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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Pepcid And Thiamcinolone
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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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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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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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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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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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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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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.nih.gov/pubmed/10844495

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

http://www.dermnetnz.org/treatments/nicotinamide.html

http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2230.2000.00615.x/abstract

 

In this link, just scroll down to "management"

http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/Sansaricq_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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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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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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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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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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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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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-fol/lowiodinediet/

 

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

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

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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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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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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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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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