Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Another Newbie With Questions And 2 Glasses Of Wine
0

34 posts in this topic

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
0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.
1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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
0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Ahhhhhhh, the Advil will get you & not just b/c it's sals. You might try Claritin or Benadryl or any antihistamine (gluten-free of course) & see if it helps with your itch.

 

The bottom line is that dh can take a long time to get to the point where you know you're getting better. Like baby steps in super slow motion. You never know when you might start getting side effects from Dapsone if you go back to it & 1 of the side effects is an ITCHY RASH.

 

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

0

Share this post


Link to post
Share on other sites

Last question....for now..LOL...when treating my rash as eczema ....i was told about the critical need to use lots of moisturizers .

I was wondering if that is also true for DH . I almost feel that some of the bumps would go away if they had a chance to dry out.

0

Share this post


Link to post
Share on other sites

Last question....for now..LOL...when treating my rash as eczema ....i was told about the critical need to use lots of moisturizers .

I was wondering if that is also true for DH . I almost feel that some of the bumps would go away if they had a chance to dry out.

I found I needed to keep mine well moisturized. If they dried out, they'd crack and bleed. That said, my rash created a blanket effect...and individual sores may vary.

I used Vanicream and Vaseline. I also packed clean washcloths under my arms at night during the weeping hours (my blisters would swell and pop nightly), then pack ice packs on them after the weeping stopped.

I remember vodka and tequila helping, too. In a glass, in my hand, down the gullet. Slow breathing and meditation worked, mostly after the vodka.

0

Share this post


Link to post
Share on other sites

I have found that for me, it's been a case of be like a sapling & bend with the wind. At times it has been imperative to moisturize like crazy & then I get to points where moisturizing seems to make it worse --- bring up blisters rather than just bumps --- so I do what seems to work best at different stages of the game. For a long time it would have been insane for me to soak in a hot tub of Epsom Salts but I got to a point where that was about the only thing that did good. So I say, be willing to go with the flow.

0

Share this post


Link to post
Share on other sites

I almost feel embarrassed complaining about my rashes or itchiness when I read testimonials like the 2 of you.  I'm inferring from your answers that moisturizing or not isn't a factor in the healing?

 

And here I go on another confession:

My wife is a student of alternative medicine and should have earned her PhD if time on the internet counted towards the title. She wants to heal my gut. 

Probiotics

MSM

Black Seed Oil

Apple Cider Vinegar

Barley's Greens

Zinc

Vitamin D3 and K

Coconut oil for cooking and moisturizing

Bleach baths

 

I see that the oils are High Sal and Apple cider vinegar is High Sulfite.   I haven't read every page on this forum, but have posters discussed the above?  Do you have an opinion on alternate therapy and healing the gut?

0

Share this post


Link to post
Share on other sites

I almost feel embarrassed complaining about my rashes or itchiness when I read testimonials like the 2 of you.  I'm inferring from your answers that moisturizing or not isn't a factor in the healing?

 

And here I go on another confession:

My wife is a student of alternative medicine and should have earned her PhD if time on the internet counted towards the title. She wants to heal my gut. 

Probiotics

MSM

Black Seed Oil

Apple Cider Vinegar

Barley's Greens

Zinc

Vitamin D3 and K

Coconut oil for cooking and moisturizing

Bleach baths

 

I see that the oils are High Sal and Apple cider vinegar is High Sulfite.   I haven't read every page on this forum, but have posters discussed the above?  Do you have an opinion on alternate therapy and healing the gut?

- Probiotics are good. What kind are you taking?

- MSM - I would suggest drinking bone broth instead. It has MSM in it, in addition to a whole bunch of other stuff - minerals, collagen, etc. It has the added benefit of being food. I firmly believe that anyone trying to heal their gut should be drinking bone broth daily. Use marrow bones and/or chicken feet so you get lots of gelatin.

- I am not familiar with black seed oil, though I have used the seeds (Nigella) in cooking. Looks like it might have some antihistamine properties. Also looks like an immune booster - I am not sure if that is a good thing if we have AutoImmune disorders. Maybe someone else knows?

- ACV is general good stuff but possibly not in this case. I have recently noticed histamines may be an issue for my rash and so I cut out vinegar for a while. You may just have to experiment

- Barley Green supplement is made from barley grass. It says that it is gluten free. I probably wouldn't take it though. I prefer to just eat tons of veggies and fruits.

- I've been reading that zinc is important for skin. I think it's a good thing to be taking. What's you dosage?

- Vitamins D3 and K are essential. Again, what's your dosage?

- Coconut oil is awesome. I eat a few tablespoons each day. It is an excellent moisturizer!

- Bleach baths. Eeek! But that's me. I prefer epsom baths. I also grease myself up with olive oil before stepping into the bath so I don't get too dried out. I only started doing this in the last month or two. Before that baths were too uncomfortable (when I had weeping blisters and the rash was really hot and angry)

 

Also, are you sure that all your supplements are high quality and gluten free? (Sorry if you answered this already)

 

Anyway, these are just my opinions and observations. I highly recommend keep a daily diary that includes food intake, rash notes and other physical symptoms, activity log and mood/sleep notes. It seem like a lot of work but you get used to it. It's been an invaluable tool for me. And squirmy is right - it's a good idea to be flexible and willing to experiment and observe. There is so little that is really known about DH and everyone has slightly different experiences it seems.

 

Here's what has seemed beneficial for me:

- Sleep. Yep, this is #1! It has a dramatic effect on my rash. The nights I sleep well, I wake up to a calmer rash. I take naps as often as I need and I enacted a good sleep hygiene routine (no computer after 8pm, low lights in the evenings, no stimulating activities, hot epsom bath before bed)

- Stress reduction. Very important. My rash flares up after even small amounts of stress. Meditation has helped me a lot. I have also jsut had to slow my life way down for the time being. No overbooking or overpromising. Laughter daily. Gentle exercise as often as possible.

- Strictly whole foods diet. Fresh meat, fresh leafy veggies, fresh fruits, safe starches like sweet potatoes, tapioca and white rice, some nuts, but limited amounts. I drink bone broth a few times a week (would like to do more). I have eliminated refined sugar. I use honey and maple syrup occasionally

- I've recently been playing around with a low histamine diet, just to see how it affects the rash. The jury is still out but it looks promising. (that's why I've been reducing my intakes of nuts)

 

I wish you good luck and comfort!

0

Share this post


Link to post
Share on other sites

Frankly I wouldn't touch barley grass with a 90 foot pole! I don't care what it says. Just how careful are they when they harvest it? Did any happen to go to seed or the beginnings of seed? Where was it grown? Somewhere that it had gone to seed in previous years or worse yet -- an old wheat field? What equipment is it harvested on? The same equipment as wheat or barley that has gone to seed? Nahhhh, I'll pass on that thank you very much. I think like Abby says ---- lots of fresh leafy greens.

 

Culturelle makes a gluten-free & dairy free capsule probiotic. Very good. If you're doing dairy then Greek yogurt.

Like Abbs says --- make sure all the supplements are sure fire gluten-free.

As to ACV, I'm wondering if the sulfites in it are affecting the rash. Reason I say that is b/c it seems when I drink wine (sulfites) my dh flares more. Not an ironclad conclusion yet but enough suspicion there for me to question it. I'll have to test the wine theory 3 or 4 more times before I'm sure. Today I don't feel like testing it. Might not tomorrow either. LOL! And then, we are all different so what happens to me may not happen to the next person. And I understand there are sulfite free wines out there if one really desires to drink wine.

Bleach baths? That's up to you. I'm with Abbs on that one --- Eeeek! But whatever floats your boat ya know.

There are people on this site who do alternative therapy. Lots of them. You ought to post a thread in the post dx forum asking about it.

Don't forget Vit C is good for your skin too & it's something you can't OD on so go nuts if you've a mind to.

 

Okay, now to your first question as to if moisturizing is a factor in the healing. NO. That's my short answer. This is really hard to wrap your head around & I think 1 reason is b/c we humans are so accoustomed to being able to take pills or treatments for just about everything that ails us. We are getting a cold, we take Vit C & zinc, we get allergies, we take antihistamines, we get aches, we use Ben Gay, we get flu & pneumonia vaccines & so on even with prescription drugs. We have developed a certain unconscious arrogance that we can control things, or have a certain amount of control over things. We simply find it impossible to accept that we have no control over this rash other than a strict gluten-free diet but we have zero control over the hour to hour, day to day, month to month presentation of this rash. We persist in thinking we can do something, anything, to heal it & make it go away. But the flat out truth is that this rash is beyond our control. We can stay off gluten & even go low iodine but that's where our control over this stuff ends. For well over a year, I thought I could control it in some way. My hubs still reverts back to thinking he can heal it somehow. If I hear him say these things one more time, I think I will scream!: "Maybe it needs the Caladryl & it will dry it up & then it will heal." or "Maybe it is too dry now & needs the vaseline to moisturize it. I may have burned it too much with the Caladryl & now need to moisturize & that will heal it". And there are many more he says. He knows he can't heal it but still has times when he can't accept the fact that nothing he does is going to heal the danged stuff until it's good & ready to heal! One thing is fact --- when a lesion or lesions decide to heal; they heal up so fast it can near make your head spin. It can look like total hell for weeks & then in 3 days your skin is amazingly healed. Jaw droppingly fast! This rash has a mind of it's own & nothing we do will stop it from going through it's cycle. It will break out & I guarantee it is not going to heal until it's damned good & ready to decide to heal no matter what we apply to it topically or orally. As long as we persist in trying to control it, we will make it worse by stressing about it. The sooner we accept the fact that there isn't a thing we can do; the lower our stress level goes & the better off we are. You can make yourself in-freakin-sane trying to figure out how to control this stuff & all you do is make yourself nuts.

The only thing we can do is whatever it is that makes it feel better at whatever given point in time or cycle of the rash. 

1

Share this post


Link to post
Share on other sites

Y'all are awesome for contributing to my understanding...Thanks!,,,

0

Share this post


Link to post
Share on other sites

There's a lot to learn & understand. I am just thankful that there were those who were willing to help me when I was a newbie. And I so often think about just how daunting & difficult it was to learn any of this pre PC days. I can't even fathom!

 

We are happy to help anytime.

0

Share this post


Link to post
Share on other sites

Squirmy is right, you can't rush healing. But you can screw it up - stay out of the bleach.

Look, I know how desperate and adrift you feel. We all do. We've been there. But the best advice is to keep it simple.

I ignored sage advice and tried too many things at once...and that was bad because a body under stress can only handle so much - even a good thing.

Eat whole, simple foods. Concentrate on deglutening your house and building a repertoire of safe foods and brands you like and tolerate. Keep a food diary. Check every supplement and body care and pet item for gluten. Clean the kitchen - get the gluten out if the kitchen drawers, pans, utensils. Clean the dishwasher.

If you haven't had vitamin tests to discover deficiencies, do those. If you take vitamins/supplements I suggest liquids and powders dissolved in liquids. Celiacs have crappy absorption in the beginning. Probiotics help most, as do digestive enzymes at meals. Discover the common sense, tried and tested that works for you. Then move to the next phase.

If you want a healing diet look into GAPS or somesuch. For many, a pieced together healing diet (best ideas in food form we can tolerate) from several healing diets work.

There's no one way to do this. I'm sorry, but it's true. We've all had very unique journeys.

2

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0