical steroids but returns with cessation of steroids. First derm in 2009 did a direct biopsy of rash which concluded no psoriasis - no DH comments either way at that time. He also did an anti-TTG blood test which came back "negative" (I never got a copy of the actual results.) I know that is insufficient to completely rule out DH/celiac disease.

Second derm, fall of 2010, pronounced this "neurodermatitis." Yeahright.

I decided I am just tired of it, and braced to launch a minimum 1 month gluten-free trial. I'm easing into it as best I can, needing to gather lots of info about ingredients to watch for on foods that are not labeled gluten-free, etc. It occurred to me - why not just try to get my internist to prescribe dapsone .... seems a positive reaction would be a decent diagnostic and could pressure for a new biopsy (done right this time.) I also noticed a description of DH somewhere that described the area of the rash turning a sort of purple color as it was healing. That's just what mine does. Further steels my resolve to get to the bottom of this.

As I read about dapsone I realized it's a sulfonamide, or related. I had a full-body reaction to a sulfa antibiotic in 1993 or '94 (red hot raised rash that slowly spread over my entire body, started several days after I started the abx.) At that time I was told by the ER doc that I had a sulfa allergy & should never take it again; the next reaction could be life threatening. I've never questioned it, always list it as a drug allergy just in case - never needed to wonder/worry.

But now I'm wondering. With this history, does it mean I should not even try to take dapsone? My doc knows about my purported allergy, of course, so I couldn't hide it even if I somehow had the thought that that would be a good idea.

I'm committed to give gluten-free a good try but am overwhelmed at it, and afraid I will accidentally or unthinkingly ingest gluten and be back at square one each time I do so. I know there is lots of online support for the gluten-free diet but at the same time it is a very lonely feeling as I'm sure many of you know

Thanks for any advice/ideas on the sulfa/dapsone thing.

[itchy]

Gosh, it sounds like taking Dapsone would be a very serious decision indeed. Dapsone already has significant risks without adding in probable sulpha allergy.

Going gluten free doesn't have to be really onerous, especially if you are able to be flexible and don't have a lot of social pressures to eat food that others prepare. In my opinion the best way is simply to eat only foods that can't have gluten, like meat, fresh vegetables, whole grains without gluten, like quinoa, rice. Avoid manufactured foods, including sauces, that aren't clearly labelled 'gluten free' from a source you trust.

I think its much harder for some than for others. If you are willing to stick to a fairly tedious diet for a couple of weeks, that might be enough to show results. Then gradually include more foods as you learn what you can eat.

Even making the occasional mistake it may be that you get enough relief to convince you.

[JenR]

itchy, thanks for the encouragement on the diet. Our lifestyle is not such that we eat out a lot - and as the female head-of-household I prepare most of the food my partner and kids eat My partner does cook sometimes but he is supportive of me needing to do this and will do his best to comply with my "rules." I live in a big enough city that there are even several restaurants that have gluten-free menu items that can be trusted, if we do want to go out.

I belong to a co-op farm and will start getting veggie shares in about a month. I paid for a share that is double last year's amount so I will have a lot of veggies to deal with! I'm an old hat at homemade salad dressings and we love simply prepared grilled veggies. For meals I am fine, it's snacks I need to figure out - gotta really read up on the gluten-free baking because those store bought gluten-free breads, cookies, etc. are spendy!!

[ravenwoodglass]

Dapsone is a very toxic drug. You are much better off going gluten free and also avoiding it in topicals. The diet is tough at first for many but it is doable. If you have DH you may also have other organ impact that you are not yet aware of.

[JenR]

You are much better off going gluten free and also avoiding it in topicals.

Thanks for the input - but it's really a matter of opinion and preferences. I'm aware of dapsone's general safety profile. Just trying to figure out if my prior sulfa reaction is a total rule-out for even trying it. Long term, if a dapsone trial improved my rash and confirmed DH/celiac disease, I would definitely go to a gluten-free approach and not stay on dapsone. My idea was to use it as a diagnostic aid, not a long term treatment - I know it may help the rash but doesn't address the root cause of gluten intolerance and its subsequent damage.

[eatmeat4good]

I was never sure if I was allergic to Sulpha or not but I always got really nauseous. Being desperate for relief from DH I tried Dapsone in Jan this year for two weeks. I suddenly broke out in hot red pinpoint dots all over my whole body. I immediately stopped the drug and took benedryl then a short course of Prednisone. I then got really serious about limiting iodine in addition to gluten because Iodine can keep your antibodies active. I got rid of iodized salt, eggs, canned goods, dairy, asparagus and carageenan, fish, shellfish, tuna etc.since they all have some degree of iodine. THAT is when my sores started healing. I already had been gluten free for about 5 months, but sores weren't healing. Now I am fine after 3 months of strict iodine avoidance. I can have iodine now. But not shellfish. AND if I get the slightest bit of cross contamination I have a DH reaction for several weeks.

[itchy]

JenR, it sounds like you won't have much problem with a gluten free diet. As you've probably guessed, the biggest problem may be well meaning friends and hosts, who will offer you a range of delectible goodies that they claim are gluten free and which are hard to turn down for social reasons. Often they aren't gluten free, unfortunately.

To be honest I don't trust most restaurants labelling gluten free. For me even a moderate risk isn't worth the months of regression. Rather than eating the labelled gluten free entrees, I try to eat dressing-free salads or other things that are unlikely to have gluten. Even then my partner ends up eating parts of my meals.

Generally I try to eat before I go out for a meal. That way I'm not hungry and won't be tempted to take risks. For me most of the fun of eating out is the social part anyway.

Good luck!

[JenR]

eatmeat, I have seen the references to iodine but haven't yet figured out how it fits in with celiac/DH. I will have to look into that. Is it possible that for some, the iodine is more the problem than the gluten? So long as I can keep my 3 food groups (butter, chocolate, red wine) I am sure I will be fine!

itchy, yeah, I can see the social situations being the most problematic. I guess I'll just deal with it as it comes at me.... the few local restaurants I know of that have some gluten-free options, are independently owned/operated by committed folks who really dig food and care about their customers. like, they come out and sit at the table and have a beer with you, and give you freebies when you rave about their food So, I would totally be OK with asking those guys hey, seriously, is this REALLY gluten-free? How do you prepare it? And they would not be offended. unfortunately they're not right around the corner, so it won't come up unless I make an effort

[rosetapper23]

The advice about iodine is right on! When I was 34, I figured out that the DH was caused by iodine--I didn't yet know about the gluten connection. By eliminating iodine in my diet, the DH was kept completely under control. Thirteen years later when I was disgnosed with celiac disease, I still didn't make the connection, but when I read the book, "Celiac Disease: The Hidden Epidemic," I read that the rash was caused by both gluten and iodine. I then realized that the horrible rash that I had controlled by eliminating iodine was actually DH. After my thyroid failed five years ago and I had to start taking meds that contain iodine, I found out that even the smallest glutening caused the DH to rear its ugly head. Even without gluten, I have a chronic rash across my back from the meds. My advice is to cut out ALL iodine, and it can be found in iodized salt (so don't eat any potato chips or french fries either), dairy products (except organic), fish, and asparagus.

[JenR]

ok, now this is getting really overwhelming feeling again! I am on my 3rd day of what I believe to be gluten free.... so far so good. eliminating iodine though, ugh. Also I'm on Synthroid for Hasimoto's hypothyroidism (about 9 years now) - no good options to that!

FWIW, I did the iodine patch test with the strongest iodine solution I could find (still pretty weak) .... didn't seem to provoke a response. I did it a few times. It did get itchy once, but - ??

At this point I'm leaning towards a return to the derm with a polite request that he do a DH type biopsy protocol. I know the blood tests can show false negatives but will a properly done (and viewed/interpreted) biopsy give a false negative?

[eatmeat4good]

There is a high rate of false negatives with the skin biopsy according to Dr. Peter Green in Celiac, a Hidden Epidemic. Also if you are eating gluten free, you are likely to test negative. My sores only healed AFTER I gave up all iodine in addition to gluten for 3 full months. I don't know what to say about Hashimoto's, I just tested with elevated antibodies to that. Probably have had it for years, but didn't know it, I was too sick with Celiac. I'm scared to death to take iodine in medication. Seems like cruel and unusual punishment to have Hashimoto's AND Celiac DH at the same time. How do you have one condition where you MUST take Iodine and another where you must not?

[ravenwoodglass]

There is a high rate of false negatives with the skin biopsy according to Dr. Peter Green in Celiac, a Hidden Epidemic. Also if you are eating gluten free, you are likely to test negative. My sores only healed AFTER I gave up all iodine in addition to gluten for 3 full months. I don't know what to say about Hashimoto's, I just tested with elevated antibodies to that. Probably have had it for years, but didn't know it, I was too sick with Celiac. I'm scared to death to take iodine in medication. Seems like cruel and unusual punishment to have Hashimoto's AND Celiac DH at the same time. How do you have one condition where you MUST take Iodine and another where you must not?

After we have been gluten-free for long enough for the antibodies to leave the skin we can and should then add back iodine. If you have been without a DH outbreak for awhile you could try the med and hopefully you won't have an issue.

[JenR]

There is a high rate of false negatives with the skin biopsy according to Dr. Peter Green in Celiac, a Hidden Epidemic. Also if you are eating gluten free, you are likely to test negative.

Oh, I was planning to go back to a gluten-centric diet about a month before my appointment - I figured if that is really the cause of my rash, it should flare quite nicely

I had not read of false negatives with the skin biopsies! I wonder if that is due to taking improper samples, and/or human error in the lab? I'll look up that book!

[JenR]

After we have been gluten-free for long enough for the antibodies to leave the skin we can and should then add back iodine. If you have been without a DH outbreak for awhile you could try the med and hopefully you won't have an issue.

I don't understand why the iodine in Synthroid is a problem.... synthetic T4 (levothyroxine) is identical to that produced in the human thyroid gland. It's not free iodine - the iodine is an integral part of the levothyroxine molecule. Picture and complete prescribing info are here - Open Original Shared Link

[itchy]

I had not read of false negatives with the skin biopsies! I wonder if that is due to taking improper samples, and/or human error in the lab? I'll look up that book!