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Another Newbie With Questions And 2 Glasses Of Wine


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33 replies to this topic

#1 Blaze422

 
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Posted 31 October 2013 - 08:17 AM

I have posted on another thread, but I thought I should share my story and see what ya'll think. I apologize in advance of the rambling nature of this post :)
I'm a 56 male who takes no prescriptions, but also doesn't drink water. I'll have 2 glasses of coffee and 2 glasses of wine, but not because I'm thirsty.

I share that because when I began having itchy earlobes and neck/hairline rash and a few random bumps on my knees, fingers and gig toe...the dermatologist told me it was eczema. Stop taking 30 minute hot baths, use Dove soap, Switch to Dreft detergent , drink 8 glasses of water and use lots of Curave lotion.

Fast forward 3 months and I have seen 3 dermatologists and used several steroid ointments with absolutely to relief. I became convinced that I might have DH...but my itch is 3-4 on a 10 point scale. I haven't seen anywhere that DH can have mild itch. (I confess that at least I haven't seen it)
My son in law is extremely gluten intolerant (but no Celiac) and I have tried to avoid gluten but have not been obsessed. I have been avoiding ""bad" foods and following the instructions of the dermaotolgists but every week there's another area of rash.

My shoulders and low back got rashes...but when my elbows got beet red rashes, even the dermatologist agreed that we might be dealing with DH. She performed a biopsy on 2 locations and they both came back atopic dermatitis. 2 weeks later I requested bloodwork for allegens and IgA, and also got patch tested on my back.

Bloodwork was negative except for dander and mites ( dermatologist says they would affect respiratory, not skin)
Patch showed sensitivity to latex and perfumes.

Problem is that now my back is significantly worse. Perhaps the tape is the cause...but it's been over a week since the tape was taken off. The beet red elbows healed 3 weeks ago...now one is flaring back up.
I currently have rashes on my wrists, hairline, scattered across my back...from my neck to my butt ..like a light hit of buckshot. One elbow, and an area above my groin. One week it appears on one clavicle...the next week the other also..

So yesterday I went back to my dermatologist and she is surprised..wow...that looks pretty bad. I am there to get lab order for CBC and G6PD prior to starting a stair-step Dapsone protocol ( 25mg 4xday...increased by 25mgx4 each week). Her attitude is that the rashes could be a hard mystery to solve..it's all about figuring out the allergen. But she is totally open to the possibility that I have DH...and that not all victims...I mean patients exhibit the same pattern or symptoms. I will go strict gluten-free and use the Dapsone to see if the rashes go away.

OK...the bottom line is that I am confused about so much of what is going on...and kind of hope it is DH so I have answers.My primary question is HOW MANY OF YA'LL TAKE DAPSONE? Some questions/ thoughts
1. Is it true that DH rashes sometimes a medium itchy?
2. I have read about false negatives...just recently read that steroid ointments can screw up the biopsy accuracy. Is that true and any chance of a link to the source.
3. I am told that I had a positive patch result to latex..but I'm a dentist and have worn latex gloves for 30 years and never had any redness of my hands from the gloves. ( I have switched to non-latex, nitrile gloves) Is this explainable?
4. Some-one posted that their niece had a peanut/tree nut allergy. My understanding is that food allegies like that would elicit a tongue or lip sensation...breathing issues etc...Can a food allergy ( or latex for that matter) explain migrating rashes that I have been dealing with?
5. I read that if you have issues with latex, you might also have issues with avocados, bananas, tomatoes
etc. Then there's the iodine issue. My plan is to avoid gluten, iodine, avacados etc and take Dapsone.
If that doesn't work...I'm going to be significantly bummed.
6. I'm still drinking my red wine.

Edited by Blaze422, 31 October 2013 - 10:37 AM.

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#2 bartfull

 
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Posted 31 October 2013 - 09:44 AM

I have read that allegies and intolerances to sulfites can cause rashes. I have also read that the grapes red wine is made of contain sulfites naturally.

 

I had to give up my red wine years ago because it caused the big D within a couple of sips. There is no reason it should - a lot of celiacs can drink red wine with no problems, but being a lover of a good cabernet or burgandy, it broke my heart to give it up. I hope that's not what is causing your problem, but you might ask your dermatologist about it.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#3 squirmingitch

 
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Posted 31 October 2013 - 10:38 AM

Blaze, I am on limited time at the moment so will answer what I can in a quickie session for now. 

 

DH is intensely itchy, so itchy it consumes your entire mind, so itchy it is called the suicidal itch. It's a 30 on a scale of 1 to 10. Having said that; i will say that we don't know everything about dh. Perhaps, just perhaps you have dh & it's in the infantile stages & perhaps, just perhaps, the intensity is less in the infantile stages for some people. I will also say that celiac disease is associated with any # of skin conditions/rashes.

 

Steroid use  within 2 or 3 months, either topical or oral will cause a false negative in either skin biopsy for dh or in celiac blood panel. I can provide links to back up what I say but will have to find them as I am a poor bookmark organizer so will have to check back later with those links.

 

As to your #3: Personally, I'm not so sure about those patch tests but that's just MHO. You could use latex gloves for 30 years & have no problem & then 1 day you develop an allergy to it. Especially if you have celiac disease. We tend to develop allergies to things.

 

As to your #4: I have read the same thing. In MHO I don't think that would cause migrating rashes.

 

As to your #5: I am concerned when you say "avoid" gluten. If you are going to test it then you can not just avoid gluten; you have to be rabid 1000% gluten free otherwise you are wasting your time. And I will warn you that if you find you still believe you have dh & want to do a gluten challenge then you may break out like never before. Also, you will have to be actively consuming a normal gluten diet (not a light gluten diet) in order to have a dh biopsy done. 

 

I read your post on the Dapsone thread yesterday & was going to respond but unexpected events occurred here which prevented me from responding prior to now. I agree with the testing the derm wants to do before & while you are on Dapsone. Those are good things!

 

You mention the rash appearing one week on 1 clavicle & the next week on the other. DH does like to present bilaterally or "ghosting" on opposite sides of the body in the same location. But it doesn't always present that way.


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#4 Blaze422

 
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Posted 31 October 2013 - 02:01 PM

Blaze, I am on limited time at the moment so will answer what I can in a quickie session for now. 

 

DH is intensely itchy, so itchy it consumes your entire mind, so itchy it is called the suicidal itch. It's a 30 on a scale of 1 to 10. Having said that; i will say that we don't know everything about dh. Perhaps, just perhaps you have dh & it's in the infantile stages & perhaps, just perhaps, the intensity is less in the infantile stages for some people. I will also say that celiac disease is associated with any # of skin conditions/rashes.

 

Steroid use  within 2 or 3 months, either topical or oral will cause a false negative in either skin biopsy for dh or in celiac blood panel. I can provide links to back up what I say but will have to find them as I am a poor bookmark organizer so will have to check back later with those links.

 

As to your #3: Personally, I'm not so sure about those patch tests but that's just MHO. You could use latex gloves for 30 years & have no problem & then 1 day you develop an allergy to it. Especially if you have celiac disease. We tend to develop allergies to things.

 

As to your #4: I have read the same thing. In MHO I don't think that would cause migrating rashes.

 

As to your #5: I am concerned when you say "avoid" gluten. If you are going to test it then you can not just avoid gluten; you have to be rabid 1000% gluten free otherwise you are wasting your time. And I will warn you that if you find you still believe you have dh & want to do a gluten challenge then you may break out like never before. Also, you will have to be actively consuming a normal gluten diet (not a light gluten diet) in order to have a dh biopsy done. 

 

I read your post on the Dapsone thread yesterday & was going to respond but unexpected events occurred here which prevented me from responding prior to now. I agree with the testing the derm wants to do before & while you are on Dapsone. Those are good things!

 

You mention the rash appearing one week on 1 clavicle & the next week on the other. DH does like to present bilaterally or "ghosting" on opposite sides of the body in the same location. But it doesn't always present that way.

Thanks to you both. By avoiding gluten, I meant that the list will not be only gluten.. but include latex and the foods in the latex family. I will also avoid wine...bummer...

A couple of years I was on the HCG diet...no sugars, wine , 500 calories a day and  very restricted diet of 1 lean protein and one veg off a short list of choices. 8 glasses water at a minimum.  I felt great.

My plan is to restrict my diet to baked chicken with garlic powder ( I have been eating a lot of rotisserie chicken) , apple sauce, un sweetend almond milk etc. Things that should be  safe... And do the Dapsone as a trial.

Can I get an opinion on how many on this website currently use or once used Dapsone. I also really want to know if other DH sufferers had moderate itchy rashes or did everyone's were crazy bad...

Thanks to all!


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#5 mendylou

 
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Posted 31 October 2013 - 02:22 PM

Thanks to you both. By avoiding gluten, I meant that the list will not be only gluten.. but include latex and the foods in the latex family. I will also avoid wine...bummer...

A couple of years I was on the HCG diet...no sugars, wine , 500 calories a day and  very restricted diet of 1 lean protein and one veg off a short list of choices. 8 glasses water at a minimum.  I felt great.

My plan is to restrict my diet to baked chicken with garlic powder ( I have been eating a lot of rotisserie chicken) , apple sauce, un sweetend almond milk etc. Things that should be  safe... And do the Dapsone as a trial.

Can I get an opinion on how many on this website currently use or once used Dapsone. I also really want to know if other DH sufferers had moderate itchy rashes or did everyone's were crazy bad...

Thanks to all!

I have been gluten free for 3 years.  My DH was so bad when I started gluten free I was planning to check myself in somewhere.  I could not sleep, I itched all nite.  Three years later I still have breakouts but they are not as itchy.  I itch the worst when my body gets warm.  That may be due to room temps, outside temps, level of activity, stress.  I thought going gluten free it would clear up much sooner, but I seemed to get even more sensitive as time went on.  However it is still better than it was.  I would never go back and purposely ingest gluten.  I have never used dapsone and other ointments, etc don't seem to help much. For me keeping cool seems to be the best, however that is hard to do in some environments.


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#6 squirmingitch

 
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Posted 31 October 2013 - 02:25 PM

I think most of the dh sufferers that did try Dapsone & could not tolerate it (side effects) as well as those who did fine on it do not visit the site anymore. I will say that from my experience on the site; the majority who tried it had side effects too badly to stay on it. I have never tried it & don't believe I can b/c I'm allergic to sulfa drugs as is the case with many it seems.

 

Also, from my experience on here; pretty much 100% had crazy bad, bone deep itch. You can't sleep @ night & if you fall asleep you will be woken in short order from the itching. It's just insane!!!!

 

I found a couple links for you re: the steroids affecting biopsies. The biopsy is looking for IGA deposited under the skin which is what the rash results from. These links refer to steroid use affecting the IGA in the celiac blood work & state 1 month. The skin is different & would take longer (just as it takes longer to get the antibodies out of the skin) to get out of the skin. But judge for yourself.

 

 
 
Now, I'm outta here. It's our 40th anniversary today & I intend to enjoy what's left of it.

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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#7 sisterlynr

 
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Posted 19 November 2013 - 12:27 AM

I made notes on the Dapsone thread that I started.  

 

The itch is intense and when I first took Dapsone I had relief for about 4 months.  The lesions started healing and the itching was reduced greatly.  That is why they gave me the DH diagnosis.  If your rash responds to Dapsone, it is a sure sign it is DH, per my doctors.  My blood count came up and I begin to lose weight and all looked good for me.  After that, I suppose the sulfa reaction kicked in and caused a different rash and intensified the itching all over my body.

 

I was told that before doctors would biopsy via EGD or even the skin, they would try Dapsone and if the rash cleared, it confirmed DH.  

 

When I asked Dapsone users to respond, I realized something was wrong as several wrote their rash healed within days even though eating gluten.  I knew my rash was either not DH or I was having a reaction to the medication.


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Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~


#8 pricklypear1971

 
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Posted 19 November 2013 - 11:24 AM

When my dh started it wasn't bilateral and it didn't itch. It also looked like scabies, especially when treated with steroids. The first few breakouts weren't very itchy (I'd say 3-4), but they escalated.

I was using a minuscule amount of steroid cream - less than what covered a qtip - and it affected the rash. Your mileage and effect may vary.

Iodine can be like water on a grease fire re:dh. A low iodine trial is well worth it. I used an LI diet in lieu of dapsone since it worked so well (and I tolerate most meds poorly, so I'm sure I would have grown antennae or some such on it).

Don't starve yourself. If this is dh start with an unprocessed gluten-free diet, try LI and see what happens. That's restrictive enough, right?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#9 Blaze422

 
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Posted 23 November 2013 - 01:40 PM

When my dh started it wasn't bilateral and it didn't itch. It also looked like scabies, especially when treated with steroids. The first few breakouts weren't very itchy (I'd say 3-4), but they escalated.
I was using a minuscule amount of steroid cream - less than what covered a qtip - and it affected the rash. Your mileage and effect may vary.
Iodine can be like water on a grease fire re:dh. A low iodine trial is well worth it. I used an LI diet in lieu of dapsone since it worked so well (and I tolerate most meds poorly, so I'm sure I would have grown antennae or some such on it).
Don't starve yourself. If this is dh start with an unprocessed gluten-free diet, try LI and see what happens. That's restrictive enough, right?


Thanks to all...
I have been gluten-free and LI and lactose free for past 3 weeks..but still have my wine. I have been taking dapsone 50mg for 2 weeks and 100 mg daily for 1 week.
I have seen significant improvement on ears, arms and back...but still have neck hairline and clavicle rashes. More frustrating is I am still seeing new bumps here and there.
I have read that Dapsone provides semi-miraculous results in 2-3 days and I don't know ind my improvement is from the meds or the diet....since I'm still itching and seeing new spots. Finally, my pharmacist says Dapsone actually can take a month or more to work...and since I'm side effect free I'm wondering if the dosage should be increased at some point.
My action plan is to continue meds and lifestyle and re-evaluate dosage in another month.
Anyone have dapsone insights?
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#10 Blaze422

 
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Posted 23 November 2013 - 06:27 PM

Sorry, but re-reading my post I'm thinking I may have been a little vague with my situation.
My bloodwork and biopsy was negative for DH but since I used a steroid cream, the negative result is "contaminated".
My dermatologist thinks I might have DH and looking at the photo bank, ..etc , I think I have DH.
So my dilemma is that I don't really know if my rashes are responding to my lifestyle changes or the Dapsone.
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#11 Blaze422

 
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Posted 11 December 2013 - 10:07 AM

This thread is turning into a diary, so although I may be being self indulgent, I thought I'd share some thoughts. And a twist..

 

Dec 5th marked about 5 weeks on dapsone, and saw my dermatologist and told her I was thinking about discontinuing dapsone and see if rash, itch worsen.  She noted that my improvement from dapsone was not as great as she was hoping, but when I showed her my pre-dapsone pics, she admitted that yes, the improvement was significant. She also suggested that in her limited experience with DH, her patients had crazy itching and that the dapsone relieved that crazy itching.  Since my itchiness was not crazy to begin with and the rashes have decreased significantly, perhaps the dapsone is confirming DH...then again, my diet etc may be the cause of my improvement.

 

So, I have been off the dapsone for a week and my itchiness is back full strenght, and the rash looks redder etc . My wife got mad when I told her I was going to get back on the dapsone.  I started re-reading some of the posts here and see how connected gluten is with iodine, but I never looked into the salicylate connection.  I would read about people being gluten-free, LI and low sal...and never thought about what does "sal" mean? :huh:   In my gluten-free/LI diet, I have been apparently loading up on salicylalates. Coffee, Wine, Orange Juice, Tomatos and spagetti sauce, cumin, garam masala, and cocunut oil etc.

What I found by googling " salicylate rash" was that being HIGH SAL is what I've been and maybe am sensitive to Salicylates. 

 

So, before I go back on the medication, I am going to do this right and be gluten-free, LI ..and LOW SAL!! and pray it works. Wish me luck! :D


Edited by Blaze422, 11 December 2013 - 10:50 AM.

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#12 squirmingitch

 
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Posted 11 December 2013 - 12:31 PM

Going low sal may help or it may not. I thought it was the ticket for me but in actuality it wasn't. The rash was just doing it's thing, waxing & waning which is typical for the rash; it just happened to be coincidence that when I first went low sal, the rash was going into a waning period.

But we are all different & maybe low sal will help you. I hope it does! here's to luck. Cheers!


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#13 pricklypear1971

 
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Posted 11 December 2013 - 01:48 PM

Ditto what Squirmy said. And when I first started reading about dh, I read about a man who was on it for over a year and had breakouts regularly, even with gluten-free, LI, etc. Sometimes dh is a tough nut to crack.

My experience was that iodine had a particular frenzying effect, as did anything that "set me off" - some sals, some histamines....what I would call extreme foods like gluten-free chips saturated in msg derivatives. In time, things calmed down. My triggers now are autoimmune or immune related - a flu virus, a tweak in my thyroid meds gone wrong...

Everyone is different.

I honestly think the understanding of dh is minuscule. I think they'll find (of they ever bother to research) that there's a secondary autoimmune reaction going on aside from Celiac/gluten. So, my advice is that it may not be all food...that it may be autoimmune - that your autoimmune status could also be flaring the dh. My thyroid was at its worst when my dh was at its worst. My dh flares when my immune system is unsettled. Think about it.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#14 squirmingitch

 
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Posted 11 December 2013 - 04:43 PM

Ditto what Squirmy said. And when I first started reading about dh, I read about a man who was on it for over a year and had breakouts regularly, even with gluten-free, LI, etc. Sometimes dh is a tough nut to crack.

My experience was that iodine had a particular frenzying effect, as did anything that "set me off" - some sals, some histamines....what I would call extreme foods like gluten-free chips saturated in msg derivatives. In time, things calmed down. My triggers now are autoimmune or immune related - a flu virus, a tweak in my thyroid meds gone wrong...

Everyone is different.

I honestly think the understanding of dh is minuscule. I think they'll find (of they ever bother to research) that there's a secondary autoimmune reaction going on aside from Celiac/gluten. So, my advice is that it may not be all food...that it may be autoimmune - that your autoimmune status could also be flaring the dh. My thyroid was at its worst when my dh was at its worst. My dh flares when my immune system is unsettled. Think about it.

 

I agree with everything Prickly said. Well, right here, you can read about a woman who was strict gluten-free, low iodine for 2 full years & I still have dh. AND I was low sal for about 8 months. I continue to have dh that is always present somewhere on my body. BUT, it has gotten better & better & better. I now go hours & hours w/o a single itch. I still get blisters as well as other presentations of dh but now, once in a while, I get some blisters that never itch. I sleep many nights all the way through w/o being woken by that insane itch. At present, I have no places on my hands, arms, thighs, butt, back, clavicle, face, neck or scalp. This is HUGE for me!!!!!! A year ago I could not have said this. In March of this year I could not have said this. The dh places have become less intense & resolve faster & even the itching has lessened in intensity. There are periods of time when the only places on my body are from my knees down. Now, when I go to wash the sheets, there is usually only 1 or 2 spots (if that) of blood on them whereas there was a time when it took me a full half hour to pre-treat the sheets.

 

I especially agree with Prickly's last paragraph there. I have also noticed a correlation to autoimmune flares. I agree too that there is something else going on here autoimmune wise. Maybe it's just the leftovers of celiac still needing healing --- I can't say for sure -- I can only go with my gut (pun) instinct. I get far milder & much less frequent bone/joint flares/pain & swelling these days but when it does happen; I notice that my dh flares along with it & when it recedes, so does the dh flare. There is something going on in tandem...something. 


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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#15 Blaze422

 
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Posted 11 December 2013 - 05:18 PM

Thanks to you both. I am grasping at straws at this point. Prior to dapsone I was taking 1/2 a Advil pm ( high sal..LOL) every 4 hours or so to help reduce the itch during work, no drowsiness but still not a good idea.
Not to belabor the point, but I drink 2 cups or coffee, 2-3 glasses wine every day. My wife wanted me to add MSM to my regimine but it's so bitter I would mix it with OJ,,,, this week being off dapsone, I made chili and a lamb dish heavily involving tomatoes.

I went to the liquor store and bought gin. Grocery store and bought decaf coffee. Lots of low sal items.
While preparing dinner , I'm feeling pretty itchy just above my groin, and checking it out in the bathroom mirror I'm now seeing a new rash area. arggggggggg!

I guess the main issue is that I don't want to concede and have a life with a diagnosis of DH , and although I didn't have side effects I don't want to go back to dapsone. Being low SAL can only help, but I am still trying to determine whether I have DH
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