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Newly Diagnosed with Questions
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This is my third attempt at posting here. My first one just sounded pathetic. My second one soundeded lame. I will see if this post can say what I am wanting to say. :)

I am highly allergic to gluten and nuts. I instantly went into Denial and ate everything I could with gluten and peanuts in it. This was a very bad idea. I reacted strongly and got very sick in multiple ways. The positive note is that I quickly accepted that I cannot eat gluten or nuts! I also found that I cannot eat chocolate :(

I have been on Prednasone for two months now. I am beginning to wean off slowly. In about another month I should be off of it. I really do not want to be on the Prednasone, but being off scares me too. I know this makes no sense, but it is true.

I also get afraid to eat. Is this normal? (I do not have an "eating disorder")

It just seems like I react to foods that I thought were OK. My doctor mentioned that I may be reacting to "fermentation". I really do not know what that means!?!? He wants to test me for that when I am off the Prednasone.

I cried after my first attempt to post--It is the first time I have cried since finding this information out. I find this to be pathetic too. Especially when I see all of the positive posts and the foods that I *can* eat! Perhaps this is part of the process of figuring this all out, yes?

Anyway, this is a great site--and I am sure that I will be utilizing the site often! Thanks to all who have shared there experiences and found foods that we can eat!

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Hi LJ,

Welcome to the forum! You might get more responses if you start a new thread. Anyhow, prednisone is a serious drug. Weaning off it would be a good idea. Celiac often causes symptoms for us after going gluten-free. Sometimes they can go on for months or years. But it is possible to get better and heal your gut if you follow the suggestions in the newbie thread and keep away from gluten. Healing can take time. Secondary food intolerances can be an issue also. Stick around and read and ask questions. We are glad to help! :D

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

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

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article

http://www.nature.co...jg2012236a.html

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Thanks GFinDC for your reply!

The information links are a good place for me to start-and I will start reading up on this! I will also start with your advice regarding the first 6 months of gluten free eating!

Is it normal to be "afraid to eat"? I have lost more weight--so I know I need to eat the right foods! Your suggestions are helpful and I will use them! Thank you! :rolleyes:

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Is it normal to be "afraid to eat"? I have lost more weight--so I know I need to eat the right foods! Your suggestions are helpful and I will use them! Thank you! :rolleyes:

Hon, do not be afraid to eat. okay. Your body needs nourishment.

Make a shopping list of the foods you know are okay for you.

Gradually, you can add more foods back in. Take it slowly, but by all means, EAT.

Welcome to the forum.

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Hon, do not be afraid to eat. okay. Your body needs nourishment.

Make a shopping list of the foods you know are okay for you.

Gradually, you can add more foods back in. Take it slowly, but by all means, EAT.

Welcome to the forum.

Thank you Irish Heart!

After reading through the forum here, I definitely have seen some foods I need and can eat! It was not until I wrote last night, that I realized how "fearful" I had become to eat food. :( A body can not survive long without eating (or as we all know so well, if we eat the "wrong" foods)! I am beginning to learn what I can and can *not* eat!

I thank everyone for their support and encouragement! This is such an uplifting and informative site! :) I am so glad I found it!

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Thank you Irish Heart!

After reading through the forum here, I definitely have seen some foods I need and can eat! It was not until I wrote last night, that I realized how "fearful" I had become to eat food. :( A body can not survive long without eating (or as we all know so well, if we eat the "wrong" foods)! I am beginning to learn what I can and can *not* eat!

I thank everyone for their support and encouragement! This is such an uplifting and informative site! :) I am so glad I found it!

I felt the same way as a "newbie" :) . When I finally got affirmation that I did, indeed, have celiac, I was deathly ill. I could not swallow anything without intense burning in my mouth...and all the way down my GI tract to my rectum.

I did not want to eat either. Who would want to? We either throw it up or lose it in the loo....so, I would try small amounts of food like baked chicken, brown rice, green beans....berries, nuts, that sort of thing. In time, they agreed with me. :)

As my gut healed, my appetite increased and my fear of having symptoms (not really a fear of food exactly) decreased.

I did avoid dairy, soy, citrus, alcohol, coffee and other gut irritants for almost a year. But this was MY experience and others heal at different rates.

You're going to be okay! ;)

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Thanks GFinDC for your reply!

The information links are a good place for me to start-and I will start reading up on this! I will also start with your advice regarding the first 6 months of gluten free eating!

Is it normal to be "afraid to eat"? I have lost more weight--so I know I need to eat the right foods! Your suggestions are helpful and I will use them! Thank you! :rolleyes:

You are welcome L.J, I hope you feel better soon. I don't know if it is normal or not to be afraid to eat, I just know I felt that way sometimes myself. When it all comes back out anyway, and somewhat explosively, it can seem like a waste of time. It might help to eat small quantities at a time, and keep water handy to wash things down. It could take a while for your digestion to settle down, so being easy on it is a good thing. Trying some Betaine HCL once in a while may hep too. It augments the stomach acid and can help with digestion.

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Irish Heart & GFinDC...

Thank you for the encouraging (and confirming words). My mouth hurt so bad that it peeled-with the sores in the last week, and yes, clear through the throat, stomach and into the loo! It is an accurate statement to be "afraid of the symptoms"--not the food! A great turnaround on my "mindframe on food".

I react extremely quickly to foods--getting what I am finding to be common as "the DH"??An extreme rash that covers my body. I actually had to wear gloves to cover what were "blisters" all over my hands (tops & palms) as well as arms, legs, etc. Almost-- where "weren't" they? :unsure:

The milk does appear to be affecting me more than I thought--one cheese rice cake--and within 30 minutes, I had three new sores. (This is why I get fearful of going off the Prednasone--as nasty as that medicine is. It helps the intense rashes I get!).

I am not familiar with Betaine HCL -- Could you say more about it? What area do I find it in? Specifically, what is it?

I get D., and it burns everywhere. Between the sore mouth, sores on hands/body, and sore body parts... :( I try to eat "hard boiled eggs, gluten free bread, gluten free lunch meat, and raw vegs, fruits, etc." I try to branch out--then get "burned". Literally and figuratively :lol:

A long post--Thank you again. I am trying to eat--and the cheese rice cakes (that I ate today) are out the door as of today. Thanks for the encouragement, support and ideas. I really need them! The bad times are still with me, but fortunately I am still "fighting the dragon"--to quote Irish Heart's motto (right?) !!! P.S. GFinDC-- For some reason I find great comfort in your farting motto as well! :D:)

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Okay L.J. tell us more about your rash please. You are getting little water blisters? What do they do? Do they itch?

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Okay L.J. tell us more about your rash please. You are getting little water blisters? What do they do? Do they itch?

The blisters start out as an itchy "sore"--then quickly turn into full blown blisters. Some small, and some get as big as a quarter on the palms of my hands. They covered my hands in multiple masses of water blisters and then blended into a huge mass of painful, horrendous blisters that took weeks to go away and covered all of my hands. They were on the palms of my hands, the tops, and covered my fingers on all sides. Proceeded up my arms in patches, loving to hang around my elbows and arms--both forearms and upper arms inside and under my armpits, on to my back, side, and legs. On my legs, they were more like oozy, itchy sores. At night, I would scratch (without meaning to) until they bled. Then I had sores that were oozy and a bloody mess. They had no mercy--as they went to private places as well that were sensitive from the d. that would come quickly and surprisingly.

If I "catch the sores in time", I put a cream my doctor gave me called Fluocinonide, .05%. I was told to put it on whenever the sore began to try to avoid the blisters. Once I was on the Prednasone and put the cream on, it took three weeks for them to "heal most of the way". I still wear white cotton gloves to bed every night to keep the cream on the new outbreaks that seem to develop daily. It has been two months plus. I am weaning off Prednasone now for the next three weeks up to this date.

The sores in my mouth covered my lips, inside all of my mouth, tongue and throat. I found an oral cleanser called Gly-Oxide (Carbamide Peroxide 10%) that helped ease the mouth pain. It actually helped to heal the sores quicker than I thought. Some relief quickly! :) Then the inside of my mouth kind of peeled off in layers. If I washed my teeth, some of the gunk from the sores seemed to peel off and I would spit it out--seeing the leftover skin from my mouth. (This seems too graphic for this forum, but...it helps to explain it) :)

Presently, the sores in my mouth are better. I still have some irritations in my mouth that comes and goes. Right now, there is some on the roof of my mouth. But they are not nearly as bad as they were!

I called this time "hell". (Too much to say that word?) I thought I was goin' to die from pain, itching, sores, blisters, diarrea, sensitive skin in personal areas, etc.

I thank you for asking though. No one has really asked me how it actually looked, or how it felt for me so specifically and directly. My doctor did not see the sores in my mouth when they "exploded". I had them mostly cleared up Have you heard of these types of problems before?

I have not heard such specific issues about blisters, sores, on type of the stomach uch all together before. I'm a Newbie... :) But I am learning to eat again

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Hi LJ,

Squirmy has all the dope on DH ( dermatits herpetiformis), the skin rash version of celiac disease. So stick around for her reply. Has your doctor tested you for DH?

Betaine HCL is a pill that you take to aid digestion. It turns to stomach acid when it dissolves in the stomach. Sometimes people have low stomach acid and that can lead to poor digestion and increased numbers of bad bacteria in the gut. Stomach acid production decreases as we age same as hormones (thyroid etc) do. H.Pylori also decreases stomach acid production.

Don't worry about TMI, we have all had problems of one sort or another, so we are used to those issues. Squirmy will probably tell you about avoiding iodine for DH when it flares, and how to get tested properly. You might want to look at the DH section of the forum for threads on it.

LOL on the motto, it may be the neighbors wouldn't agree eh? :D

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Hi GFin, (May I call you that--I know it is gluten-free probably, but I think of you as GFin :D:) ?)

I will check out the DH format. I had a blood test--but the doctor said he had questions about the lab because the results were poor. I had already tested out the options of food--so I knew that gluten & nuts were a problem.

I will look into the Betaine HCL. I thought I had high stomach acid--but I really have no idea. I did try Probiotics on Saturday after seeing that it helps. It ended up causing me 6 hours of diarrea. I was told that Probiotics are not supposed to do this--and that my body was "in crisis". (I kind of figured that one out by now) :) So, I am hesitant to try the Betaine on a week day--I cannot have diarrea and instruct. (It tends to interrupt the lectures :) I guess I need to ask what TMI is??? Is that graphic language that describes the symptoms, etc.?

After hearing about the Probiotics, should I still try the Betaine or wait until the weekend? Just wondering about your thoughts on this?

I thank you for responding as always! And I am always thankful for a fart--it means no diarrea! just the stomach working! :) (The neighbors will have to live with it!)

My doctor who saw the blisters just said get tested immediately--or I will have another "episode" of this...:( That I would prefer to avoid! I was treated like a leper at work--and no one even knew about the "runs to the toily"... (literally) Thanks for your encouragement and support.

Could I ask what you started eating at first? The more ideas on that the better. I would like to try some new foods that have been safe for others--better than exploring new foods and having reactions, yes?

Thanks again, and I so appreciate your feedback - as well as other's! I find it comforting. That is the word that keeps coming to my mind when I think of this forum.

Hi LJ,

Squirmy has all the dope on DH ( dermatits herpetiformis), the skin rash version of celiac disease. So stick around for her reply. Has your doctor tested you for DH?

Betaine HCL is a pill that you take to aid digestion. It turns to stomach acid when it dissolves in the stomach. Sometimes people have low stomach acid and that can lead to poor digestion and increased numbers of bad bacteria in the gut. Stomach acid production decreases as we age same as hormones (thyroid etc) do. H.Pylori also decreases stomach acid production.

Don't worry about TMI, we have all had problems of one sort or another, so we are used to those issues. Squirmy will probably tell you about avoiding iodine for DH when it flares, and how to get tested properly. You might want to look at the DH section of the forum for threads on it.

LOL on the motto, it may be the neighbors wouldn't agree eh? :D

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My gosh L.J.! I don't quite know what to say about your blisters! It's certainly the very, very worst I have heard of. However, I have seen some photos on the internet of dh that rocked me backwards in my seat with the intensity of them & I always think, "If that were me, I would not be able to bear it & would probably kill myself." Just being honest here. I have had & still am having a devil of a time with dh & I can't imagine what you are going through. You need some major, big time hugs!!!!!!!!!!!!!!!!!!!! (((((((((L.J.)))))))))))))

I hardly know where to begin. Ask G.F. if he's ever seen me speechless. NO!

You need to get a dh biopsy.

http://apps.elsevier.es/watermark/ctl_servlet?_f=10&pident_articulo=13187593&pident_usuario=0&pcontactid=&pident_revista=403&ty=73&accion=L&origen=elsevier&web=www.elsevier.es&lan=en&fichero=103v101n10a13187593pdf001_2.pdf

http://www.arupconsult.com/Topics/DermHerpetiformis.html#tabs=3

http://www.csaceliacs.info/diagnosis_of_dermatitis_herpetiformis.jsp

http://www.celiac.nih.gov/Dermatitis.aspx

You need to go low iodine right now & see if it helps tone down the lesions. Iodine is medically known to make dh go nuts! Most of us with dh have to limit our iodine intake at least temporarily. A few have not found that to be the case. But it's worth a shot for you. A link for low iodine diet. You will of course have to minus the gluten from the diet. But it will tell you which foods you need to avoid to go low iodine.

http://www.thyca.org/rai.htm#diet

Your'e going to need some info. I can't find the bookmarks for at the moment but I'll be working on it.

In the meantime here are some links for you to read:

Interesting Reading on DH:

Descriptions of DH Types:

Help for the Itching, Stinging, Burning, Pain of DH:

DH Photobank:

I'll be back when I can.

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Hi Squirmy!

Thanks for the hugs! You are right, I needed some! :)

Also, thank you for the info on the iodine free diet. When I read the list, I found out that I regularly use sea salt (although since eating gluten free-have found that the taste of salt is too strong--so I have not been eating salt at all)! I have been living on eggs, legumes, (kidney, black, pinto beans) and have been eating shrimp once to twice per week. It seemed healthy and full of protein. I have also been eating tofu twice a week--Including these last few days. :( And, until yesterday afternoon--I have been eating milk--especially yogurt & cheese. All on the no-eat list :( But, I found the list of foods to eat--and will focus on those minus the gluten.

Wow. If Iodine makes the DH worse, then no wonder I am having daily outbreaks! It surprises me regarding the iodine.

I also will incorporate the new information into my eating...Think fresh veg's & fruits and homecooked healthy protein, yes??? LOL

I thank you so much for your help. My goal is to try to not have any outbreaks for a period of 3 days. I would know what I was doing was helping...make that 2 days! :)

I trust you are able to speak fluently again! I do not want to take your beautiful words of wisdom away! :)

P.S. I appreciate your honesty! I happen to value it highly in our world! :)

Thank you again!

L.J.

My gosh L.J.! I don't quite know what to say about your blisters! It's certainly the very, very worst I have heard of. However, I have seen some photos on the internet of dh that rocked me backwards in my seat with the intensity of them & I always think, "If that were me, I would not be able to bear it & would probably kill myself." Just being honest here. I have had & still am having a devil of a time with dh & I can't imagine what you are going through. You need some major, big time hugs!!!!!!!!!!!!!!!!!!!! (((((((((L.J.)))))))))))))

I hardly know where to begin. Ask G.F. if he's ever seen me speechless. NO!

You need to get a dh biopsy.

http://apps.elsevier.es/watermark/ctl_servlet?_f=10&pident_articulo=13187593&pident_usuario=0&pcontactid=&pident_revista=403&ty=73&accion=L&origen=elsevier&web=www.elsevier.es&lan=en&fichero=103v101n10a13187593pdf001_2.pdf

http://www.arupconsult.com/Topics/DermHerpetiformis.html#tabs=3

http://www.csaceliacs.info/diagnosis_of_dermatitis_herpetiformis.jsp

http://www.celiac.nih.gov/Dermatitis.aspx

You need to go low iodine right now & see if it helps tone down the lesions. Iodine is medically known to make dh go nuts! Most of us with dh have to limit our iodine intake at least temporarily. A few have not found that to be the case. But it's worth a shot for you. A link for low iodine diet. You will of course have to minus the gluten from the diet. But it will tell you which foods you need to avoid to go low iodine.

http://www.thyca.org/rai.htm#diet

Your'e going to need some info. I can't find the bookmarks for at the moment but I'll be working on it.

In the meantime here are some links for you to read:

Interesting Reading on DH:

Descriptions of DH Types:

Help for the Itching, Stinging, Burning, Pain of DH:

DH Photobank:

I'll be back when I can.

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I understand the feeling. I got to the point where i too was afraid to eat anything (still kinda there >.> wish i could just stop it but nooooo). My doctors know about it ("Just try to eat something") and slowly (very slowly) i've been adding things back into my diet.

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L.J., I'm still working on getting you some more info. but have a question ---- Do you want an official dx or are you content to know that gluten as well as nuts are a problem for you? If you want an official dx --- how BADLY do you want to pursue that course of action?

To get dx'd you have a major obstacle ---- the Prednisone ---- AND the fluocinonide which I looked up & it is a corticosteroid. Steroids, oral or topical within the last 2 probably 3 months make a wash of dh biopsies. False negative. Oral steroids within the same time period make a wash of the celiac blood panel as well as an endoscopy with biopsy. False negative.

You need to actively have been eating gluten for a period of time for ANY of the tests or else you're looking at false negatives. Sigh.

Also, I'm not sure, to be honest, how to deal with your skin issues. The question is --- is ALL of it from dh OR is the nut allergy having an effect? I just don't know about that. I have never had a nut allergy & truthfully am not familiar with what kinds of reaction ppl have to that. But I know there are ppl on this board who know ALL about that stuff & hopefully they will see this thread & come tell us some stuff to help us figure this out.

Normally I am personally against the use of Dapsone but in your case --- dear, I think you NEED it; at least for a while. Not all ppl tolerate Dapsone. And you need to research it before you decide to give it a go. It can cause anemia. IT can give you a rash. It can damage your liver. You would need liver panels done before going on it & you would need regular blood draws to monitor & make sure it's not hurting you. But Dapsone works very QUICKLY to get rid of the itch & begin the healing process & have no more lesions. I tell newbies that the problem with Dapsone is it gives you a false sense of security. You won't have any outbreaks & you won't therefore know when you are getting glutened. But in your particular case it seems that you are having lots of GI problems & indicators besides the skin so you may have a way of telling anyway. Most of us (but not all) with dh have very mild GI indicators or none at all. This does not seem to be the case with you.

Okay, this is going to be tough for you to hear but I'm a straight shooter so here goes. With dh; when ppl come off the steroids, the rash comes raging back with a vengeance. It may help a little that you are tapering & for your sake I hope so but I'm just telling you so you will know what's happening & why.

I think your story needs to stay in one thread so others can help as much as possible & will have all your info. in the one thread to help you better. I'm going to go over to the dh forum & try to call in some troops to help you over here with the dh part of this.

Oh yeah. I did the same thing when first starting the gluten-free diet --- I thought, "MAN, am I ever eating healthy!" And I was but it was healthy in all the wrong ways. Been there, done that. It sounds like your guts are a mess so take it easy & eat very plain & simple --- no spices & such. I wonder if your problem with nuts is something that is just b/c your gut is so fragile right now. It could be that you get nuts back after you heal.

You hit me where I live with your goal of no outbreaks for 3 days amended to 2.laugh.gif Boy, do I ever know that feeling! How about 1 day?biggrin.gif 12 hours?tongue.gif Okay, we'll settle for 6 hours. How about just no oozing? Hmmmm.... I'll trade no more oozing for 10 new lesions. I think I'm getting punchy here.rolleyes.gif

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Hey ya LJ,

Yep, GFin is fine with me. I am also sometimes called Paul, or hosehead, but anything is fine really.

Waiting until the weekend is a good idea. You don't need to be in a hurry to try things except for going gluten-free really, after your testing is done anyway. I used to not try anything new food wise until Friday night, so if I got sick it wouldn't affect my work as much. The backfire on that was if I got sick I usually couldn't sleep anyway and I would be loopy and out of it on Monday from lack of sleep. Can't win for losing as they say. :)

What I did when first starting gluten-free is not what I would do today, after 5 years on the gluten-free diet. I found several other intolerances in addition to gluten but it took me a while to identify them. Quite a while actually. Some of them actually developed after going gluten-free. When I first went gluten-free I ate gluten-free bread and such baked things. Now I don't eat any bread or much of any baked goods either. I do eat corn tortillas and some gluten-free chips, mostly sweet potato chips. And Corn Thins, which are kind of like flattened out rice cakes, they are non-GMO corn. I get my peanut butter at Yes! Organic Market. They have a grinder in the store so you can grind your own. Mostly I eat eggs, meats, fruits and nuts. I drink water most of the time. altho with cold wather getting here I will drink some herbal teas. I eat Daiya faux cheese shreds, those are ok. I am ok with most veggies except for nightshades, soy, and carrots. No dairy. No wine because grapes cause my feet and ankles to swell. So I just don't drink anything. There is a higher chance of liver disease for people with celiac, so I figure it is best to avoid alcohol, unlike Jestgar (civkeb mommy). Sorry inside joke there. You'll eventually get it if you stray into the silly thread (gab/chat room).

I guess the thing is, we all seem to have our foods that cause us problems, beyond gluten. Common food issues seem to be nightshades, soy, corn, oats, dairy, etc. Those are not in any particular order. One idea is to avoid the top 8 common food allergens at first, even tho celiac is not an allergy. But we do develop intolerances and sometimes allergies to foods. That may be too much for someone just starting out tho, and may not be nessacary. Diary is the most common starting problem food, as celiac destroys the villi in the small intestine that produce the enzyme (lactase) that digests dairy sugar.

Keeping your meals simple and avoiding lots of spices would be a good start. Especaily spice mixes or seasoning blends, which may have gluten in them. Single ingredient spices are usually fine.

Well, that's probably more confusing than helpful. Eat simple, and eat foods you cook from whole ingredients. Make extra to take to work with you. Fruits travel well and Lara bars are gluten-free too.

Eggs may be a problem for the iodine free diet part. So check Squirmy's links for that.

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L.J, I will never have anything worthy to add after spuirming has been on - she looks after us well and never seems to tire of having to repeat herself. A real treasure for all of us! But I did just want to say 'welcome' and add my hug ((((L.J)))

All the literature seems to indicate that mucosal blisters (i.e the ones in your mouth) are rare, and I'm sorry that you've seem to have acquired them :-( I'm sure this may have been covered, but can't see it anywhere - if you're going for the biopsy you need to still be ingesting gluten and ensure the biopsy is taken from next to an active lesion and not directly over one.

Do you have supportive people around you? Friends, family, church (perhaps we can rule out colleagues??) One thing I realised is that as a busy mum of young ones and working, I needed to claim some time for research, meal planning etc. I'm still in this phase and I believe it's important to be able to lay a good foundation and to ground yourself in the midst of chaos and new information overload.

Also, the emotional side of this is very real. There is much positivity on here and it is important to have that. But there are also a lot of very wise people who have been travelling this road for years and have got things in place to be able to maintain that positivity. Give yourself much room and grace as you deal with this.

Welcome to our little community

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Hi LJ,

Welcome to the forum! You might get more responses if you start a new thread. Anyhow, prednisone is a serious drug. Weaning off it would be a good idea. Celiac often causes symptoms for us after going gluten-free. Sometimes they can go on for months or years. But it is possible to get better and heal your gut if you follow the suggestions in the newbie thread and keep away from gluten. Healing can take time. Secondary food intolerances can be an issue also. Stick around and read and ask questions. We are glad to help! :D

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

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

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article

http://www.nature.co...jg2012236a.html

GFinDC - sorry to add a side note, but this is a great round up. Thank you.

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I understand the feeling. I got to the point where i too was afraid to eat anything (still kinda there >.> wish i could just stop it but nooooo). My doctors know about it ("Just try to eat something") and slowly (very slowly) i've been adding things back into my diet.

Hi Shadowicewolf!

I know that our bodies need food. I also know our bodies reject the wrong foods. Or lotions, potions, make-up, milk, ... where does the list end?

Thanks to GFin, Squirmy, and Irish Heart, I got amazing information that helps me to move forward with this fear of food... There are many foods we can eat (we just have to find them) ... So I decided that when I find that I have to "give up" one food (or product)--I *find* a replacement for it.

My goal is to find one replacement for every one thing that I give up. So, my list so far includes: Cannot use Cetaphyl *Lotion*--It has gluten--and my skin hates it!

I Replaced it with Vanicream - No Gluten :)

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GFinDC - sorry to add a side note, but this is a great round up. Thank you.

GFin--This is an *Amazing* list--and I so appreciate you all. I am still getting used to the formatting here--so there is a reply that was sent, but I wasn't quite done. The positive note I have is to you GFin, Thank you for your feedback and comfort.

To Irish Heart, Thank you for saying to EAT!

To Squirmy, Thank you for the time, energy and understanding of the horrendous rashes we endure!

On a positive note, I said in the post that clicked away--I am removing one thing and adding another. No deprivation feeling that way! :)

Instead of Cetaphyl Lotion, I am using Vanicream (no gluten) my skin is happy :D

Instead of Cheese & Milk, I am eating fresh meat that is cooked--and cut up for snacks!

Instead of Eggs, (this was a heart breaker :( I am eating a fresh pear or apple!

I had only two (very small) spots on my skin in the last 24 hours! That is a record!

Let us Embrace what we can eat -- and to hell with the things that poison us! :)

I can sleep without itching. Go to the toily without running (literally). And smile!

I find that I had a change of heart when I thought to myself, "I am upset because I am cursed with only eating healthy foods that are fresh, cooked or raw, and not full of poisons?" I then knew that I could move forward and eat, enjoy life, relish the positives, and disregard the poison. Who needs poison in their bodies??? :D

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\Let us Embrace what we can eat -- and to hell with the things that poison us! :)

I can sleep without itching. Go to the toily without running (literally). And smile!

I find that I had a change of heart when I thought to myself, "I am upset because I am cursed with only eating healthy foods that are fresh, cooked or raw, and not full of poisons?" I then knew that I could move forward and eat, enjoy life, relish the positives, and disregard the poison. Who needs poison in their bodies??? :D

L.J., you are one who TOTALLY gets it!! :D

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L.J., you are one who TOTALLY gets it!! :D

Hi All!

I thank each of you (as always) and am grateful for every response!

I know that fear paralyzes us. And then we hide from everything--When we focus on the positive things--we gain "fight"--meaning, instead of feeling helpless, we feel empowered.

By the time someone becomes a member here--they probably know these feelings by now!

This forum empowers us! We know there are options--but the treasure hunt to find them is the hard part :blink: Ohhhhh, but then we find *one* thing that works for us--and we feel bliss! :D It makes me feel so grateful to find just one thing... for most of us, it seems that we become grateful for the small things in life and appreciate them more. It is a new perspective--but I love it! It some how brings us a new outlook on how we perceive the world around us! :)

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Hi Squirmy!

I do not care if I have an "official" dx. I have "tested" the foods that are on the "NO EAT LIST"--and of course--had horrendous problems.

I appreciate you being a straight-shooter. I know that the Prednasone is "helping" with the outbreaks. (That's why I fear getting off of them)... But I also know that I will not go back to eating gluten or nuts. I do know my body is so out of whack now that the slightest thing I eat that is not "safe" for me I will react to.

You are so right when you talked about the negative positive--or is it positive negative? :) I trust my gut and trust the "outbreaks". You are also right when I am grateful for hours without a dh reaction. I have cut out as many of the high iodine foods you recommended...and--sure enough, had fewer DH outbreaks that were *smaller*! One small victory over the DH! Pure Joy for that "small step"! It does not take much to make us happy it seems! Perhaps that is part of the lessons we learn from this...enjoy the small steps of success! :)

Regarding the cream of fluocinonide--it cuts down the length of time the sores last if I catch it in time. (I think I am addicted to it) Without it, I have a major explosion in *all* ways! :( But I have learned to take one day at a time, enjoy that day *OR* learn from that day. Either way, it is a win-win. Even with a gut reaction or DH reaction--I learned about a poison (for me) that I cannot eat. That is Knowledge! With knowledge comes wisdom--with wisdom comes empowerment--and that is when we start to feel like:

"We will win this fight--We will fall in battle sometimes--but We will get up and keep on going gaining knowledge, wisdom and truth"!

That is my mantra...One day at a time--one piece of "safe" food, lotion, potion (etc) with JOY! :D

L.J., I'm still working on getting you some more info. but have a question ---- Do you want an official dx or are you content to know that gluten as well as nuts are a problem for you? If you want an official dx --- how BADLY do you want to pursue that course of action?

To get dx'd you have a major obstacle ---- the Prednisone ---- AND the fluocinonide which I looked up & it is a corticosteroid. Steroids, oral or topical within the last 2 probably 3 months make a wash of dh biopsies. False negative. Oral steroids within the same time period make a wash of the celiac blood panel as well as an endoscopy with biopsy. False negative.

You need to actively have been eating gluten for a period of time for ANY of the tests or else you're looking at false negatives. Sigh.

Also, I'm not sure, to be honest, how to deal with your skin issues. The question is --- is ALL of it from dh OR is the nut allergy having an effect? I just don't know about that. I have never had a nut allergy & truthfully am not familiar with what kinds of reaction ppl have to that. But I know there are ppl on this board who know ALL about that stuff & hopefully they will see this thread & come tell us some stuff to help us figure this out.

Normally I am personally against the use of Dapsone but in your case --- dear, I think you NEED it; at least for a while. Not all ppl tolerate Dapsone. And you need to research it before you decide to give it a go. It can cause anemia. IT can give you a rash. It can damage your liver. You would need liver panels done before going on it & you would need regular blood draws to monitor & make sure it's not hurting you. But Dapsone works very QUICKLY to get rid of the itch & begin the healing process & have no more lesions. I tell newbies that the problem with Dapsone is it gives you a false sense of security. You won't have any outbreaks & you won't therefore know when you are getting glutened. But in your particular case it seems that you are having lots of GI problems & indicators besides the skin so you may have a way of telling anyway. Most of us (but not all) with dh have very mild GI indicators or none at all. This does not seem to be the case with you.

Okay, this is going to be tough for you to hear but I'm a straight shooter so here goes. With dh; when ppl come off the steroids, the rash comes raging back with a vengeance. It may help a little that you are tapering & for your sake I hope so but I'm just telling you so you will know what's happening & why.

I think your story needs to stay in one thread so others can help as much as possible & will have all your info. in the one thread to help you better. I'm going to go over to the dh forum & try to call in some troops to help you over here with the dh part of this.

Oh yeah. I did the same thing when first starting the gluten-free diet --- I thought, "MAN, am I ever eating healthy!" And I was but it was healthy in all the wrong ways. Been there, done that. It sounds like your guts are a mess so take it easy & eat very plain & simple --- no spices & such. I wonder if your problem with nuts is something that is just b/c your gut is so fragile right now. It could be that you get nuts back after you heal.

You hit me where I live with your goal of no outbreaks for 3 days amended to 2.laugh.gif Boy, do I ever know that feeling! How about 1 day?biggrin.gif 12 hours?tongue.gif Okay, we'll settle for 6 hours. How about just no oozing? Hmmmm.... I'll trade no more oozing for 10 new lesions. I think I'm getting punchy here.rolleyes.gif

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I understand the feeling. I got to the point where i too was afraid to eat anything (still kinda there >.> wish i could just stop it but nooooo). My doctors know about it ("Just try to eat something") and slowly (very slowly) i've been adding things back into my diet.

Shadowicewolf,

May I ask what your "safe" foods are? Do you have three things that you are 99.9% sure that you can eat? Do you have four? Do you see where I'm going with this? :) Fear makes us feel weak. Let us go forward and embrace the few foods we feel safe to eat--and slowly venture into new territory ;)

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