First Time Poster - Dh Attack

[AlMac]

Hi,

 I'm a first time poster from the UK. I thought i'd sign up and discuss DH problems with you guys rather than my family who don't suffer from DH and i can't relate to them when i talk about this problem.

 

I'm 31 years old and i was diganosed with DH when i was 17. I first had symtoms when i was 14 and it took the doctors 4 years to finally diagnose me with DH. That was a horrible 4 years of my life suffering almost every night with the blisters, itch, burn.

 

I was put on dapsone which cleared my skin almost instanly and i've been on dapsone since. I've had a few attacks in the past while on the Dapsone. Especially eating alot of seafood and read that having a lot of iodine can trigger an attack?

 

During the last few years my diet has been a bit relaxed, not worrying about gluten free and relying on the tablet.

 

Recently i've been suffering from a bad attack (it's lasted the last 4 weeks which is the longest i've suffered since i was 17) I'm panicking a bit and wonder if its possible i've build a tolerance to dapsone? I've been to the doctor who has reffered me to a specialist.

 

I'm now completely gluten free - strict! (for the last 4 weeks) and will do so for the rest of my life. I'm still suffering a little with my skin though which is getting me down. I'm wondering should i cut out iodine from my diet? During the last few weeks i've had a lot of eggs and potoatos and wondering if thats triggered an attack? I've now cut them out my diet as well as milk.

 

I descovered there was wheat proetin in my shampoo so changed that and i've read that flouride in toothpaste can trigger an attack?

 

In the future i'd love to come off Dapsone and be completely gluten free - medication free.

 

Thanks for reading and would love to hear your replies.

 

[squirmingitch]

That's the problem with Dapsone. You take the pill, you have no rash, therefore you don't have a clue when you're getting a little cross contamination but the antibodies are still getting deposited under your skin. Obviously this is what has been happening with you as you say you've had a few attacks while on the Dapsone. Your Dapsone dosage wasn't enough to override the gluten you were getting. I would think the iodine should not make a difference while you're on Dapsone. BTW, while I'm thinking about it, potatoes are fine -- it's the skins that contain the iodine so peel them deeply & you can eat potatoes.

And while you were relying on the Dapsone to take care of the rash; the villi in your small intestine were being damaged as well as all the other nasty things celiac does to us. You've been risking cancer, neurological damage, upping the risk of other auto-immune disorders, thyroid disease & a host of other problems. At the very least, your doc should run a thyroid panel & check your vitamin levels and your iron.

I have never read a medical text that says Dapsone should be taken for more than 2 years for dh. It's only supposed to help you during the time the antibodies are getting out of your skin. it's not supposed to be a lifelong drug for dh control. Has your doc been running tests to make sure the Dapsone is not doing other bad things to you? You really are supposed to be carefully monitored while taking Dapsone.

 

I have never read that you can build a tolerance to Dapsone. I think what's happening (I'd bet cash money on it) is exactly what I stated in my first paragraph. You may have never been totally gluten free but instead getting cc'd all along.

 

As to the fluoride triggering an attack --- nope, never heard of that & I think someone doesn't know what they are talking about if they are saying this. If you read that in a medical text or some bonafied study then I would greatly appreciate a link to that.

 

As much as I hate to say it, at this point, you might need to have your Dapsone dosage upped to control the rash. Or you can go cold turkey & ditch the Dapsone right now & suffer the consequences. I'm really sorry you're going through this & I'm really sorry I have to say this but you know you have done this to yourself. It may take years for the antibodies to get out of your skin & until then, the rash can wax & wane even if you're being strict gluten free. 

 

You should read the Newbie 101 & make sure you have all the rules down & aren't getting cross contaminated. Here's a link:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

You need to be brutally honest with your doctor & let him/her now that you've been cheating on the diet & have likely been getting small amounts of gluten all along for the past 14 years that you've been on Dapsone.

 

You can try going low iodine for 2 weeks & see if it helps you. Here's a link to the low iodine diet ( you of course wouldn't eat the gluten parts of it). It won't hurt you to go low iodine for 2 weeks.

Open Original Shared Link

 

If you have children, you know you should keep an eye out for celiac disease in them.

[AlMac]

That's the problem with Dapsone. You take the pill, you have no rash, therefore you don't have a clue when you're getting a little cross contamination but the antibodies are still getting deposited under your skin. Obviously this is what has been happening with you as you say you've had a few attacks while on the Dapsone. Your Dapsone dosage wasn't enough to override the gluten you were getting. I would think the iodine should not make a difference while you're on Dapsone. BTW, while I'm thinking about it, potatoes are fine -- it's the skins that contain the iodine so peel them deeply & you can eat potatoes.

And while you were relying on the Dapsone to take care of the rash; the villi in your small intestine were being damaged as well as all the other nasty things celiac does to us. You've been risking cancer, neurological damage, upping the risk of other auto-immune disorders, thyroid disease & a host of other problems. At the very least, your doc should run a thyroid panel & check your vitamin levels and your iron.

I have never read a medical text that says Dapsone should be taken for more than 2 years for dh. It's only supposed to help you during the time the antibodies are getting out of your skin. it's not supposed to be a lifelong drug for dh control. Has your doc been running tests to make sure the Dapsone is not doing other bad things to you? You really are supposed to be carefully monitored while taking Dapsone.

 

I have never read that you can build a tolerance to Dapsone. I think what's happening (I'd bet cash money on it) is exactly what I stated in my first paragraph. You may have never been totally gluten free but instead getting cc'd all along.

 

As to the fluoride triggering an attack --- nope, never heard of that & I think someone doesn't know what they are talking about if they are saying this. If you read that in a medical text or some bonafied study then I would greatly appreciate a link to that.

 

As much as I hate to say it, at this point, you might need to have your Dapsone dosage upped to control the rash. Or you can go cold turkey & ditch the Dapsone right now & suffer the consequences. I'm really sorry you're going through this & I'm really sorry I have to say this but you know you have done this to yourself. It may take years for the antibodies to get out of your skin & until then, the rash can wax & wane even if you're being strict gluten free. 

 

You should read the Newbie 101 & make sure you have all the rules down & aren't getting cross contaminated. Here's a link:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

You need to be brutally honest with your doctor & let him/her now that you've been cheating on the diet & have likely been getting small amounts of gluten all along for the past 14 years that you've been on Dapsone.

 

You can try going low iodine for 2 weeks & see if it helps you. Here's a link to the low iodine diet ( you of course wouldn't eat the gluten parts of it). It won't hurt you to go low iodine for 2 weeks.

Open Original Shared Link

 

If you have children, you know you should keep an eye out for celiac disease in them.

 

 Hi,

 

Thanks i really appreciate you taking the time to reply!

 

Yeah when you put it like that i really have brought it on myself and have been pretty cavalier with this condition. I once said to the Dr about coming off dapsone however their reply was "You don't want to go back to the time you suffered really bad 14-17 years old)

 

I've been getting regular blood tests (once a month) on dapsone to check white blood count, liver count etc and not had any bad results. Once my liver count was up however it went back to normal the following month. I've been taking 50mg once a day.

 

Recently i've been on a low iodine diet (as well as strict gluten free) and my skin feels better. Still get the odd itch attack but nothing like a full on attack. For the past few weeks i've been gluten free but having alot of jacket potatos (with the skin). I'm putting that down to the bad reaction. I'm hoping to reduce my dapsone to once every two days and see how i react.

 

I'm going to see a specialist and i'll be totally honest with him/her about my past. I'll definetly be trying to be strict gluten free from now on. When you list the problems you can have then it puts it in perspective. I only thought intestine problems were for people suffering from celiac disease and i never had any symptoms for stomach problems.

 

The Fluoride Tooth Paste problem i read here - Open Original Shared Link

 

 

Thanks once again!

[IrishHeart]

 I only thought intestine problems were for people suffering from celiac disease and i never had any symptoms for stomach problems.

 

But you have celiac disease, hon. Didn't your doctor tell you that?  If not, that's a shame because

that is what you have. You should have gone G F immediately.

 

And your doctor should be checking the antibodies. This is a huge mistake.

 

DH is the skin form of celiac and you should be 100% gluten free so you can avoid the blisters, the other autoimmune diseases that can accompany celiac and be rid of medications for good.

 

You wouldn't really need the dapsone if you'd follow the G F diet as you should .  I doubt it's the other foods you are eating (like potatoes) but your continuous ingestion of gluten all these years. It may take some time for those antibodies to die down, but they will and your skin will clear.

 

No more gluten for you! Hang in there. Get well and best wishes.

[squirmingitch]

Geez, I'm really sorry your doc didn't truly understand about the Dapsone; that it's not meant to be a lifelong treatment. Generally, people are put on Dapsone only until they are strict gluten-free long enough for the rash to ramp down so it doesn't make you NUTS. By that time, you've got all the gluten-free rules down pat & can be taken off Dapsone & go it alone by following a strict gluten-free diet. At least he has been doing blood work to make sure the Dapsone is not doing you harm. 

 

Thank you for that link re: the fluoride. From looking at it, it seems that is just one doctors report of this happening in one patient. I can assure you that fluoride is not a problem. There have been hundreds, maybe thousands of people on here with dh who use fluoride toothpaste & it does not make the rash flare. I surmise what happened in that one instance the doc reports is that there was something else in the toothpaste & it was not the fluoride at all. Some toothpastes contain carageenan (sea kelp or seaweed) which is used as a thickening or gelling agent & is very high iodine. Carageenan will get many of us with dh when nothing else will so beware of it on labels. And it is in many things so check all labels for it.

Open Original Shared Link

I suspect this doctor did not know about the iodine connection. Note he states hens eggs but doesn't talk about the yolk which is where the iodine is. He doesn't mention any connection to iodine in either case. He just attributes it to hens eggs & fluoride. 

 

Most of us with dh have little to no GI symptoms or the symptoms are far milder than they are in celiacs who do not have dh. This is why you didn't have any GI symptoms. It's pretty amazing that you ever got dx'd in the first place when you consider you had no GI symptoms & only had the rash & it was 14 years ago when celiac disease was even less well known. Even today, getting a dx for the rash is a royal pain in the bum as so few dermatologists even know it exists or how to recognize it & top that off with very few knowing how to do a dh biopsy correctly!!!! It boggles the mind that you got lucky enough to get dx'd in the first place, much less in 4 years of searching for an answer. Today, just for the GI symptoms of celiac disease, the average time to diagnosis once one begins going to doctors & avidly searching an answer is 8 years!

 

I don't know the labeling laws in the UK so you are going to have to research that so you can be safe & know what you can eat & what you can't. You might find some help in this forum:

https://www.celiac.com/forums/forum/38-gluten-free-international-room-outside-usa/

 

This thread might help you find some relief when the rash flares:

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/

 

And go ahead & eat your jacket potatoes. Just don't eat the skin. Scoop the insides out. When I was low iodine, I found this method to work great (we call them baked potatoes in the US). Peel the potato & then coat the entire potato in oil & bake them just as you would if they had the skin on them. I did not wrap them in tin foil but just set them on a foil lined pan to bake. The outsides got hard & crispy.

[AlMac]

Hi guys,

 Thanks so much for all this! I've learned more here than i do from my my local doctor! I definetly have to be more careful with gluten and get it out my system and the plan is to come of the dapsone and be medication free.

 

With me being dignosed, they first told me i had scabies then they said i had impetigo, then they said i could have an allergy to something and did the grid on my back and taped various foods to it (nothing came up).

I was admitted to hospital a twice. The 1st time they did a skin biopsy but never did the DH test on it? 2nd time they did and found it was DH.

 

I have an appointment with a dermatologist soon and he/she will know a lot more than my normal doctor. I'll tell him everything and also get his advice about coming off the dapsone.

 

Many thanks once again!

[bartfull]

Go to the coping section here and read the Newbie 101 page. It will help you learn about cross-contamination so you will truly be 100% gluten-free.

 

 

Taping food to your back to check for allergies? Now that is the strangest thing I have heard yet!  You DEFINITELY need a new doctor!

[squirmingitch]

I just hope the dermatologist (derm for short) knows their stuff. I'm sorry to tell you that far, far, too many don't. It's like when you were trying to find out what the rash was way back when. Your story is like so many others.... scabies, impetigo, allergies, eczema, psoriasis & on & on & on. It's like a broken record. 

 

Yeh, I agree with Barty there ~~~ taping food to your back????? Ooooo kaaaaayyyyyy.  

 

I applaud your wanting to get off the Dapsone but since you aren't having any problems with it at present, you may want to stay on it until you get a little ways down the road with true gluten free living. I'm afraid if you go off it now, you will have the mother of all outbreaks, way worse than you had @ 14 - 17. Those antibodies have been getting stockpiled under your skin all these years. 

 

And whatever happens DO NOT let the derm give you any shots of steroids OR take any in pill form!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I can not stress this enough!!!!!!!!!!!!!!!! Steroids work on dh BUT they have a really nasty backlash the moment you go off them. Imagine all hell breaking loose. Ask me how I know.      I'm just trying to save you a whole lot of pain & itching & grief. 

 

If you have any questions, we're here. The best thing you can do right now is to read on this dh forum as many threads as you can. Also read on the other forums & you will pick up a lot of information & tips that will help you. 

[AlMac]

Hi Guys,

 Thanks a lot for that. I tried cutting my dapsone pill in half and having that instead of a whole one but had a pretty bad night last night. Was really burning bad. Ended up sitting in a cool bath at 4am. You called it right with the mother of all outbreaks!

 

Got the appointment with the dermatologist on Monday morning. So looking forward to that. Thanks for the warning on the steroids...no way will i accept that!.

 

I've been eating pretty clean at the moment which is obviously a good thing. Salads, vegetables, rice and chicken. Lost a wee bit of weight without being at the gym. May get a six pack out of all this suffering (got to take a positive from a negative)

 

Anyway, got to travel to London tomorrow with my work (i live in Scotland) Have to share a hotel room with a work colleague. Dreading it!!   

[AlMac]

I just hope the dermatologist (derm for short) knows their stuff. I'm sorry to tell you that far, far, too many don't. It's like when you were trying to find out what the rash was way back when. Your story is like so many others.... scabies, impetigo, allergies, eczema, psoriasis & on & on & on. It's like a broken record. 

 

Yeh, I agree with Barty there ~~~ taping food to your back????? Ooooo kaaaaayyyyyy.  

 

I applaud your wanting to get off the Dapsone but since you aren't having any problems with it at present, you may want to stay on it until you get a little ways down the road with true gluten free living. I'm afraid if you go off it now, you will have the mother of all outbreaks, way worse than you had @ 14 - 17. Those antibodies have been getting stockpiled under your skin all these years. 

 

And whatever happens DO NOT let the derm give you any shots of steroids OR take any in pill form!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I can not stress this enough!!!!!!!!!!!!!!!! Steroids work on dh BUT they have a really nasty backlash the moment you go off them. Imagine all hell breaking loose. Ask me how I know.      I'm just trying to save you a whole lot of pain & itching & grief. 

 

If you have any questions, we're here. The best thing you can do right now is to read on this dh forum as many threads as you can. Also read on the other forums & you will pick up a lot of information & tips that will help you. 

 

 

Another thing i wanted to ask..are you guys really careful with your products like shampoo, shaving foam, deodorant, after shave etc? 

[squirmingitch]

Yes, we do. The official medical stance is that the gluten molecule is too large to pass through skin. Well, we have lesions where the skin has been either scratched off or blisters that have broken & left a raw spot where there is no skin. Furthermore, quite a number of us have experienced reactions from topical gluten -- whether we just have a sensitivity to topical gluten or allergy type reaction -- I don't know, but we seem to be sensitive in that arena. When I was using gluten containing topical products ie: makeup & moisturizers, my face would itch like crazy & my skin would become puffy. I couldn't wait to wash it off!!!!! Even then, the itchiness & puffiness would linger for a couple days. When I switched to gluten-free makeup --- all that went away. Be cognizant especially of shampoo as it can get in your mouth when you wash your hair. You might have to call the manufacturers for info. on items. 

Remember to check any meds too. Both over the counter & prescription. Vitamins too.

 

You must have already found these links but thought I would post them anyway. It looks like the UK is getting tougher labeling laws as far as food is concerned. 

Open Original Shared Link

Open Original Shared Link

 

Open Original Shared Link :

• If you are diagnosed with Open Original Shared Link by a doctor, you can receive Open Original Shared Link staple foods via prescription from your Open Original Shared Link
• The National Prescribing Guidelines make recommendations on the amounts of gluten-free staple foods you can expect to receive on prescription each month.

[squirmingitch]

Eating out:

Open Original Shared Link

 

Personally, I do not recommend eating out; there are too many chances for cross contamination. It's like playing Russian Roulette unless you can find restaurants that are wholly gluten free. It sounds like you have to travel for your job which can make things sticky. Check about laws covering that. We have the "American's With Disabilities Act" which gives us certain protections in this arena. And honestly, I'm not up on every aspect of what it covers but you may find that you can be provided a room with cooking facilities so you can cook for yourself while on business trips. If not, then you will have to go to a market & pick up some prepared meats & make lettuce wraps or salads & such. Seriously, dh is severely sensitive to the smallest intake of gluten & I don't think I have to tell you what that means.

 

I suspected you would have problems trying to lower the Dapsone dosage at this point in time. I'm afraid you'll likely be on it for another 2 years. I wish this weren't the case but at least you're on the right road now & can look forward to the day you can loose the Dapsone completely. 

[AlMac]

Eating out:

Open Original Shared Link

 

Personally, I do not recommend eating out; there are too many chances for cross contamination. It's like playing Russian Roulette unless you can find restaurants that are wholly gluten free. It sounds like you have to travel for your job which can make things sticky. Check about laws covering that. We have the "American's With Disabilities Act" which gives us certain protections in this arena. And honestly, I'm not up on every aspect of what it covers but you may find that you can be provided a room with cooking facilities so you can cook for yourself while on business trips. If not, then you will have to go to a market & pick up some prepared meats & make lettuce wraps or salads & such. Seriously, dh is severely sensitive to the smallest intake of gluten & I don't think I have to tell you what that means.

 

I suspected you would have problems trying to lower the Dapsone dosage at this point in time. I'm afraid you'll likely be on it for another 2 years. I wish this weren't the case but at least you're on the right road now & can look forward to the day you can loose the Dapsone completely. 

 

Wow, it's just beginning to dawn on my how hard this will be. A minefield out there!

 

My plan is to stick to salads when I'm on the road. Think Subway salad boxs will be my best friend now. If it doubt, i'll not have anything at all. I'm actually associated with America in my line of work and traveled a few times to the states. Menus over your way are a lot better than here but its getting better.

 

Thanks for those links. Again, i really appreciate it.

 

I've sent emails to all the major brand style products i use. Will be interesting to see when or if i get a response!

[squirmingitch]

You're very welcome. 

 

As far as the inquiries on the products..... be aware you will probably get a # saying they don't use or add any gluten ingredients but will not say it's gluten free. That's a CYA statement & most of us go with it if it's from a well known company.

 

It's going to be real hard at first with the travel. Not sure I'd trust Subway with all those gluten buns flying around. If they are short trips, say overnight, you can bring some chicken with you & just eat it cold or room temp., add fruits & some gluten-free crackers, nuts for snacks. If you're going to major cities you can look for gluten-free restaurants & eat there.

 

There is a travel forum on here, check it out for tips & recommendations of places to eat. 

[AlMac]

Ok thank you.

 

Yeah i was on another thread finding out info on cross contamination. Probably not a good idea at all to go near subway with that bread. Thought i was playing it safe with salad boxes.

 

This is a really helpful forum and i'm glad i found it. Makes life a little easier and knowing there's others out there going through the same thing.  My work colleagues know about my gluten intolerance but dont treat it as something serious. Don't know if thats a good or bad thing. Anyway i'll have to plan trips ahead. Shame cos our boss really splashes out on lunches and dinners on us. I'll save him a fortune!   

[AlMac]

Sorry, one more thing.

 

With my appointment with the dermatologist on Monday, is there anything i should say to him that i want tested? They take my blood regularly, i know you guys had mentioned other things like a thyroid panel and vitamins check? Should i ask for that to be done? Is it a one off thing or regular?

[squirmingitch]

Early morning here & I just did a quick Google to find gluten-free dining in the UK. These are good reads. Make sure to read this first one completely --- you'll pick up great tips from it.

 

Open Original Shared Link

 

How about this? Cool! When the owner has celiac disease you know you've found a winner of a place to eat because they "get" it!

Open Original Shared Link

 

I would "vet" these before I jumped in feet first.

Open Original Shared Link

 

Open Original Shared Link

 

I'll be back later with some more thoughts & also will see if we can get you some people to answer your question about what specific tests you need to have done.

[squirmingitch]

Since you haven't been truly & wholly gluten-free, then this would apply to you even though it says "new celiacs". 

Open Original Shared Link

 

And these:

Open Original Shared Link

 

Plus a full thyroid panel.

 

Your derm may not do these test & instead refer you back to your doc for testing of those items. Make sure the derm or your doc maintain the testing re: Dapsone.

 

Also, I would have a talk with my boss sometime when he has time to sit down with you. First, make it clear that this is not going to affect your performance at work. But you should tell him that this is a serious disease & if you do not eat strict gluten-free, then there are serious consequences. And say that you are telling him this so he understands what you're going to need to do in terms of eating while on business trips. You can also educate your co-workers. You said they already know about your "gluten intolerance". First you do not have a "gluten intolerance" --- you are beyond that & you have celiac disease where any amount of gluten is verboten. You can let them know that it was not explained properly to you when you were dx'd & now, this many years later, you are finding out what the doc did not tell you and you are still learning all the new rules you have to follow. It sounds like you work with a great bunch of people & that's terrific! Who knows, when you find a totally gluten-free eatery, they might all decide to accompany you & eat with you there. You can drink hard liquor & wine and gluten free beer so enjoy!