Dh Please Help

[RCV]

So, I was diagnosed with Celiac disease along with dermatitis herpetiformis (DH) at age 9. Over the last 10 years or so I have been gluten-free, but would occasionally have mild break outs due to incidental/small exposure, but the breakouts were mostly confined and occurred in the same areas. Now I am 20 and have been on an extremely strict gluten free for 2-3 years. Starting about 7 weeks ago the rash came with more severity than it has since I was initially diagnosed over 10 years ago. Like I said I have been gluten-free for the majority of my life, and am not sure what I could have eaten to cause the flare up. The sores are coming up in spots that they have never shown up before, specifically the lower half of my back, both legs, arms, and buttox. Some areas have healed, but new clusters continue to appear. As of 3 days ago I have been using aczone gel (dapsone), triamcinolone cream to help the sores, I was also prescribed the antibiotic doryx. I am aware high Iodine foods can cause the DH to become worse.

 

 I believe that this breakout is being fueled by some "Gluten Free" pizzia sandwiches, with the first ingredient of Millet Flour, They were labelled gluten free, and this is really the only new item I have introduced lately. I have not had any breakouts within the last year and am really worried about this particular break out as I know what has already shown up will take months to heal. I have never had the rash continue to appear for more than a month and it has been 7 weeks since this began and I can feel new spots trying to emerge. The prescriptions have provided relief over the last 3 days and seem to be inhibiting the rash to a degree. I am really hoping they are effective in controlling this breakout. So I am looking for opinions:

 

Any other ingredients other than gluten (I am currently avoiding oats) that Celiacs/DH have had reactions to? 

Why is the rash appearing in places it never has before and why so severely ?

Any other suggestions to help me get my skin back to normal? 

 

 

[squirmingitch]

First:

 

((((((((RCV)))))))))

 

What country are you in? What is the name of these gluten-free pizza sandwiches? Did you read the ingredients? I know, I'm sure you did but are they certified gluten-free or what? Millet is fine but where do these sandwiches come from? Who makes them? How long had you been eating them?  A few weeks or a few months or what?

 

I'm so sorry but you know as well as I do that there is nothing we can do to speed up the resolution of the rash. Not unless you want to go oral Dapsone until the antibodies get out of your skin.

 

I, like you, suspect the pizza sandwiches but perhaps it's time to go back over your diet with a fine tooth comb & make sure something hasn't slipped in there somewhere. I haven't been gluten-free as long as you have but just made a mistake (not with gluten thankfully) but with carageenan (loaded with iodine) in Lactaid milk. Stuff can slip up on us.

 

As to the severity & longevity of this latest outbreak I'm going to say it's either or both of 2 things. 

1) You've been getting low amounts of cc for some time unawares & now it's all coming to light.

2) We become more sensitive to gluten the longer we are gluten free & tend to react more strongly to exposure.

 

I wish I could be of more help. If you answer the questions, maybe it will help us to get a clearer picture & brainstorm this to figure it out. Meanwhile I send hugs & my most sincere wishes for a swift end to this outbreak. You know the drill, you just have to wait it out & waiting it out sucks. 

[Lobstah]

Having been recently diagnosed, and having done tons of research now on DH, your last statement rings true.

 

On one hand, it's good to finally know the cause of this.

On the other hand, it's tough knowing that there's really nothing we can do (other than maybe Dapsone) other than just wait it out.

I have several creams...but now it's clear that they do nothing to treat the rash itself, they only help to reduce the itching.  That's ok, but it's not what we're normally used to when it comes to treating something, which is more along the lines of  "Here...take this, and it will make it go away".

 

Jim

[squirmingitch]

That's it Jim, just wait it out. The very best we can do is help the itch from itching so badly & even then we are pretty much hogtied. There is a thread on here "Help for the itching, stinging, burning pain of dh" you might be interested to read. You may find a thing or 2 that helps you. My hubs & I have found that not one thing works all the time & one has to switch up whatever you're doing & try something else when one thing becomes ineffective.

[Lobstah]

Agreed.  I'm going to try the benzocaine suggestion.  Looked for it the last time I was in Walgreens and was surprised I couldn't find it.  They had 5-6 different "itch relief" creams, but nothing with benzocaine in them.

When I got home, I googled it, and figured out why.

 

I was in the wrong section.  The benzocaine ointments are all in the hemaroid section...that made me chuckle.

 

All that aside, I'm amazed at the number of ointments that get prescribed for this "condition", none of which do anything at all to the rash, but rather are all aimed at reducing the itch until the rash goes away.  I currently have 5 different creams that have been given to me over the past 3yrs.

 

Any idea on how long it takes for a flare up to occur after ingesting gluten?

 

Jim

[squirmingitch]

No I don't thank goodness b/c I've been rabid to the max. not to get any cc at all. From what I've read other people reporting it can be immediate to a few hours to 1 day. I've never heard longer than 1 day before you know.

Benzocaine is in Orajel. This is what I used.

Open Original Shared Link

[Lobstah]

No I don't thank goodness b/c I've been rabid to the max. not to get any cc at all. From what I've read other people reporting it can be immediate to a few hours to 1 day. I've never heard longer than 1 day before you know.

Benzocaine is in Orajel. This is what I used.

Open Original Shared Link

I DO think it's funny that both Oragel and hemorrhoid cream have the same active ingredient

[squirmingitch]

I've been giggling about the hemorrhoid cream thing too since you mentioned it. it's only fitting as the rash is a pain in the butt.      

[Lobstah]

Well...it's been a month since my diagnosis.  Prior to that physical, I had greatly reduced wheat and sugar intake as part of my diet plan.  Of course, as we here all know, "reduced" is meaningless in terms of impacting DH.  When I had my physical and DH became a high probability, I immediately eliminated gluten.  Of course, there's a learning curve...so while the intent was immediate, I'm sure there was some CC going on due to my own lack of knowledge.

 

All that being said, my rash has definitely diminished.  At the time, the back of my head, around to up over my ears, was covered with blisters/scabs, and itched like the dickens.  I was putting cream on 4-6 times daily.  I also had a major patch at the top of my buttocks/bottom of lower back.

 

My scalp is all but healed, with just a few small bumps remaining.  I haven't used any cream to speak of in the past week.  Like wise with my lower back...that's healed as well.  I was waking up 3-4 times a night due to the "itchies"...that's gone now too.

 

I was maintaining a low-carb diet, and had dropped about 40lbs.  Every other weekend, I'd have a "cheat day"...which is almost required (almost) on a low-carb diet, as your metabolism can go into starvation mode where it does everything it can to stop dipping into your stored energy source, a.k.a. FAT.  By having a moderate cheat, it gets things going again.

Those cheat days were special...something to look forward to.  They might have included things like a pizza...REAL beer, as opposed to "lite" beer.  Stopping by Dunk's for a donut while out running errands on a Sat morning, or enjoying a really good dessert as part of going out to eat.

 

So...yeah, it's difficult driving by the Dunks and knowing I can never eat another donut there again.  There's a waterfront restaurant not far from where we live that's owned by an older Greek couple.  The wife makes THE best coconut cake I've ever eaten...gone.  My wife and I are both "foodies"...some say to the extreme  We both love to cook, and my wife is an excellent baker.  While we are doing a good job of working through the transitions at home, trying this recipe or that one...converting old fav's to gluten-free, there are daily reminders of what we can't do anymore.  Huge kudos to my wife, who has also gone gluten-free, though she hasn't been diagnosed with anything.  This would be MUCH more difficult without having my BFF/partner along for the ride

 

The upside is that it DOES make it easier to stick to a low-carb diet...well, except for those damned Whole Foods gluten-free Chocolate Cupcakes

 

And it's great to have a forum where all of us can vent, share, etc.  Very glad I found this place

 

Jim

[cyclinglady]

Glad you are feeling better!

[squirmingitch]

Yay for you Jim!!! And give your wife an extra special hug. Her going gluten free with you is the ultimate in support. It certainly takes a whole lot of stress off by not having to worry about cross contamination.

You're still in the mourning phase bemoaning all those foods you will never be able to have again but it will pass & I promise you won't miss them. It's hard for you to believe right now but you will forget what those things actually taste like. With both of you being foodies you will have it made. You two can experiment to your heart's content. 

[Lobstah]

Well...seems I may have spoken too soon, or at least, too optimistically.  Got hit with an outbreak on the back of my neck again, along with a few itchy spots on my collar bone and elbow.

Damn this stuff!

And I'm about 99% certain I didn't get bombed...especially since I had some dental work done on Wed, and I've been on a very restricted diet since then...mostly chicken soup, home made.

As for not missing/forgetting what they taste like...that's doubtful  I can still clearly remember the taste of fresh donuts, both plain and chocolate, coming right out of the fat, almost too hot to handle, in my grandmother's kitchen in Enfield, Me when I was about 5yrs old

 

And yes, I'm sure we'll both experiment...always have  But first we need to go through our old stand-bys and redo them to something suitable.  That's a pain, when you've built tons of selection/experience into exactly what goes into the favorite pie crust, for example.  It's like "We have to start over?...Wait...wha????"

 

But as things go...it's still a good problem to have.  This is "doable" with some sacrifices...so we'll get by, and be better off for it.

 

I used to say that wheat and sugar are probably the two worst things you can put in  your body, aside from maybe heroin and cocaine.

 

And I used to look at something like a donut and think "Well...it's not really good for me, but today can be a cheat day since I've been good for 3wks."

Then I went to "It's not that it's 'not good for me'...it's that it can KILL me..."

 

Now my thinking is that wheat is killing all of us, just some of us more quickly than others.

[Lobstah]

Ok...here's an update....

One thing that HAS changed in the past two days is taking Ibuprofin "Soft-gels"...

 

Inactive ingredients are listed as:

FC&C Blue #1

Gelatin

Pharmaceutical ink

polyethylene glycol

potassium hydroxide

sorbitan

sorbitol

 

These are generic Walgreens brand.

 

WTH do they need to put all of this crap in a simple pill.  We don't care what flippin' COLOR it is.

 

Looking everything up now.  Apparently straight Advil tablets are gluten-free, so will be switching to those immediately.

 

Dammit!

 

**edit**

I don't see anything online that jumps out...but I'll switch over to the Advil tablets which seem to be gluten-free and see what happens.

[squirmingitch]

A) Remember that dh can & DOES flare at any time EVEN when you're strict gluten free (or even not gluten free). That's the b%$@# of it. That's also why I am unbelievably rabid about not getting the tiniest amount of gluten. That allows me to be POSITIVE the flare is not from gluten. This is as much a mental battle as a physical one. Comfort comes in knowing 1000% positive that you haven't gotten glutened. On Dec. 1st I will be 3 years gluten free with ZERO cross contamination exposures & I STILL get "itchies" flares. A billion times better than I was & slowly getting fewer, less intense & further between but I still get them. Not everyone goes this long but some do. I hope you are one of the "short timers" but you need to understand you may not be. I am grateful that for about the last year & 1/2 I have slept through the night without having any itchies wake me up. I can wear clothes without going out of my mind with itchies & literally ripping them off the moment I walk through the door.

The antibodies have to get out from under your skin before you will be free of all itchies. It can take months or years.

 

Advil can aggravate the itch. I have finally in th elast year, been able to tolerate Advil. Tylenol is the only one that tends not to aggravate the itch. Be aware of that. If the Advil bothers you then go buy brand name Tylenol. It's gluten free. BTW, the Advil liquid gels are NOT gluten free. And you're right -- we don't care what flippin color it is! 

 

Okay, when you really need a junk food fix........ Kinnickinick Vanilla Glazed Donuts are really, really good IMHO.

Open Original Shared Link

 

And if you liked the brownies made from the recipe on the back of the Hershey's Cocoa can then you will like these:

Open Original Shared Link

Don't let the chocolate chips in them stop you from trying them. I thought that was off putting but tried them anyway. You never even know chocolate chips are in there. I promise! I think they may have put them in there to get the texture right.

 

My big lament was biscuits. I made my own biscuits since I was in my early teens. I couldn't forget biscuits. And I tried a billion gluten-free recipes. Sigh. They all sucked as far as I was concerned. These actually work for me & I am happy to have biscuits back again! They don't hold together terribly well but they are the best thing I've found resembling a biscuit (baking powder biscuits that is).

Open Original Shared Link

 

I have a feeling you 2 might just enjoy experimenting with this recipe. I found it delightful on boneless skinless chicken breasts. Have something delicate tasting with it like asparagus.

Open Original Shared Link

 

Bon Appetit!

[squirmingitch]

Oh BTW, I'm a southerner born & raised. Can you say fried chicken? Can you say fry it, fry it. fry it? LOL! Deep fried YUM! I tried many fried recipes & concoctions. It was all so simple but everything I read made it complicated. Sometimes it's better to go back to basics. The best thing I have found is corn starch. Good frying! It requires a little practice with the temperature setting but it's as near as gluten flour fried food as it gets. I have found it gets crispier if you whisk egg whites & dip whatever it is in the egg whites only then dredge in corn starch & fry. Do NOT drain on paper towels --- the food will get soggy. I drain on a paper plate tilting each piece against the rim so air gets underneath the pieces.

[Lobstah]

Well...turns out that PART of the itchy rash was a reaction to Amoxycillin....so now I get to add penicillin and all derivitives to the list of no-nos.  What the heck?

Seems like a whole lot of stuff breakin' in a short period of time.  Never had any problem with drug allergies at all before this.

[squirmingitch]

Awwwww, I'm sorry. I've always been allergic to penicillin -- it will flat out kill me in a heartbeat.

As celiacs, we tend to develop allergies to things. I was fine taking sulfa class drugs until about 8 or 10 years ago & then one day I wasn't fine taking them. 

[SMRI]

No I don't thank goodness b/c I've been rabid to the max. not to get any cc at all. From what I've read other people reporting it can be immediate to a few hours to 1 day. I've never heard longer than 1 day before you know.

Benzocaine is in Orajel. This is what I used.

Open Original Shared Link

 

That is good to know.  I'm going to try that on my rash and see if it helps.  I was looking for cortisone cream in the house when my rash appeared last week and I didn't have any....I do have some Orajel and oddly was thinking I should put that on there--mainly because I thought it would just numb the spot .  I've been known to put Burt Bee's on my rash on my hands (different from the new rash on my ankles) and that does give some relief as well.

[Lobstah]

The stuff I bought from Walgreens was actually for boils, but they all have the same active ingredient.

The pharmacist said that the boil cream was actually the best buy, giving the largest tube for the lowest price, and it's 20%, just like the Oragel and others.

 

A penny here, a penny there, pretty soon you've got a bottle of wine paid for

 

Jim

[Lobstah]

Thought I'd drop by and post an update...

It's been a bit over 2wks since the GI doc told me to go back on gluten up until the day of the endoscopy...so go back on gluten I did!...lol

I've had REAL beer, some donuts, last weekend I baked Anadama Bread , made popovers, and basically every other treat that I didn't get a chance to say goodbye to when I was diagnosed.

 

I've had just a few very minor patches...a little itch here, a single blister on my elbow, etc., but overall, nothing too severe yet.  My household all came down the the flu just before Thanksgiving, so yesterday I was just too sick to cook, and everyone else was too sick to eat anything anyway.  I think we're all on the upside of it now, so will do Thanksgiving either today or tomorrow...let the PIES begin!

 

It will be interesting to see the results of the endoscopy.  Over the past few years, I've gone on and off a low carb diet.  I've lost quite a bit of weight, but still have a ways to go.  Part of being successful on that is to have an "off" day about every 2wks, to keep your metabolism from slowing way down in an attempt to hang on to all of the fat it's stored up.  Low carb basically means no bread, rice, pasta, etc.  When I would have my "cheat" day, and would indulge in bread, or some other forbidden treat, I would get gut cramps...always associated it with the carbs, but now I'm not so sure.  Could be a reaction to the gluten, or the carbs.  No way to know for sure.  I also used to wake up at 3-4am with a POUNDING headache.  When I mentioned it to my former doctor, he said it was most likely sleep-apnea.  Had me to go a sleep study, wanted to put me on a Cpap machine, etc.  I elected to lose some weight instead, because I clearly needed to do that anyway.  So I lost about 45lbs, sticking to the low carb diet, and things got generally better.  So were the headaches apnea?...or gluten?...no way to know for sure.

 

I read an article yesterday posted on Yahoo News from a recent study by an italian health center regarding Celiac.  They said that Celiac had "changed" in the way it presents symptoms, and that the "classic" symptoms were no longer a valid set.  They said that only 17% of the population with celiac disease were actually diagnosed, and that symptoms included people with migraines and several other symptoms.  Hey medical industry!...welcome aboard!...it's about time!

 

So endo is this coming Thursday, which means the gluten-binge is coming to an end.  It's been fun, and I'm thankful that my rash hasn't come back with the verocity that I was afraid of, at least not yet.

 

Hope everyone had a great T-day!

 

Jim

[SMRI]

Have a chocolate glazed donut for me

[MJ-S]

From what I've read other people reporting it can be immediate to a few hours to 1 day. I've never heard longer than 1 day before you know.

 

My DH usually appears about 48 hours after exposure. According to the University of Chicago Celiac Disease Center, DH usually appears within a day or two, sometimes within hours, after gluten exposure:

 

Open Original Shared Link

[Lobstah]

Well, this weekend marked the end of my gluten-gluttony

 

My DH has come back, though still not at the levels it was at when I was first diagnosed.  Last night, sitting in the couch watching television, some place on my body would start itching about every 30 seconds.  My cheek, my scalp, my elbow, my back...just like old times

 

It's still somewhat mild, but it's definitely back, so I'm glad I don't have to keep going.  Hopefully it will start to diminish soon.

 

Now I'm waiting on the results from the endo to see how significant the reaction in my small intestine is.

 

Jim 

[squirmingitch]

Let us know Jim. 

[SFord54]

So, I was diagnosed with Celiac disease along with dermatitis herpetiformis (DH) at age 9. Over the last 10 years or so I have been gluten-free, but would occasionally have mild break outs due to incidental/small exposure, but the breakouts were mostly confined and occurred in the same areas. Now I am 20 and have been on an extremely strict gluten free for 2-3 years. Starting about 7 weeks ago the rash came with more severity than it has since I was initially diagnosed over 10 years ago. Like I said I have been gluten-free for the majority of my life, and am not sure what I could have eaten to cause the flare up. The sores are coming up in spots that they have never shown up before, specifically the lower half of my back, both legs, arms, and buttox. Some areas have healed, but new clusters continue to appear. As of 3 days ago I have been using aczone gel (dapsone), triamcinolone cream to help the sores, I was also prescribed the antibiotic doryx. I am aware high Iodine foods can cause the DH to become worse.

 

 I believe that this breakout is being fueled by some "Gluten Free" pizzia sandwiches, with the first ingredient of Millet Flour, They were labelled gluten free, and this is really the only new item I have introduced lately. I have not had any breakouts within the last year and am really worried about this particular break out as I know what has already shown up will take months to heal. I have never had the rash continue to appear for more than a month and it has been 7 weeks since this began and I can feel new spots trying to emerge. The prescriptions have provided relief over the last 3 days and seem to be inhibiting the rash to a degree. I am really hoping they are effective in controlling this breakout. So I am looking for opinions:

 

Any other ingredients other than gluten (I am currently avoiding oats) that Celiacs/DH have had reactions to? 

Why is the rash appearing in places it never has before and why so severely ?

Any other suggestions to help me get my skin back to normal? 

I have been suffering with DH for 2 years now. Suddenly, at age 60, I have been diagnosed with celiac disease and it has been quite an adjustment. Something you ingested has triggered it for sure. My most recent outbreak was from cough medicine (the Walmart Tussin which claims to be gluten free on the website but the bottle is not labeled as such). My outbreaks are always in the same places... but sometimes a new patch will show up where it never was before. I hear that dapsone (the pill form) is helpful to some but I broke out in a rash from it and was advised to stop it. I use betamethasone creme to help with the itching, but like me, you will have to wait it out. DH is a curse for sure