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I have what may be a DH rash, but I began a gluten-free diet before my doctor recommended having a biopsy to confirm the diagnosis. My doctor’s recommendation for a biopsy was based on, in her words, a ‘low-positive’ tTG IgG result (My IgA result was negative, but total IgA was not tested). The rash has been so terrible and disruptive that I couldn't bear the thought of completing a gluten challenge to be diagnosed, so I thought I would rather wait and see if the gluten-free diet affects the rash over the next several months.  I’ve been eating gluten-free for six weeks now. After a month on the diet, I felt like the rash was receding: it was flattening out, not as itchy, and it was no longer affecting my ability to function in the daytime or sleep at night. About three days ago, I noticed increased itchiness and some of the previously receding rash patches have become inflamed again. I’ve also noticed new hives and intense itching on other patches of skin where no hives have popped up yet. The rash seems to be relapsing and spreading to new areas. These are my questions:

 

-I’ve seen from other posts that a DH biopsy can be falsely negative if a person is no longer eating gluten. But if I have active rash, how can there not be IgA deposits in my skin that a biopsy would detect?

-If I am ‘relapsing’, or the rash is spreading, is it a definite indicator that I have accidentally gotten gluten in my diet? In other words, does DH ever spontaneously relapse on a clean diet? If it only relapses and spreads when there’s gluten in the body, does that mean I haven't been perfect on the diet as I supposed I was, and could probably have a diagnosis through biopsy?

 

I’ve read that DH can be difficult to diagnose, and other skin issues can look like DH rash. I am still chasing a definitive diagnosis because I’m concerned that if the rash I have isn’t DH, I may be letting a different medical problem go undiagnosed and untreated. Thanks for reading this. I appreciate any thoughts you can offer.

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I have DH also

What I have found is that if I do  not take Dapsone fast enough or enough of it at the onset of a reaction, the reaction becomes histaminic.

Meaning that it no longer is based upon my bodies reaction to gluten itself, but my body is attacking itself

Remember DH is an Auto Immune disease not an allergy.

 

I either take a cortisone for 6 days or go to the doctor for a shot of it, to stop the reaction.

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To answer your 1st question ~~~ I don't know HOW the biopsy can be negative when we have the antibodies under our skin making us crazy with the itch but it is when you are gluten free. I do understand what you are saying & have wondered the same myself. Never the less, it is a fact. 

 

2nd question ~~~ NO, it is NOT a definitive indicator that you are getting cross contamination. The rash can wax & wane EVEN when you are strict gluten free. For that matter, the rash can wax & wane when you ARE eating gluten. I know. It seems ridiculous doesn't it? How can that be? It's the beast we call dh. This is exactly why we with dh, have to be vigilant as all hell to ensure there is no way we are getting gluten in any way. 

 

Dh is not just difficult to get a concrete dx for; it's damn near impossible. 

 

You are actually in an enviable position b/c your blood work showed at least low positive. Most with dh, show negative on the celiac blood panel. 

 

Your story is like a million others. You went gluten free prior to getting a biopsy & now you don't want to go back to eating gluten for 2 months in order to get an official dx. I can't blame you for not wanting to eat gluten but there's the rub..... Damned if you do & damned if you don't. 

How many people on here have said the same thing? "I want an official dx b/c I'm afraid it might be something else & i will possibly be ignoring some other medical problem". I understand but unless you are willing to go back to gluten fro 2 months, you aren't going to get that dx. Plain & simple as that. I know you don't want to hear that but there is no 2 ways about it. 

 

I would advise you not to go the route of mitchgam who posted above speaking about the cortisone. Steroids & dh do NOT mix. Steroids will help or even make the rash go away but the minute you stop them (oral) or the second the steroid shot has left your body --- it's rebound time! It's NOT pretty. Been there, done that. 

 

To mitchgam, I believe you are on a see-saw. First, Dapsone is supposed to be taken every single day at a steady dose. You sound like you are taking it rather willy nilly. You state you need to take the Dapsone "fast enough" & "enough of it". That is not the way it is supposed to be prescribed. If you need a higher dose to keep the dh at bay, then you just need a higher dose on a daily basis, not this up, down, up, down dosing you are doing. Secondly, you are making things worse by doing the cortisone pills & shots. This is why you are having so many "reactions". The cortisone wears off & BOOM! you are reactive beyond the Dapsone. 

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To answer your 1st question ~~~ I don't know HOW the biopsy can be negative when we have the antibodies under our skin making us crazy with the itch but it is when you are gluten free. I do understand what you are saying & have wondered the same myself. Never the less, it is a fact. 

 

2nd question ~~~ NO, it is NOT a definitive indicator that you are getting cross contamination. The rash can wax & wane EVEN when you are strict gluten free. For that matter, the rash can wax & wane when you ARE eating gluten. I know. It seems ridiculous doesn't it? How can that be? It's the beast we call dh. This is exactly why we with dh, have to be vigilant as all hell to ensure there is no way we are getting gluten in any way. 

 

Dh is not just difficult to get a concrete dx for; it's damn near impossible. 

 

You are actually in an enviable position b/c your blood work showed at least low positive. Most with dh, show negative on the celiac blood panel. 

 

Your story is like a million others. You went gluten free prior to getting a biopsy & now you don't want to go back to eating gluten for 2 months in order to get an official dx. I can't blame you for not wanting to eat gluten but there's the rub..... Damned if you do & damned if you don't. 

How many people on here have said the same thing? "I want an official dx b/c I'm afraid it might be something else & i will possibly be ignoring some other medical problem". I understand but unless you are willing to go back to gluten fro 2 months, you aren't going to get that dx. Plain & simple as that. I know you don't want to hear that but there is no 2 ways about it. 

 

I would advise you not to go the route of mitchgam who posted above speaking about the cortisone. Steroids & dh do NOT mix. Steroids will help or even make the rash go away but the minute you stop them (oral) or the second the steroid shot has left your body --- it's rebound time! It's NOT pretty. Been there, done that. 

 

To mitchgam, I believe you are on a see-saw. First, Dapsone is supposed to be taken every single day at a steady dose. You sound like you are taking it rather willy nilly. You state you need to take the Dapsone "fast enough" & "enough of it". That is not the way it is supposed to be prescribed. If you need a higher dose to keep the dh at bay, then you just need a higher dose on a daily basis, not this up, down, up, down dosing you are doing. Secondly, you are making things worse by doing the cortisone pills & shots. This is why you are having so many "reactions". The cortisone wears off & BOOM! you are reactive beyond the Dapsone. 

Dapsone has many side effects. Some are life threatening.  I do not wish to deal with or worry about those side effects. I take Dapsone only when needed and no more then needed. When the attack becomes histaminic Dapsone has no effect on it and only a cortisone stops the attack. For me the attacks progress from my arms to my face to my trachea and I have trouble breathing if I do nothing. 

 

As to rebound effect, it has never happened, not once. Once the cortisone wears off I am as good as new. I have gone as long as 9 months without an attack and mostly have them when for whatever reason i ingest , without realizing something with gluten in it. 

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Thanks, mitchgam and squirimingitch for your replies. There is such a steep learning curve with celiac and dh, Unfortunately, I can identify with the rebound effect. What I didn't say in my original post, because I thought that it was unrelated, is that I started a short course of prednisone for another issue a few days before the dh flared. The rash has worsened every day since I started tapering off. I realize that what's true for one may not be true for another, but the combination of steroids and dh seems to be a bad one for me. 

 

I can also identify with your concerns about dapsone, mitchgam. I read about the drug and have so far not taken it because I felt I'd be trading one set of problems for another serious set. It's not part of my treatment for now, but I don't know what the future holds. 

 

Oddly, it's comforting to know that dh can come and go even if you're eating 100% gluten free. I don't want the outbreaks, but neither do I want the depressed feeling that comes with thinking I somehow 'messed up' when I know that I have been diligent to avoid gluten. It may not be what I wanted to hear, squirmingitch, but I appreciate the plain truth. Now I can save the time and money I'd spend on seeking a definitive dh diagnosis (that I would not get anyway), accept the diagnosis from my blood work and move on. Thanks again!

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The issue is your admission of a short course of cortisone.

If like me where my bodies reaction to the DH sets off a histamine reaction, where my body attacks my skin as if it was a foreign body, a short corse will not stop it. 

Once thinking it would fade over time I had to be rushed to the ER due to trouble breathing.

 

It takes a full course sometimes two or two shots to totally end the reaction. 

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Thanks, mitchgam and squirimingitch for your replies. There is such a steep learning curve with celiac and dh, Unfortunately, I can identify with the rebound effect. What I didn't say in my original post, because I thought that it was unrelated, is that I started a short course of prednisone for another issue a few days before the dh flared. The rash has worsened every day since I started tapering off. I realize that what's true for one may not be true for another, but the combination of steroids and dh seems to be a bad one for me. 

 

I can also identify with your concerns about dapsone, mitchgam. I read about the drug and have so far not taken it because I felt I'd be trading one set of problems for another serious set. It's not part of my treatment for now, but I don't know what the future holds. 

 

Oddly, it's comforting to know that dh can come and go even if you're eating 100% gluten free. I don't want the outbreaks, but neither do I want the depressed feeling that comes with thinking I somehow 'messed up' when I know that I have been diligent to avoid gluten. It may not be what I wanted to hear, squirmingitch, but I appreciate the plain truth. Now I can save the time and money I'd spend on seeking a definitive dh diagnosis (that I would not get anyway), accept the diagnosis from my blood work and move on. Thanks again!

I am so glad to hear you understand & are willing to just move forward. That in itself, is a major step in the right direction. You will not spend weeks and months mentally stressing while trying to get a dx. The prednisone would make a dh biopsy negative for 2 months after quitting the prednisone so there's another factor most people don't know & more importantly most docs don't know.

 

Go through the dh photobank, you can see how I was at different times & I promise you I have not ONCE gotten cc'd, not once. 

https://www.celiac.com/gluten-free/topic/94056-dh-photo-bank/

 

If you haven't already..... read the Newbie 101, in fact, it doesn't hurt to go back over it about once a month for a few months:

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

 

The best advice I can give you is to not let this stuff make you question yourself. Make positive sure you are not getting ANY gluten & emblazon that on your brain & DO NOT doubt yourself because you get flares. If you are 100% gluten-free, then don't let the flares of the rash make you crazy. IMHO this rash is harder to beat mentally than it is physically. It will screw with your brain & you will wonder about every bite of food you take. Do NOT let if eff with your mind like that. I also advise not to eat out under any circumstances unless it's at a totally gluten-free restaurant. 

 

((((((HUGS))))))

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I have DH also

What I have found is that if I do  not take Dapsone fast enough or enough of it at the onset of a reaction, the reaction becomes histaminic.

Meaning that it no longer is based upon my bodies reaction to gluten itself, but my body is attacking itself

Remember DH is an Auto Immune disease not an allergy.

 

I either take a cortisone for 6 days or go to the doctor for a shot of it, to stop the reaction.

 

 

Dapsone has many side effects. Some are life threatening.  I do not wish to deal with or worry about those side effects. I take Dapsone only when needed and no more then needed. When the attack becomes histaminic Dapsone has no effect on it and only a cortisone stops the attack. For me the attacks progress from my arms to my face to my trachea and I have trouble breathing if I do nothing. 

 

As to rebound effect, it has never happened, not once. Once the cortisone wears off I am as good as new. I have gone as long as 9 months without an attack and mostly have them when for whatever reason i ingest , without realizing something with gluten in it. 

 

 

The issue is your admission of a short course of cortisone.

If like me where my bodies reaction to the DH sets off a histamine reaction, where my body attacks my skin as if it was a foreign body, a short corse will not stop it. 

Once thinking it would fade over time I had to be rushed to the ER due to trouble breathing.

 

It takes a full course sometimes two or two shots to totally end the reaction. 

Have you ever been tested for a wheat allergy? Do you know it's possible to be both celiac and also​ have a wheat allergy? What you describe with the trachea being affected and having trouble breathing even so much so as to have to go to the ER is indicative of an allergic or anaphylactic reaction. This is something serious that should be addressed. One day you might not be able to get to the ER in time. You may need to carry an Epipen. This kind of reaction is NOT dh. DH does not affect your trachea or cause trouble breathing. If you have bonafide medical texts or studies that state this happens with dh, then I would certainly appreciate a link to such information. If this is a valid, known reaction to dh then it would be of import to know, otherwise this is just your take on the situation as it happens to you & it doesn't do newbies any good to read such and scare the crap out of them. They do not need to come here and be given the impression this is a feature of dh when it is not.

I truly am concerned for you though mitchgam. This reaction you're having is not the dh affecting you but something else and I worry that there will be a day when you can't get to help fast enough. Generally these things get worse over time & allergic reactions become more severe. I worry that the next time, it may be a life threatening situation for you.

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Have you ever been tested for a wheat allergy? Do you know it's possible to be both celiac and also​ have a wheat allergy? What you describe with the trachea being affected and having trouble breathing even so much so as to have to go to the ER is indicative of an allergic or anaphylactic reaction. This is something serious that should be addressed. One day you might not be able to get to the ER in time. You may need to carry an Epipen. This kind of reaction is NOT dh. DH does not affect your trachea or cause trouble breathing. If you have bonafide medical texts or studies that state this happens with dh, then I would certainly appreciate a link to such information. If this is a valid, known reaction to dh then it would be of import to know, otherwise this is just your take on the situation as it happens to you & it doesn't do newbies any good to read such and scare the crap out of them. They do not need to come here and be given the impression this is a feature of dh when it is not.

I truly am concerned for you though mitchgam. This reaction you're having is not the dh affecting you but something else and I worry that there will be a day when you can't get to help fast enough. Generally these things get worse over time & allergic reactions become more severe. I worry that the next time, it may be a life threatening situation for you.

 

Thank you for your concern

I am under the care of a Medical Doctor, who is fully aware or what is going on

It is he who gave me the prescriptions to Dapsone and cortisone. 

I have lived with this for almost 20 years now

 

You are correct my reaction is not a feature of DH

As I have said DH brings on a full scale histamine reaction which is what causes the swelling in my eyes and throat.

That is why I take Dapsone at the first hint of gluten contamination and if it doesn't stop the reaction within a day, switch to cortisone and even then I take two courses of cortisone to stop the histamine reaction.

(or I go to the doctor twice for two shots of cortisone 5 days apart)

 

My DH is extreme as is my reaction to gluten poisoning. 

Most people with DH get a "simple" rash and as annoying at it may be, it is not life threatening, even if ignored, as it doesn't provoke a histamine reaction.

BUT, it is something to be aware that it can and anyone with DH needs to be alert and aware of that possiblilty.

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Okay, I see what you're saying now. Have you read this thread?

https://www.celiac.com/gluten-free/topic/105835-mast-cell-activation-syndrome-mcas/

I'm not implying that is what you have but I can't help but think there may be at least a kernel in there that might benefit you. 

 

Since you've been at this 20 years, I am wondering what are the most common ways that you are getting cc'd? Eating at restaurants? Eating at friends or family members homes? Once in a blue moon forgetting to read a label? Cross contamination in your own household? What? So far, I have not gotten accidentally glutened or cc'd once, not once; but I am not a risk taker. My dh is extreme. We have a gluten free household, no family gatherings as 99% of them have passed away & the remainder are too far away to realistically visit. We do not go out to eat ever. So my questioning you as to your sources of cc are so that I know what to beware of more than I already am. Hey, we can always learn something can't we? 

Something you said makes me curious. You talk about your dh being extreme & say also that your reaction to gluten poisoning is extreme.  Did you/do you have/get the gut issues or have you always been strictly dh? I had mild gut symptoms. 

Did you take Dapsone from the very first? Regularly & then were able to quit it except for when you get cc'd? Are you totally rash free except for when you get cc'd? If so, how many years was it before you were fully rash free ~~~ fully?

My 3 year mark gluten-free is coming up in Dec. and I still have the rash ~~~ a billion, trillion times improved but still, I have some "itchies" as I call them -- mild & short lived. I can live with this but I'd rather not if you know what I mean. :D  I can hear you saying, "Dapsone". No, I am allergic to sulfa drugs so Dapsone is not an option. Although there was a time when I would have gladly downed Dapsone had someone given it to me. It would have killed me or resolved the rash ~~ I would not have cared which as long as I no longer itched & burned.

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Okay, I see what you're saying now. Have you read this thread?

https://www.celiac.com/gluten-free/topic/105835-mast-cell-activation-syndrome-mcas/

I'm not implying that is what you have but I can't help but think there may be at least a kernel in there that might benefit you. 

 

Since you've been at this 20 years, I am wondering what are the most common ways that you are getting cc'd? Eating at restaurants? Eating at friends or family members homes? Once in a blue moon forgetting to read a label? Cross contamination in your own household? What? So far, I have not gotten accidentally glutened or cc'd once, not once; but I am not a risk taker. My dh is extreme. We have a gluten free household, no family gatherings as 99% of them have passed away & the remainder are too far away to realistically visit. We do not go out to eat ever. So my questioning you as to your sources of cc are so that I know what to beware of more than I already am. Hey, we can always learn something can't we? 

Something you said makes me curious. You talk about your dh being extreme & say also that your reaction to gluten poisoning is extreme.  Did you/do you have/get the gut issues or have you always been strictly dh? I had mild gut symptoms. 

Did you take Dapsone from the very first? Regularly & then were able to quit it except for when you get cc'd? Are you totally rash free except for when you get cc'd? If so, how many years was it before you were fully rash free ~~~ fully?

My 3 year mark gluten-free is coming up in Dec. and I still have the rash ~~~ a billion, trillion times improved but still, I have some "itchies" as I call them -- mild & short lived. I can live with this but I'd rather not if you know what I mean. :D  I can hear you saying, "Dapsone". No, I am allergic to sulfa drugs so Dapsone is not an option. Although there was a time when I would have gladly downed Dapsone had someone given it to me. It would have killed me or resolved the rash ~~ I would not have cared which as long as I no longer itched & burned.

I am not diligent, I eat out all the time, but i have learnt what "should" and what food "should not" contain gluten. Sometimes am surprised anyway, although not often.

 

The fact that your outbreak doesn't end, indicates that you are continually being exposed to gluten, even if you don't know it.

Remember your bodies reaction to gluten only gets worse as you age, so you really need to figure out why you are having the reaction.

Go to a doctor and take as many courses of cortisone as you must to end it

If it comes back then something you are eating contains gluten

I once got an attack from the dental mask used during a root canal. 

Chewing gum and so many other things you wouldn't think contain gluten.

if necessary go on a Macrobiotic diet to prove it is food that is causing it.

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I am not diligent, I eat out all the time, but i have learnt what "should" and what food "should not" contain gluten. Sometimes am surprised anyway, although not often.

 

The fact that your outbreak doesn't end, indicates that you are continually being exposed to gluten, even if you don't know it.

Remember your bodies reaction to gluten only gets worse as you age, so you really need to figure out why you are having the reaction.

Go to a doctor and take as many courses of cortisone as you must to end it

If it comes back then something you are eating contains gluten

I once got an attack from the dental mask used during a root canal. 

Chewing gum and so many other things you wouldn't think contain gluten.

if necessary go on a Macrobiotic diet to prove it is food that is causing it.

No, it is absolutely not gluten. No way, no how. I am rabid about gluten. We have a gluten free household. There is no gluten in any of the food we eat. Dog is fed gluten-free food. I don't take any meds so that's not an issue.

DH can take years to resolve even on a strict gluten-free diet; that is known and is in medical texts. 

 

BUT

 

I was doing better 6 months ago. I have found the reason. Carrageenan! ARRRRRRRRRRRGGGGGGGGGGG!!!!!!!!!!!!!!!!!!!!!!!! :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:

Carageenan is FULL of iodine & carageenan will get you every time with the iodine content.

About 6 months ago we started drinking Lactaid milk mainly because my husband was paranoid about getting gassy from regular milk. DAMN! Lactaid milk has carrageenan in it!!!!!!! Why????????!!!!!!!! Why in hell would they feel the need to put carrageenan in milk for heaven's sake????!!!!!

 

Well, no more Lactaid milk for us. 

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I just researched it & discovered the calcium enriched Lactaid has the carageenan in it but the NON calcium enriched does NOT contain carageenan. I had noticed a couple months ago, that it now said calcium enriched on it but my store no longer carries the non calcium enriched Lactaid. So that solves that riddle.

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(runs to fridge and checks lactaid carton...!  lolz) 

 

i avoid iodine, as well.  i seem to do much better without too much.  i still eat some fish, so i am still getting some, but i try not to take too much ibuprofen...  seems to calm the itchies.  it's like walking a tightrope sometimes, isn't it, squirmy?   :unsure:  so much better than scratching your skin...  off...   <_<  don't miss those days!  

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No, it is absolutely not gluten. No way, no how. I am rabid about gluten. We have a gluten free household. There is no gluten in any of the food we eat. Dog is fed gluten-free food. I don't take any meds so that's not an issue.

DH can take years to resolve even on a strict gluten-free diet; that is known and is in medical texts. 

 

BUT

 

I was doing better 6 months ago. I have found the reason. Carrageenan! ARRRRRRRRRRRGGGGGGGGGGG!!!!!!!!!!!!!!!!!!!!!!!! :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:  :ph34r:

Carageenan is FULL of iodine & carageenan will get you every time with the iodine content.

About 6 months ago we started drinking Lactaid milk mainly because my husband was paranoid about getting gassy from regular milk. DAMN! Lactaid milk has carrageenan in it!!!!!!! Why????????!!!!!!!! Why in hell would they feel the need to put carrageenan in milk for heaven's sake????!!!!!

 

Well, no more Lactaid milk for us. 

While I respect your right to chose, I do not wish to suffer for months or years with the effect of DH and for the life of me I don't understand why you do. 

At the first hint of an outbreak i take Dapsone and if not resolved within 2 days I either take the cortisone the doctor gave me or go to him for a shot of it.

As I have gotten older the reaction becomes more severe and it takes 2 rounds to clear me.

But, within a week of the second round i am itch free.

 

You do know it is possible to be allergic to other things then gluten?

Maybe what you have is multiple allergies 

OR, maybe just as my DH becomes histaminic swelling my eyes and trachea, yours progresses differently, making you sensitive to other allergens that you otherwise are not.

(my brother can drink  whole milk when gluten free but only A+ milk when not)

 

20 years ago being on a gluten free diet was a trial, today it is easy.

If you continue to have symptoms despite living gluten free, something else must be going on.

20 years ago few if any doctors even knew what i was talking about, today they do.

I suggest you find one that is willing to work with you trial and error to find out what is going on.

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Mitchgam, pardon me for jumping in here, but you DO realize that celiac is NOT an allergy, don't you? It is an intolerance, which is a totally different thing. It sounds to me that what you are dealing with is a true allergy. Did your doctor do a biopsy of your DH, and if so, how did he do it? Did he take a biopsy of an active lesion or did he biopsy the skin right near an active lesion?

 

Oh, and here is an article from the NIH that explains that it is common for people who remain strictly gluten-free to still have DH flares even two years later: http://celiac.nih.gov/Dermatitis.aspx

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(runs to fridge and checks lactaid carton...!  lolz) 

 

i avoid iodine, as well.  i seem to do much better without too much.  i still eat some fish, so i am still getting some, but i try not to take too much ibuprofen...  seems to calm the itchies.  it's like walking a tightrope sometimes, isn't it, squirmy?   :unsure:  so much better than scratching your skin...  off...   <_<  don't miss those days!  

 

You are so right notme! We haven't tackled seafood yet & also no carageenan except for my screw up with the Lactaid. :o Also no iodized salt yet. Other than that, we are good to go on everything else iodine. But this little escapade with carageenan tells us in no uncertain terms that we are not yet ready for seafood.

It's interesting, I can do Tylenol w/o consequences to the rash but every time I take Tylenol, I get major indigestion, full stomach or no. Go figure. I can now take Advil (which works better anyway for me) but I do have to be judicious about it or the rash gets irritated. But the Advil does not upset my tummy. 

 

 

While I respect your right to chose, I do not wish to suffer for months or years with the effect of DH and for the life of me I don't understand why you do. 

At the first hint of an outbreak i take Dapsone and if not resolved within 2 days I either take the cortisone the doctor gave me or go to him for a shot of it.

As I have gotten older the reaction becomes more severe and it takes 2 rounds to clear me.

But, within a week of the second round i am itch free.

 

You do know it is possible to be allergic to other things then gluten?

Maybe what you have is multiple allergies 

OR, maybe just as my DH becomes histaminic swelling my eyes and trachea, yours progresses differently, making you sensitive to other allergens that you otherwise are not.

(my brother can drink  whole milk when gluten free but only A+ milk when not)

 

20 years ago being on a gluten free diet was a trial, today it is easy.

If you continue to have symptoms despite living gluten free, something else must be going on.

20 years ago few if any doctors even knew what i was talking about, today they do.

I suggest you find one that is willing to work with you trial and error to find out what is going on.

I told you before that I can not take Dapsone.I am allergic to sulfa drugs & Dapsone is in the sulfa class. I was doing great before the carageenan incident. I was not "suffering" with the rash. the carageenan pushed me over the edge or should I say the great quantity of iodine in the carageenan pushed me over the edge and caused a flare of the rash.

As to steroids. You mentioned earlier that if I would not do short doses of it, it would work. You said that without ever knowing how long I was on steroids -- you just assumed something you did not know.  I was, both before I found out it was dh & therefore celiac as well as after I found out it was dh; on long term oral Dexamethasone  (a super steroid) several times. 2 months at the time. Is that long enough for you? Each & every time I got off it, the rash came roaring back with a vengeance not to be believed!!!!! WORSE than BEFORE I took the steroid!!!! MANY, MANY on here have had the same experiences with the steroids. Apparently the cortisone works for your histaminic reaction but that does not mean it will work for my dh without consequences. 

 

As to other allergies, I know the things I am allergic to & don't eat them or take them such as sulfa drugs or penicillin. To repeat;  I was doing great as far as the rash goes BEFORE the run in with the carageenan so I see no need to get paranoid about possible other allergies at this time. From past experience, I know that the overload of iodine the carageenan dumped in me will be out of my system quickly & in mere days I will be back to where I was prior to the carageenan which was a single "itchy" or maybe 2 once in a while. 

 

I can say this:

The carageenan incident while not pleasant, has had the unexpected benefit of finding out exactly where my rash is progress wise and believe me, it's thrilling to know it is now very, very mild with heavy iodine exposure. This shows me a monumental number of the antibodies are out of my skin. 

 

I respect your right to eat out but for the life of me I do not understand why you are not diligent at all about it and get the unexpected surprise exposure to gluten when you know that it has such an effect on you that you feel you must go through 2 courses of cortisone shots for your histaminic reaction. You have been at this for 20 years and are still taking gluten hits. You know that each time you get hit it damages your villi. I do not understand non diligence.

 

I have an excellent, thoroughly well informed health care provider.

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Mitchgam, pardon me for jumping in here, but you DO realize that celiac is NOT an allergy, don't you? It is an intolerance, which is a totally different thing. It sounds to me that what you are dealing with is a true allergy. Did your doctor do a biopsy of your DH, and if so, how did he do it? Did he take a biopsy of an active lesion or did he biopsy the skin right near an active lesion?

 

Oh, and here is an article from the NIH that explains that it is common for people who remain strictly gluten-free to still have DH flares even two years later: http://celiac.nih.gov/Dermatitis.aspx

While DH is classified as part of Celiac disease it is really an auto immune disease. When you (if you have DH) eat gluten you body sends out antibodies attacking your skin as if under attack.

In me it sets off a histamine reaction if left unchecked. Exactly the same as an allergy.

 

I have been to multiple doctors all agree as to what I have, but as one put it, to take the blood test I would need to ingest gluten for a few weeks. In my case that would require hospitalization. 

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CELIAC is an autoimmune disease. And DH is the celiac manefested in the skin. And no matter what your doctors may have said, if you haven't had a biopsy, especially with your far from typical for DH symptoms, odds are strongly AGAINST you having actual DH, and strongly in favor to your having a wheat ALLERGY.

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You are so right notme! We haven't tackled seafood yet & also no carageenan except for my screw up with the Lactaid. :o Also no iodized salt yet. Other than that, we are good to go on everything else iodine. But this little escapade with carageenan tells us in no uncertain terms that we are not yet ready for seafood.

It's interesting, I can do Tylenol w/o consequences to the rash but every time I take Tylenol, I get major indigestion, full stomach or no. Go figure. I can now take Advil (which works better anyway for me) but I do have to be judicious about it or the rash gets irritated. But the Advil does not upset my tummy. 

 

 

I told you before that I can not take Dapsone.I am allergic to sulfa drugs & Dapsone is in the sulfa class. I was doing great before the carageenan incident. I was not "suffering" with the rash. the carageenan pushed me over the edge or should I say the great quantity of iodine in the carageenan pushed me over the edge and caused a flare of the rash.

As to steroids. You mentioned earlier that if I would not do short doses of it, it would work. You said that without ever knowing how long I was on steroids -- you just assumed something you did not know.  I was, both before I found out it was dh & therefore celiac as well as after I found out it was dh; on long term oral Dexamethasone  (a super steroid) several times. 2 months at the time. Is that long enough for you? Each & every time I got off it, the rash came roaring back with a vengeance not to be believed!!!!! WORSE than BEFORE I took the steroid!!!! MANY, MANY on here have had the same experiences with the steroids. Apparently the cortisone works for your histaminic reaction but that does not mean it will work for my dh without consequences. 

 

As to other allergies, I know the things I am allergic to & don't eat them or take them such as sulfa drugs or penicillin. To repeat;  I was doing great as far as the rash goes BEFORE the run in with the carageenan so I see no need to get paranoid about possible other allergies at this time. From past experience, I know that the overload of iodine the carageenan dumped in me will be out of my system quickly & in mere days I will be back to where I was prior to the carageenan which was a single "itchy" or maybe 2 once in a while. 

 

I can say this:

The carageenan incident while not pleasant, has had the unexpected benefit of finding out exactly where my rash is progress wise and believe me, it's thrilling to know it is now very, very mild with heavy iodine exposure. This shows me a monumental number of the antibodies are out of my skin. 

 

I respect your right to eat out but for the life of me I do not understand why you are not diligent at all about it and get the unexpected surprise exposure to gluten when you know that it has such an effect on you that you feel you must go through 2 courses of cortisone shots for your histaminic reaction. You have been at this for 20 years and are still taking gluten hits. You know that each time you get hit it damages your villi. I do not understand non diligence.

 

I have an excellent, thoroughly well informed health care provider.

Years ago, before I figured out what was wrong, I thought I had some form of skin parasites. I found a forum where people who thought likewise would talk about their symptoms, many similar to mine (though some claimed to talk to them).

Upon finding out what I had I wrote on the forum about DH and that it might not be Skin Parasites. I was immediately banned from the forum.

 

My point is that just because you (and your doctor) think you are doing the best, maybe you need to look at other options.

 

I eat out and don't worry, I go 6 to 9 months between attacks and mostly they are my fault for lack of diligence. 

I understand you can't take Dapsone, but maybe the problem is the form of cortisone your doctor is giving you is not strong enough

I take Pregnasone (spelling might be off) 6 one day, 5 the next, 4 the day after. At 40 (when this started) I only needed to take one course, now I take two.

This is a progressive disease. As you get older it will get more severe. Our antibody system breaks down as we age.

Don't wait too long to investigate further.

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CELIAC is an autoimmune disease. And DH is the celiac manefested in the skin. And no matter what your doctors may have said, if you haven't had a biopsy, especially with your far from typical for DH symptoms, odds are strongly AGAINST you having actual DH, and strongly in favor to your having a wheat ALLERGY.

I and every single doctor I have ever been to about this, and I have traveled to specialists in the field would totally disagree.

You are welcome to believe that, but it is not true from a medical perspective.

DH and Celiac disease are classified as Celiac the same way Pneumonia and TB are pulmonary disease. Both have the same root cause but both effect different biological functions in your body. I do not get gas or diarrhea from eating gluten. I only know I am having an attack when i feel an adrenalin surge. One bite of bread no matter how small sets me off.

 

I have sat though lectures and read about AG4 proteins and antibodies way over my head. You are welcome to do so too, if you think you can understand it. 

But, when I bring them to my MD, this is about all I can get out of his explanation.

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I told you that I was doing fine rash wise before the carageenan. Until & unless that changes post carageenan there is no reason to be worried about anything else. i don't jump at shadows.

 

Personally, I think steroids are dangerous drugs to be avoided if possible. Yes, people sometimes need them & I have had real need of them before but I am not going to take any steroids when I don't need them. Further, you seem to be unwilling to accept the fact that the vast majority of us with dh have reported terrible rash back lash from steroid use. And the people reporting this have had a wide array of steroids & especially prednisone!

 

I agree with Bartful. I think you have a wheat allergy. Never, ever, never, have I seen any bonafide medical documentation that dh causes or can cause a histaminic reaction of the type you describe. I have read multitudes of medical information stating what you experience with the trachea & eyes as being allergy.

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I and every single doctor I have ever been to about this, and I have traveled to specialists in the field would totally disagree.

You are welcome to believe that, but it is not true from a medical perspective.

DH and Celiac disease are classified as Celiac the same way Pneumonia and TB are pulmonary disease. Both have the same root cause but both effect different biological functions in your body. I do not get gas or diarrhea from eating gluten. I only know I am having an attack when i feel an adrenalin surge. One bite of bread no matter how small sets me off.

 

I have sat though lectures and read about AG4 proteins and antibodies way over my head. You are welcome to do so too, if you think you can understand it. 

But, when I bring them to my MD, this is about all I can get out of his explanation.

No, no, no! Dh IS celiac disease! you have been given links to the medical proof of that. The U of Chicago Celiac Disease Center is one of the premier authorities if not the premier authority on celiac disease. 

 

Not all celiacs get GI symptoms. Did you know there is such a thing as silent celiac disease where there are NO symptoms at all? It's true. But those people have villi damage never the less.

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No, no, no! Dh IS celiac disease! you have been given links to the medical proof of that. The U of Chicago Celiac Disease is one of the premier authorities if not the premier authority on celiac disease. 

 

Not all celiacs get GI symptoms. Did you know there is such a thing as silent celiac disease where there are NO symptoms at all? It's true. But those people have villi damage never the less.

Sorry, I am not going to argue with you, I have been to too many specialists all of whom agree with what I say to continue a discussion on semantics with you.

My brother has no symptoms, yet tested postivie and my son has DH too.

When and if your systems get worse as you age, you might rethink your opinion.

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Mitch, Mitch, Mitch. I'm so sorry you have been mislead to the point you are suffering for it. Please, read these articles (plus the one I linked to earlier from the NIH). National Institutes of Health, The Mayo Clinic, and the University of Chicago know what they are talking about, and yet because your doctor who didn't even do a biopsy on you gives you false information he has not only mislead you about your condition, but I believe he has actually put your life in danger. Celiac will kill a person slowly, but a true allergy can kill a person right NOW.

 

Please, go get a biopsy. And get it from a GOOD dermatologist. SHOW him the links provided here so he will know how to do it right.

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