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Pepcid And Thiamcinolone


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#16 Doorknocker

 
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Posted 15 August 2014 - 06:47 PM

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!

 

Thank you!  That pic was a year ago; he's now a 110 pound lap dog, but he responds fantastic to his training.  We got a puppy because our house is tiny and we have three rescue parrots, and we have no way to close off their room.  We have to have a well trained dog so the parrots are never in danger.  Once we move, we are considering contacting rescue groups.

 

Back on topic, I'm getting ready to take a shower and wash the steroid stuff out and re-apply.  I take the coldest showers I can bear but that's really getting old!  I am hoping I can tolerate warmer water, but even though it's not quite so itchy, my scalp is pretty torn up still. 


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#17 squirmingitch

 
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Posted 15 August 2014 - 06:53 PM

Well, I am very glad to hear you are getting some kind of relief!!!! Doing a happy dance for you! And isn't it wonderful to be able to think of something other than the  insane itching &  burning 24/7?

As to the burning precluding a blister & not getting a match on the other side..... the match may be a day or 2 or 3 behind orrrrrrrrrr it might just not happen. I wish I could tell you it means something; of course, that something being that it's ramping down BUT I would be doing you a disservice if I said that. It could be ramping down or it could not be. I tell people over & over & over again that if you try to figure out a pattern to this stuff, you will make yourself flaming insane. Every time you think you have it figured out, it will come back & slap you in the face. Sometimes I think this stuff has a mind of it's own -- is an alien entity living inside our bodies torturing us. What I can tell you is to do your best not to try to figure it out & get broken hearted when it disappoints you for this leads to stress & stress (for me & others have reported the same) makes the rash worse. We know stress is not good for us in the first place. And I know that is not what you wanted to hear. Truly, I KNOW. I'm so sorry you are going through this. But you have proven your strength by getting this far. You WILL make it all the way. The road is rocky but YOU will survive. 

 

Now, as to the rottie..... I love the big lugs. I very fondly call all rotties "beasties". Big ol sweet beasties.


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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.

 


#18 Doorknocker

 
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Posted 15 August 2014 - 07:08 PM

Well, I am very glad to hear you are getting some kind of relief!!!! Doing a happy dance for you! And isn't it wonderful to be able to think of something other than the  insane itching &  burning 24/7?

As to the burning precluding a blister & not getting a match on the other side..... the match may be a day or 2 or 3 behind orrrrrrrrrr it might just not happen. I wish I could tell you it means something; of course, that something being that it's ramping down BUT I would be doing you a disservice if I said that. It could be ramping down or it could not be. I tell people over & over & over again that if you try to figure out a pattern to this stuff, you will make yourself flaming insane. Every time you think you have it figured out, it will come back & slap you in the face. Sometimes I think this stuff has a mind of it's own -- is an alien entity living inside our bodies torturing us. What I can tell you is to do your best not to try to figure it out & get broken hearted when it disappoints you for this leads to stress & stress (for me & others have reported the same) makes the rash worse. We know stress is not good for us in the first place. And I know that is not what you wanted to hear. Truly, I KNOW. I'm so sorry you are going through this. But you have proven your strength by getting this far. You WILL make it all the way. The road is rocky but YOU will survive. 

 

Now, as to the rottie..... I love the big lugs. I very fondly call all rotties "beasties". Big ol sweet beasties.

I'm not going to try to figure it out.  I am not going to try to figure it out.  Repeat.  I promise.  I said that because normally, a burning insanely itchy part on one side usually follows withing hours on the other.  And that was at 3pm today and I still haven't felt it. 

 

I try so hard not to be stressed.  It's just my husband and I and out menagerie of pets, and my job is super and one that I really like.  My husband is sweet and low key.  I try not to stress about anything because I did notice.  I noticed that if I got upset, my whole head would suddenly start flaming and NOTHING would calm it down.  I think I got stressed several weeks ago and that's what made it so horrible that I couldn't stand it.  Then I'd walk around downtown in the heat, and OMG I wanted to chop off my head! 

 

The part that makes me happy is that my doctor believed me.  He didn't think the rash looked so bad when my diagnosis was confirmed in April, and he didn't think it looked so bad on Wednesday when I went in and insisted he help me.  But he heard me, and he did what he could to help me.  That alone lowered my shoulders from my ears to at least my chin,   Doctors always stress me out, because I went forever to doctor after doctor and complained that something was very wrong, and no one took me seriously, or they referred me to yet some other specialist who knew nothing.  Just having someone who can help listen and work with me is the best thing to happen to me in years.  He's not taking new patients, or I'd blast his name everywhere I could.


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#19 Doorknocker

 
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Posted 15 August 2014 - 07:12 PM

Oh,and the puppy WILL be a beast.  He's not at all fully grown and he's 110 pounds.  We are guessing at least 130, probably 140.  He loves to run and hike and swim.  He was in the Ohio River last weekend, just swimming around and having a good old time, even after a good hike and playing with the niece and nephew.  He swam and swam, chasing after the balls the littles were throwing into the water for him.  I was a little worried, but my husband was prepared to jump in and grab him if he ran into trouble. 


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#20 CTMK3121

 
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Posted 19 August 2014 - 05:54 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.

I have read that it can take a year or more on a strict gluten free diet to see a decrease or cessation of DH symptoms.  I am new to this too, I'm sorry you are having such awful flare-ups.  :(  Aloe vera directly from the plant can be helpful.  I also use steroid creams and lidocaine cream.  I have not heard of using Thiamcinolone or Pepcid; if you do not see results from this treatment, maybe ask the doc for Dapsone or another antibiotic.  Good luck to you!  


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~MK~ :wub: 


#21 Doorknocker

 
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Posted 25 August 2014 - 05:07 PM

I don't think I can take Dapsone.  I am allergic to sulfur.  Isn't it sulfur based?


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#22 squirmingitch

 
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Posted 25 August 2014 - 07:16 PM

Yes, you are correct; Dapsone is in the sulfa class. 

 

How are you doing Doorknocker? Have you had any greater relief from being on the Pepcid longer now? 


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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.

 


#23 Doorknocker

 
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Posted 27 August 2014 - 11:07 AM

Yes, you are correct; Dapsone is in the sulfa class. 

 

How are you doing Doorknocker? Have you had any greater relief from being on the Pepcid longer now? 

 

I'm not noticing any healing, but I haven't had any new blister things since last week, The constant raging fire has died down a bit and tends to only get riled up if I am hot or I exert myself, so that's good.

 

However, I think I am getting cross contaminated somehow.  Either that, or I am developing some other intolerance.  For a few months the bloated belly went down and I had more energy.  Then I got seriously glutened (about ten days ago) and while most of those symptoms have gone away, I am back to looking nine months pregnant, and I am vomiting daily, sometimes several times a day.  I think I am going to have to do the elimination diet.  At least that should be good for healing my rash.


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#24 squirmingitch

 
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Posted 27 August 2014 - 03:02 PM

Re-read the Newbie 101 again & go through your kitchen & make sure everything is in order. Also, does your hubs eat gluten or drink beer ever? You actually can get glutened by kissing. He has to brush his teeth REALLY well before you kiss. With the rash, every time you get glutened or even the slightest cross contamination, it fires back up all those antibodies & they get deposited under your skin again. You don't need any more than you have. You're trying to wait out the ones already existing. It's really imperative not to add more. 

The gut issues can be tricky in the beginning too. It can take a while for your body to settle down. For the 1st 6 months to a year it can be a rocky road with ups & downs. It does sound like you got a good glutening though. Celiacs who go gluten free & then get glutened almost always have stronger reactions if they get glutened. That's why so many can not complete a gluten challenge. Eat whole foods only for at least 3 months, preferably 6 months. This also means no processed gluten-free foods. gluten-free processed foods have all those same icky ingredients as gluteny processed foods. Go with fresh or frozen fruits & veggies, & meat. 

I repeat, do not eat out unless it's a totally gluten-free restaurant. Cross contamination is rampant & it's tantamount to playing Russian Roulette. With dh, we can not afford to take the risk. Take food with you wherever you go. Keep something like Larabars in the car in case you get hungry or stuck somewhere. When you go to leave the house, drop a piece of fruit in your purse or some baggies of gluten-free granola, a box of raisins, stuff like that. Hard boiled eggs travel well. 

Make sure gluten crumbs have been cleaned out of your fridge & freezer, your utensil drawers. Check all your meds -- prescription & OTC as well as any vitamins you take & make sure they do not contain gluten. Check your shampoo. Shampoo can get in the mouth. Makeup, lipstick & balms. Face cream as it can get in your mouth. 

Condiments that were in your house pre-gluten-free -- ditch them & get new. One of the main areas of cc are condiments. Beware, some teas contain gluten ingredients. Every label, every time.

Your motto for life is "Every label, every time". Every time! Ingredients change so EVERY LABEL, EVERY TIME. When you refill meds, check again to be sure it STILL does not contain gluten. 


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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.

 


#25 Doorknocker

 
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Posted 27 August 2014 - 04:19 PM

Re-read the Newbie 101 again & go through your kitchen & make sure everything is in order. Also, does your hubs eat gluten or drink beer ever? You actually can get glutened by kissing. He has to brush his teeth REALLY well before you kiss. With the rash, every time you get glutened or even the slightest cross contamination, it fires back up all those antibodies & they get deposited under your skin again. You don't need any more than you have. You're trying to wait out the ones already existing. It's really imperative not to add more. 

The gut issues can be tricky in the beginning too. It can take a while for your body to settle down. For the 1st 6 months to a year it can be a rocky road with ups & downs. It does sound like you got a good glutening though. Celiacs who go gluten free & then get glutened almost always have stronger reactions if they get glutened. That's why so many can not complete a gluten challenge. Eat whole foods only for at least 3 months, preferably 6 months. This also means no processed gluten-free foods. gluten-free processed foods have all those same icky ingredients as gluteny processed foods. Go with fresh or frozen fruits & veggies, & meat. 

I repeat, do not eat out unless it's a totally gluten-free restaurant. Cross contamination is rampant & it's tantamount to playing Russian Roulette. With dh, we can not afford to take the risk. Take food with you wherever you go. Keep something like Larabars in the car in case you get hungry or stuck somewhere. When you go to leave the house, drop a piece of fruit in your purse or some baggies of gluten-free granola, a box of raisins, stuff like that. Hard boiled eggs travel well. 

Make sure gluten crumbs have been cleaned out of your fridge & freezer, your utensil drawers. Check all your meds -- prescription & OTC as well as any vitamins you take & make sure they do not contain gluten. Check your shampoo. Shampoo can get in the mouth. Makeup, lipstick & balms. Face cream as it can get in your mouth. 

Condiments that were in your house pre-gluten-free -- ditch them & get new. One of the main areas of cc are condiments. Beware, some teas contain gluten ingredients. Every label, every time.

Your motto for life is "Every label, every time". Every time! Ingredients change so EVERY LABEL, EVERY TIME. When you refill meds, check again to be sure it STILL does not contain gluten. 

I rechecked all my meds today and I think the vitamin D I was prescribed DOES contain gluten, or at least I know it's used in the factory. So I ditched that.  I'll get an OTC one if I have to. 

 

I did read the newbie info but at the time it was so overwhelming.  I will read it again!

 

I checked all shampoos and makeup, but then it's really hard to tell what's okay and what's not.  Now that I am more adjusted to this lifestyle, I'll have to go back and look again and read websites. 

 

The husband and I took a trip this summer, and I didn't get sick or glutened once.  He stopped only at local places and at off times, where we could talk to the server and the cook if we had to.  I guess that made me lazy about eating out.  Even my head rash was behaving at the time.  We were planning on taking a long weekend somewhere, so I think I'll take your advice and pack some snacks, and we can cook on our own, too. 

 

I never even thought about the utensil drawer.  The fridge has been scrubbed.  DH doesn't usually drink beer, but he does eat gluten.  Just not in our house.  He works swing shift, and sometimes packs muffins or granola.  I'm usually asleep when he gets home, though, so no kissing.  I did talk to him tonight when he called and he said we just need to make the house completely (human) gluten free.  He was kind of feeling sorry for me when I had to leave work early yesterday because I puked all over myself. 

 

Is there gluten in dog and cat food?  Not that I am eating that, but I do have to prepare cat food for certain birds in my house, that requires grinding and mixing, and I do have a dog and a cat.  Can the dogs gluten me?


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#26 squirmingitch

 
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Posted 27 August 2014 - 06:17 PM

Yes! Pet food can gluten you!!!! Pets lick themselves. drool & what the gluten goes on can get transferred to you. You said grinding..... do you use the same food processor? There could be a source of cc. There are grain free/gluten free pet foods. Just Google gluten-free dog food, cat food. Also, in the grinding process, if there's gluten in it, the powder can be breathed by you. What goes in your nose & down your throat, goes in your gut. Do you kiss your dog? I know I kiss mine all the time. She eats gluten free -- Fromm Grain free, Annamaet also makes grain free (gluten-free), lots of choices out there for gluten-free dog food. 

 

Believe me, I do know how overwhelming it is in the beginning. There is a hugely steep learning curve, sort of like climbing Mt. Everest. It takes a while to get all the rules down pat. 

Just Google whatever it is you're looking for & add gluten free & you will come up with lots of info. there is a thread on here for gluten free make up & shampoo & so forth. Some will say you don't need gluten-free make up or lotions but when you have dh, you really DO have to worry about it. DH is unbelievably sensitive to the tiniest amount of gluten. The med publications say the gluten molecule is too small to pass through skin. All fine & well but we have open sores! It doesn't have to pass through the skin b/c we scratched the skin off or the skin was compromised by a blister that ruptured. You see?

 

Here is a link to the forum where you can find lots of info. on not only food products but meds & topical products that are gluten-free.

http://www.celiac.co...topicfilter=all

Here is one on stuff like shampoo

http://www.celiac.co...oner-body-wash/

 

Personally, I just use Suave shampoo & conditioner -- cheap, does a good job, smells yummy & is gluten-free. Vaseline Intensive Rescue Repairing lotion is gluten-free. Dove deodorant is gluten-free. So is Mitchum. I think a lot of the Garnier (sp?) products are gluten-free. 

 

Call companies too when you're not sure. That's food, pharmaceutical companies (for prescriptions or OTC), cosmetics. & topicals as well as pet food companies. I call all the time. BTW, McCormick has gluten-free turkey & beef gravy packets now as well as chili mix & taco seasoning. I called them last week. They have an excellent policy for ensuring gluten-free is gluten-free. They will always reveal gluten ingredients on the ingredients list. With the new labeling law, things are going to get much easier for us!

 

Here's the Newbie 101 thread:

http://www.celiac.co...ewbie-info-101/

 

You know oatmeal is cc'd don't you? You have to have oats that are grown in certified fields & harvested & processed on clean equipment. Bob's Red Mill (BRM) has certified gluten-free oats. And BTW, it's a good idea not to eat even certified gluten-free oats for a year. The protein is so similar to the wheat protein that the body might react. So just skip the oats for a year.

 

As to travel.... get yourself together a travel kit --- 1 or 2 pots & pans, flexible cutting board, a few utensils, a small colander, toaster bags (you put your gluten-free bread in them to protect from gluten crumbs in a toaster) -- I think these things are listed in the Newbie 101. Put them all in a box & when you get rooms make sure you get a kitchenette & cook your own meals. You can not count on local places even when not busy to know all the rules or even for you to be able to TELL them all the rules. They just don't know how to be careful enough. WE make mistakes, how can we expect them to get it right????

When you took the trip, you may have just been on an "off" phase with the rash at that time. It can & does come & go at will even though you are eating gluten-free. It's going to take time. I hope you will not be as long as I have been but it's possible. I STILL get itchies. 400,000% improved but there are still antibodies under my skin that haven't left yet. I get days, 1 or 2, or 3 when I have nothing but then there are days when I do. They don't itch 24/7 anymore though & there are hours in between itchy "spells". 


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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.

 


#27 Doorknocker

 
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Posted 27 August 2014 - 07:51 PM

Good thing I don't like oatmeal!  I did know it was bad for me to eat, long before I got diagnosed.  :P   I never liked it.

 

I have a coffee grinder that is used only for the bird food I grind, but I never thought about the dust.  I guess I'll be getting masks and doing a lot of hand washing.  I only grind once a month and I always wash my hands after feeding or touching them, even if I never touch a crumb of their food.  I rescued them both none years ago and they have five year lifespans, so somehow I'll figure it out so they can live out their lives with the people they know and love.

 

Right now I have Neutrogena shampoo and conditioner and a Garnier leave in.  My hair hasn't been cut in well over a year and it was long and curly and a mess before I got the DH rash.  I haven't had it cut since.  I don't even know what to do with it anymore and until the rash clears up some, I don't really care.  I can't use a blow dryer or flat iron or anything with heat, so a ponytail it is.  My only issue with that is sometimes the weight of my hair (it's really thick!) pulls on my open wounds, and that hurts and is irritating.  I do call or google products I am not sure about - the problem is, it seems EVERY product is questionable and it takes a while to figure all that out.  I'm learning this. There is SO MUCH to learn! 

 

I can switch the dogs to gluten free, but I think the older dog already is.  She has a sensitive belly. Most times I just make her rice and chicken on my own - it helps her tolerate her medications better with less stinky gas!  The puppy in my pic, I'll have to check the package. I think both dogs are getting baths tomorrow. 

 

I really appreciate all your talk and your links.  There is so much to learn about gluten free.  Except in the summer, I cook almost every meal at home but when it's warm here my husband likes to take out the motorcycle, so we end up eating out a lot more.  Not so much this summer because I've been sick, but we did take that trip and he wants to do a final summer one this coming weekend.  We camp, so stopping at a local store and getting plain meat to grill is definitely possible and I can pack small snacks to eat for breakfast.  I am so bloated that I really don't eat more than twice a day. 

 

For anyone else that might be following this thread for its original content:  as long as I remember to take the pepcid (I got the Walgreens generic brand which is gluten free) and I use the steroid, it's not so fire ant-like and it's mostly tolerable.  I just want it to go away!


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