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Pepcid And Thiamcinolone


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#1 Doorknocker

 
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Posted 13 August 2014 - 03:19 PM

Hey all -

 

I was newly diagnosed in April, and I went completely gluten free a few days later (with some mistakes at first, but I am learning a whole lot here!).  The rash that was used to confirm my blood panels is DH but I never received any treatment for it, despite that I have had it for 13 months now.  It is on my scalp.

 

Instead of getting better with this gluten free diet, it's getting worse.  It's spreading and spreading and feels like I have 1000 fire ants all biting me at the same time.  I tried everything, even apple cider vinegar, but no relief.

 

This morning I insisted on seeing the endocrinologist that diagnosed me.  I told him if he didn't help I was going to scalp myself, that I simply couldn't take it anymore.  He looked it over and sat and thought about it for a while.

Then he told me to get 20mg Pepcid and to take it twice a day.  He explained it was a level two histamine and should calm the irritation.  He also prescribed Thiamcinolone .1% lotion cream and told me to use that twice a day as well.  Has anyone ever heard of this, and did it provide relief?  There's nothing wrong with my stomach.  I did do a search on here but didn't see this discussed.

 

 


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#2 beth01

 
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Posted 13 August 2014 - 05:06 PM

I haven't had DH, but I did have a severe allergic reaction once where my body wouldn't settle down at all.  Every time I came into contact with allergens ( environmental), I went into anaphylaxis and they gave me Pepcid to take. I did have relief with the Pepcid, but it took a few days.  Hope that helps.


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Diagnosed April 7th 2014

#3 squirmingitch

 
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Posted 13 August 2014 - 06:28 PM

Doorknocker, you have a good doctor there. He's using his noggin. The Pepcid is not going to hurt you & it could help & possibly help a lot. You'll only know by trying it. The cream is a corticosteroid which can help. The thing is with the steroids.... they can come back & bite you when withdrawn. It's like a backlash with dh. 

 

I'm sorry you're having such a rough time of it. The rash can hang on for years -- I know you don't want to hear that --- after going gluten-free. The antibodies are under the skin & it takes time for them to go away. Some of us get lucky & it is just months; some of us are not so lucky & it takes years. They can get worse after going gluten-free -- mine did. Because the antibodies are there under the skin, they can & do kick off any old time they feel like it.

 

There is a drug called Dapsone that is used to quell the rash until you have enough time under your belt. If you decide you might want to go that route, please do your research diligently. Dapsone is tricky & requires constant monitoring. Some have used it successfully & many who have tried it had to quit b/c of side effects. Dapsone itself can cause an itchy rash. Dapsone is in the sulfa class so if you are allergic to sulfa drugs then you won't be able to take 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.

 


#4 Doorknocker

 
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Posted 13 August 2014 - 06:50 PM

Doorknocker, you have a good doctor there. He's using his noggin. The Pepcid is not going to hurt you & it could help & possibly help a lot. You'll only know by trying it. The cream is a corticosteroid which can help. The thing is with the steroids.... they can come back & bite you when withdrawn. It's like a backlash with dh. 

 

I'm sorry you're having such a rough time of it. The rash can hang on for years -- I know you don't want to hear that --- after going gluten-free. The antibodies are under the skin & it takes time for them to go away. Some of us get lucky & it is just months; some of us are not so lucky & it takes years. They can get worse after going gluten-free -- mine did. Because the antibodies are there under the skin, they can & do kick off any old time they feel like it.

 

There is a drug called Dapsone that is used to quell the rash until you have enough time under your belt. If you decide you might want to go that route, please do your research diligently. Dapsone is tricky & requires constant monitoring. Some have used it successfully & many who have tried it had to quit b/c of side effects. Dapsone itself can cause an itchy rash. Dapsone is in the sulfa class so if you are allergic to sulfa drugs then you won't be able to take it.

That explains why he sat there for some time.  I am allergic to sulfa.  And latex and stainless steel and most sutures and almost all adhesives.  And stinging flying insects.  I mentioned to him that I had read about a drug that might help that starts with a D and he sat down and at the computer (where my allergies are clearly stated) and looked quite upset.  I already feel a tiny bit better from the Pepcid.  The area on my scalp is a little larger than my palm.  I haven't had my hair cut in at least 13 months because the thought of someone drawing a comb through my hair makes me want to yank it out by the roots, and my hair is quite curly.  I can sort of rest my palm on my head now.  It went from a 15 out of 10 to a 12 out of ten.  Progress!  I just now applied the steroid stuff and I am just happy it didn't burn.  I foresee new hats in my future if I have to apply this twice a day.  Luckily I have options at work and only need to be there once a week.  While I would certainly go with the greasy look if it got rid of this misery, my fellow coworkers might get weird about it.

 

Thank you so much, squirmingitch, for the encouragement!  I went to doctor after doctor, telling each the same thing.  I even went to the Cleveland Clinic and they didn't put it together.  All I got was a bunch of recommendations to see five MORE doctors.  My vitamin D was an 8, I had other stuff messed up, he dismissed the rash.  It was a routine check (I have hypothyroid) with my endocrinologist, when he was reviewing the tests that the Cleveland doctor had run, that prompted him to run the celiac panel and do whatever he had done to my head.  I had a lot of active blisters at the time.


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#5 Doorknocker

 
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Posted 13 August 2014 - 06:55 PM

I haven't had DH, but I did have a severe allergic reaction once where my body wouldn't settle down at all.  Every time I came into contact with allergens ( environmental), I went into anaphylaxis and they gave me Pepcid to take. I did have relief with the Pepcid, but it took a few days.  Hope that helps.

Yikes!  Anaphylaxis is BAD.  I carry Epi-pens due to other allergies, but I certainly don't want to use any of them.  My endocrinologist did tell me that if things don't settle for me soon, I'd need to go on the elimination type diet.  He said (due to the large swollen knots behind my ears) that I might have an autoimmune firestorm going on due to extreme irritation (I was sick for a LONG time) and that I might just need to let my body relax and that any number of things could be irritating me at this point.  I had minute relief within a few hours of the pepcid.  I'm stiff ready to scratch my scalp off, but not quite as ugly as it could be.


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#6 beth01

 
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Posted 13 August 2014 - 07:14 PM

I was doing allergy shots for all my environmental allergies when I had a reaction that sent me into full blown anaphylaxis a few times and then after that I was hypersensitive.  I couldn't go outside for a few weeks without having a reaction.  Once my body settled down, so did my allergies.  I was a 4+ on almost everything I was skin tested for and now most of that stuff doesn't bother me nearly as much as it did before.  I can even mow the lawn without being miserable for weeks and I have two cats which I had to get rid of mine 11 years ago because I couldn't be around them.  Sometimes I wonder if our bodies are just hypersensitive because of celiac.

 

I hope you get some relief and things start turning around for you being gluten free.  I was also diagnosed in April too ( the 7th) and it's a slow road after 37 years of illness but it's getting better day in and day out. 


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Diagnosed April 7th 2014

#7 squirmingitch

 
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Posted 14 August 2014 - 05:44 AM

When you said you were ready to scalp yourself, it really resonated with me. I once told a doc the same thing. I told him I was ready to take a fillet knife to my skin & peel it all off as that could not be any more painful than what I was going through. My dh has presented literally everywhere on my body so I know how your scalp feels. Before I forget, don't be surprised if somewhere down the line, the dh shows up in places you've never had it before. It is likely under your skin everywhere. 

If it is not terribly raw on your scalp, try hot epsom salts soak. Hard to do on your head I know. Maybe you can use a cloth soaked in it. At some point along the line, I found great relief from doing hot epsom salts soaks in the tub but there were times when i would never have been able to do that as the lesions were so raw. If you haven't seen it -- look for the thread on this dh forum titled "help for the itching, stinging, burning pain of dh". It's weird but both my hubs & I found that what works today may not work next week or next month so you have to keep mixing it up or at least trying even if that thing didn't work a month ago.

There is an option other than Dapsone but it's about 5th down the line of dh treatments. It is tetracycline & nicotinamide (a form of Vit B3. I did not go that route simply b/c besides being allergic to sulfa drugs, I will die if I have penicillin so the only antibiotic left to me are the in the terramycin class. Since we celiacs have a tendency to develop allergies, I did not want to risk developing an allergy to the one antibiotic I can take. It may be needed to save my life one day. Here are some links about the tetracycline treatment.

http://www.ncbi.nlm....pubmed/10844495

http://www.ncbi.nlm..../pubmed/8445075

http://www.dermnetnz...cotinamide.html

http://onlinelibrary...0615.x/abstract

 

In this link, just scroll down to "management"

http://www.medicine....ricq_Nov_12.pdf

I would draw your attention in the above link to how NSAID's affect us. It's true, so if you have to use anything, use Tylenol but not Advil, Nuprin, or any of those others.

 

It's IMPERATIVE with dh that you not get the tiniest amount of gluten. My advice is DO NOT ever risk eating out unless it's @ a totally gluten-free restaurant. It's just not worth the risk.

 

One other thing I will mention & I will just set this up & then copy &paste so you can read it. Even though this person had a different malady (not celiac disease) I think this may very well work to help those of us with dh. You may want to ask your doc about trying this. You're half way there with the Pepcid. This is a friend of mine who was telling me about what she went through & how she finally was able to manage her malady. Okay, starting the copy/paste:

 

 I have had 'pressure urticaria' since I was 40 yrs old----which drove me to John's Hopkins Hospital in Baltimore where I found an allergist who finally figured out what was wrong with me. He gave me a combination of H1 & H2 (histamine) pills that stopped all that itching that caused hives to form anywhere on my body including inside my mouth. My immune system was attacking me. I cannot wear any clothes that are too tight against my skin. It is an auto-immune disease. The pills work well, as I haven't had an outbreak in years. However, I will also have to continue to take these pills for the rest of my life. I was absolutely miserable when I had those hives. It took me 7 yrs to find a doctor who finally figured out how to treat my situation. So I can absolutely commiserate with you and the breakouts you are experiencing. Stress doesn't help either. So be kind to yourself.

*********************************************************************************************************************************************************

 

(((((((((((((((((HUGS))))))))))))))))))))))))))))) I know your suffering, I really do. Hang in there kiddo. If you've done 13 months, you can do the rest. I SWEAR it DOES get better, I swear it. You'll go through hell before you see the light at the end of the tunnel but one day you will walk into that light. I know. Been there, done that. 


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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.

 


#8 squirmingitch

 
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Posted 14 August 2014 - 08:56 AM

I forgot to say that if you haven't tried it yet, try limiting your iodine intake. See thyca.org for a low iodine diet (of course, leave off the gluten foods). Iodine is like throwing gasoline on a fire for many of us with dh.


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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.

 


#9 Doorknocker

 
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Posted 14 August 2014 - 11:36 AM

My head IS pretty raw.  I've been known to wet a towel in cold water, wrap it around my head turban style, and wedge a sandwich bag of ice inside it for relief.  I might have to wait on the salts.

 

Up until I was 36 or so I wasn't allergic to anything other than sulfa.  Then, suddenly, I became allergic to everything.  I am a horror when it comes to surgery.  I am not sure if I can take tetracycline.  I had unexplained mrsa in late 2012 and was given six superantibiotics over seven week's time.  Since then I haven't needed any.  If this current therapy doesn't work, I'd be willing to try it if my doctor thinks it would help.  I am really not sure what happens if you have to take so many strong antibiotics so quickly. 

 

I cannot make my house completely gluten free.  My husband is on board, but I have several rescue animals and some need special food.  I prepare it away from where I prepare my own food and in their own special dishes, and I store it in plastic bags that can be tossed.

 

I took the Pepcid this morning and rubbed in the steroid lotion.  So far the itching is still there but not so intense.  I just wish I could SEE what's going on, but I can't get a good enough angle to see the crown of my head.  It feels like a astroid hit, with pits and mounds, but I might be imagining that.


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#10 squirmingitch

 
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Posted 14 August 2014 - 02:36 PM

I DO understand! I had it all over my scalp too & it drives you crazy not really being able to see. I like the towel turban hiding an ice pack!  :lol:  :lol:  :lol:


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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.

 


#11 Doorknocker

 
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Posted 14 August 2014 - 05:30 PM

I need to look up what foods have iodine.  We use sea salt here, but if it's in other foods, I'm uneducated.

 

I swear the towel turban is awesome.  I might have slept that way last week...


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#12 GF Lover

 
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Posted 14 August 2014 - 05:49 PM

I've done the towel turban for migraines.  I'll rig up anything if it has a chance of helping... :D   I've strapped on my sacroiliac belt and stuffed ice packs in that too.  Squirmy, I would think you know how to strap on ice anywhere... :lol:

 

Colleen


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#13 squirmingitch

 
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Posted 14 August 2014 - 06:32 PM

Coleen if the place we were renting at the time had a bath tub, I would have filled it with ice & sunk down to my neck in it! :lol:  :lol:  :lol:

Seriously though, the worst places on my scalp were from my temples & over my ears which was a real "B". That's right where a towel turban wraps so that wasn't possible for those & my glasses temples go there too. The only answer was to lay in bed on my side, take off the glasses & put an ice pack on the side that was up, then roll over & do the other side for a while, & back & forth, back & forth.

 

Doorknocker, here's the link for low iodine diet. Scroll down to where it says "Avoid These Foods & Additives".

http://thyca.org/pap.../lowiodinediet/

 

The dog in your avatar..... part Coonhound?


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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.

 


#14 Doorknocker

 
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Posted 15 August 2014 - 06:25 PM

Coleen if the place we were renting at the time had a bath tub, I would have filled it with ice & sunk down to my neck in it! :lol:  :lol:  :lol:

Seriously though, the worst places on my scalp were from my temples & over my ears which was a real "B". That's right where a towel turban wraps so that wasn't possible for those & my glasses temples go there too. The only answer was to lay in bed on my side, take off the glasses & put an ice pack on the side that was up, then roll over & do the other side for a while, & back & forth, back & forth.

 

Doorknocker, here's the link for low iodine diet. Scroll down to where it says "Avoid These Foods & Additives".

http://thyca.org/pap.../lowiodinediet/

 

The dog in your avatar..... part Coonhound?

 

Nope.  The puppy is full blooded rottie, German style.  That's my husband's favorite dog, so that's what we have.  He's a super sweetheart.  He's a black and rust, and our ten year old girl is black and tan.  She's having hip issues really bad.

 

I just wanted to report that the Pepcid/steroid mix is somewhat working.  My hair is a greasy mess at the crown, but I don't feel like I have 1000 fire ants biting me all at the same time.  It's still itchy, my god it's itchy, but I don't want to scalp myself.  The thought is still there, but the urge to go find the sharpest kitchen knife is not.  My rash mirrors itself, and today I did feel the burning that means a new blister, but I didn't feel the corresponding one on the left side.  I am not sure what that means.I hope it means it's slowing down.  Right now, I am just so happy that the furious itching and burning has lessened to the point where I can function. 


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#15 kareng

 
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Posted 15 August 2014 - 06:35 PM

Nope.  The puppy is full blooded rottie, German style.  That's my husband's favorite dog, so that's what we have.  He's a super sweetheart.  He's a black and rust, and our ten year old girl is black and tan.  She's having hip issues really bad.
 
I just wanted to report that the Pepcid/steroid mix is somewhat working.  My hair is a greasy mess at the crown, but I don't feel like I have 1000 fire ants biting me all at the same time.  It's still itchy, my god it's itchy, but I don't want to scalp myself.  The thought is still there, but the urge to go find the sharpest kitchen knife is not.  My rash mirrors itself, and today I did feel the burning that means a new blister, but I didn't feel the corresponding one on the left side.  I am not sure what that means.I hope it means it's slowing down.  Right now, I am just so happy that the furious itching and burning has lessened to the point where I can function.


I really have nothing to add to the thread. But your little Rottie is adorable! A well bred Rottie is a lovely sweet big dog!
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