Questions from recent diagnosed celiac

[CeliacFashionista 1]

I have severe Dh, tried dapsone and it made me break out in pinpoint red dots all over my body. I have been gluten free for 3 months now and it seems like my skin is getting worse. I am on a low iodine diet and it has helped but I'm still breaking out! I'm starting to think is caused by candida. I seemed to get a yeast infection at the same time I my Dh started getting worse. I cut out my kefir(probiotics) because I wanted to go low iodine. I am also getting of a course of prednisone which help get the Dh under control. I have no clue what else to do now and this is really getting me down. I am barley eating anything because it seems everything makes it worse. I have no more money to spend buying ANYTHING because of all the money I've spent trying to treat this. UGH PLEASE HELP ME!!!!!!! This sis driving me nuts I dnt even wanna wake up anymore!

[pricklypear1971 355]

I'm sorry you're going through this. DH is awful.

I remember you were headed to a doctor a while ago-was the pred the result of that visit? Did you discuss dapsone? What did the doctor say?

You say the low iodine diet us helping but you're still flaring. That is unfortunately, normal, for quite a few people. Have you thought about salicylates? There are quite a few people on the board right now struggling with sals and they could give you pointers. From my observation, most people have major triggers other than gluten - iodine, sals, SPECIFIC foods (corn, quinoa, soy, etc.) and figuring them out is key to recovery. http://salicylatesensitivity.com/

I was on pred, as well as two shots of steroids and a steroid cream. I can only describe the experience as life altering - I had adrenal issues, blood sugar issues, I was mentally losing it as well as physically. While I understand your desperation (because I was there) please be aware prednisone can be as equally devastating as it is helpful. Also, most people have a rebound effect coming off, and the rash can come back with a vengeance. Please wean yourself off very slowly.

I'm sure you know, but I will repeat it. Dh sufferers seem to be more sensitive to topical gluten, so if you haven't screened your skin care I suggest doing so. Also, DH likes to be moisturized - I like Vanicream or a pure oil like jojoba, and even Vaseline from time to time. Ice packs help me sleep - pack them on to bring down itching.

[dani nero 50]

I have severe Dh, tried dapsone and it made me break out in pinpoint red dots all over my body. I have been gluten free for 3 months now and it seems like my skin is getting worse. I am on a low iodine diet and it has helped but I'm still breaking out! I'm starting to think is caused by candida. I seemed to get a yeast infection at the same time I my Dh started getting worse. I cut out my kefir(probiotics) because I wanted to go low iodine. I am also getting of a course of prednisone which help get the Dh under control. I have no clue what else to do now and this is really getting me down. I am barley eating anything because it seems everything makes it worse. I have no more money to spend buying ANYTHING because of all the money I've spent trying to treat this. UGH PLEASE HELP ME!!!!!!! This sis driving me nuts I dnt even wanna wake up anymore!

Can you make a list of everything you've been eating?

I have a feeling that most of the foods in your diet as well as most of your hygiene products might be high on salicylates. It turns out that going all "natural" doesn't suit some of us :-(

I also thought I had a candida problem, until Prickly advised me to read about sals, and my DH was better within days of eliminating sals.

Also have you made sure none of the medications you've been using contain anything you might be reacting to?

[dani nero 50]

You might also want to read through this thread

[squirmingitch 629]

Hi Fashionista, Prickly is right & Dani backs her up & I'm going to third that.

A) I first had steroids when I was misdiagnosed as a rash caused by nerves. When you go off the steroids it comes roaring back & I wan't able to stay off them until I discovered I have dh & Prickly told me about the steroids. I then weaned myself off them very, very slowly.

I discovered I had a problem with soy. Got off that.

C) I was low iodine too & the rash just wouldn't stay down. The good people on this forum dissected everything I was doing & it came down to too many sals. I went low sal & almost overnight the dh began rapid improvement.

D) Then I was doing great. And then I had some Quinoa. Uh Oh. Rash came back as well as feeling like I was glutened. No more Quinoa for me! I'm getting better already.

You don't have to spend any more money on this. Wean off the steroids, eat low sals & don't eat corn or Quinoa or Amaranth until down the line a few months when you can trial those foods.

Prickly is right, Vanicream, Vaseline, ice packs. I also find using the coolest water you can stand to bathe with b/c hot water irritates it. I douse my body with Witch hazel after bathing --- it cools it & seems to mellow the itch. Make sure all your topical stuff is gluten-free.

Read the thread Dani posted for you ---- that's my "going crazy" thread where we went through everything I was doing & it came down to high sals.

[CeliacFashionista 1]

What foods are high in sals? I'm eating almost nothing now. I have only had bananas, almonds, cranberries and I tried eating chicken last nite. THATS IT! I cut out soy a weeks ago...the reason I think its candida is because 1. I seemed to get a yeast infection at the same time my dh started getting worse. 2. When drink kefir w/ raw milk I only got new sores when glutened. I was eating tons of iodine with no reaction but get a reaction to the slightest amount of iodine now. 3. All the foods that exaggerate candida also exaggerate dh. I'm gonna try to get rid of this candida and see if anything changes. If not I will try the low sals diet.

[CeliacFashionista 1]

I also have a white coated tounge and my hair is starting to thin. I use johnsons baby wash and apricot scrub n my face. I use shea butter as a lotion. Also products with zinc oxide seem to help with healing.

[squirmingitch 629]

http://salicylatesensitivity.com/about/food-guide/

http://everydaywithadhd.createyouroutcome.com.au/user-assets/Info_Sheets/Salicylate_Food_Chart.pdf

http://www.mysensitiveskincare.com/salicylate-free-diet.html

http://www.foodsmatter.com/allergy_intolerance/salicylate/articles/salintol.html

[cougie23 23]

http://salicylatesensitivity.com/about/food-guide/

http://everydaywithadhd.createyouroutcome.com.au/user-assets/Info_Sheets/Salicylate_Food_Chart.pdf

http://www.mysensitiveskincare.com/salicylate-free-diet.html

http://www.foodsmatter.com/allergy_intolerance/salicylate/articles/salintol.html

OMG ....You poor people!

Like celiacs wasn't bad enough!...

I was wondering what all this talk about sals was....OMG...I'm sorry I asked!

I don't EVEN want to KNOW if I have these sensitivities!And I scratch myself BLOODY RAW....especially in my sleep! I'm still trying to deal with the celiacs..caisen...semi-soy(I'm still in denial on that one) and don't forget NIGHTSHADES! Ladies...you HAVE my sypmathies!

By the way...anyone ELSE break out in little redpinpricks....My Dr.can't figure it out...and noone HERE has heard of that one...so far! I've had THAT problem for years...even had a thread on it...no luck! It runs on my Dads side of the family...(he is a undiagnosed Celiac in denial!)

[squirmingitch 629]

What foods are high in sals? I'm eating almost nothing now. I have only had bananas, almonds, cranberries and I tried eating chicken last nite. THATS IT! I cut out soy a weeks ago...the reason I think its candida is because 1. I seemed to get a yeast infection at the same time my dh started getting worse. 2. When drink kefir w/ raw milk I only got new sores when glutened. I was eating tons of iodine with no reaction but get a reaction to the slightest amount of iodine now. 3. All the foods that exaggerate candida also exaggerate dh. I'm gonna try to get rid of this candida and see if anything changes. If not I will try the low sals diet.

You are eating Almonds --- high sals, cranberries --- high sals. You could go on the failsafe diet (minus the gluten foods) & eat more things than you are eating now. And it eliminates things that are irritants. Scroll down a little way & you will see a food chart. it also tells you about personal hygiene items & such.

You say you are using shea butter & apricot scrub --- apricot is high sals. I don't know about the shea butter. You didn't say which shea butter & apricot scrub you use --- BRAND? Check them for gluten & sals.

http://www.celiac.com/gluten-free/topic/78246-johnson-and-johnson/

http://celiacdisease.about.com/od/GlutenFreePersonalCareProducts/a/Gluten-In-Shampoo.htm

http://vickie-ewell.suite101.com/how-to-choose-true-gluten-free-shampoo-products-a253425

[pricklypear1971 355]

OMG ....You poor people!

Like celiacs wasn't bad enough!...

I was wondering what all this talk about sals was....OMG...I'm sorry I asked!

I don't EVEN want to KNOW if I have these sensitivities!And I scratch myself BLOODY RAW....especially in my sleep! I'm still trying to deal with the celiacs..caisen...semi-soy(I'm still in denial on that one) and don't forget NIGHTSHADES! Ladies...you HAVE my sypmathies!

By the way...anyone ELSE break out in little redpinpricks....My Dr.can't figure it out...and noone HERE has heard of that one...so far! I've had THAT problem for years...even had a thread on it...no luck! It runs on my Dads side of the family...(he is a undiagnosed Celiac in denial!)

Cougie, do you really want one of us to tell you about your little red pinpricks? Because we'll tell you to start reading the DH forum...and point out things like iodine and sals....

And let's not get started on Dads. Yours, mine, and a few others are on a slow boat down DeNile (rashes and all).

[squirmingitch 629]

OMG ....You poor people!

Like celiacs wasn't bad enough!...

I was wondering what all this talk about sals was....OMG...I'm sorry I asked!

I don't EVEN want to KNOW if I have these sensitivities!And I scratch myself BLOODY RAW....especially in my sleep! I'm still trying to deal with the celiacs..caisen...semi-soy(I'm still in denial on that one) and don't forget NIGHTSHADES! Ladies...you HAVE my sypmathies!

By the way...anyone ELSE break out in little redpinpricks....My Dr.can't figure it out...and noone HERE has heard of that one...so far! I've had THAT problem for years...even had a thread on it...no luck! It runs on my Dads side of the family...(he is a undiagnosed Celiac in denial!)

Yup Cougie, you in big trouble now! WE know what those little red pinpricks are. Itching you say? My deah, you came to the right place. Welcome to the wonderful world of dh!

Ohhhh yeaaaahhhh, dad's & HUSBANDS!!!!! De ribber ob DeNile be a loooong ribber. I'm working on daming up that river in this household but it's going to be a long battle. Well, maybe not so long..... I'm getting help from DH & that's going to make my fight a whole lot easier!

[dani nero 50]

What foods are high in sals? I'm eating almost nothing now. I have only had bananas, almonds, cranberries and I tried eating chicken last nite. THATS IT! I cut out soy a weeks ago...the reason I think its candida is because 1. I seemed to get a yeast infection at the same time my dh started getting worse. 2. When drink kefir w/ raw milk I only got new sores when glutened. I was eating tons of iodine with no reaction but get a reaction to the slightest amount of iodine now. 3. All the foods that exaggerate candida also exaggerate dh. I'm gonna try to get rid of this candida and see if anything changes. If not I will try the low sals diet.

Drop the milk (and all dairy), because you've been gluten free for only three months and shouldn't be having dairy/ lactose. You can't digest them anyway.

Your problem might be candida, or it might be sals.. but it also might be both. My suggestion is to do a diet that takes care of both problems to avoid wasting your time. Start from basics. Eat only lettuce, carrots, celery, onion, garlic, sunflower or safflower oil, and all types of unprocessed meat for 7-10 days, and when you start feeling better, start adding back one food every three days.

Your diet seems high on salicylates. Read all the links posted to you by squirming.

Bananas, almonds cranberries and chicken were your food last night only.. I meant can you list everything you've been eating for the past two weeks, not just last night.

Also (silly question) but have you made sure you've decontaminated your house from all possible sourced of gluten to avoid cross-contamination?

Have you been reading around the forum? So much information on the boards for the grabs, but you need to do some reading of your own. When I first found out I had celiac I spent six weeks doing nothing but reading about it.

[dani nero 50]

OMG ....You poor people!

Like celiacs wasn't bad enough!...

I was wondering what all this talk about sals was....OMG...I'm sorry I asked!

I don't EVEN want to KNOW if I have these sensitivities!And I scratch myself BLOODY RAW....especially in my sleep! I'm still trying to deal with the celiacs..caisen...semi-soy(I'm still in denial on that one) and don't forget NIGHTSHADES! Ladies...you HAVE my sypmathies!

By the way...anyone ELSE break out in little redpinpricks....My Dr.can't figure it out...and noone HERE has heard of that one...so far! I've had THAT problem for years...even had a thread on it...no luck! It runs on my Dads side of the family...(he is a undiagnosed Celiac in denial!)

I'm sorry to say Cougie, but the "form" of your DH seems to be the same as mine. I don't get the big watery blisters, I only get little reddish ones.. and if I'm lucky and there's no itch with the blisters they can actually show up for a little over a day then disappear.. unless I itch them, which means they'll scab and scar.

It runs in my whole family, and they all have a NEED to blame it on stress alone, because if they did happen to listen to me it would mean having to giving up their precious food.

[cougie23 23]

Yup Cougie, you in big trouble now! WE know what those little red pinpricks are. Itching you say? My deah, you came to the right place. Welcome to the wonderful world of dh!

[Di2011 44]

What foods are high in sals? I'm eating almost nothing now. I have only had bananas, almonds, cranberries and I tried eating chicken last nite. THATS IT! I cut out soy a weeks ago...the reason I think its candida is because 1. I seemed to get a yeast infection at the same time my dh started getting worse. 2. When drink kefir w/ raw milk I only got new sores when glutened. I was eating tons of iodine with no reaction but get a reaction to the slightest amount of iodine now. 3. All the foods that exaggerate candida also exaggerate dh. I'm gonna try to get rid of this candida and see if anything changes. If not I will try the low sals diet.

I have not read throughthe whole thread yet but I just saw cramberries.. anything dried fruit has been bad for me!

[CeliacFashionista 1]

I've been spending HOURS reading everyday but there is so much to know. I can't spend more money on more groceries and throw away more food! I am a broke college student with a fixed income. This is killing me I seriously want to die everyday! I tried to do a water fast because I feel like that is a last resort but I lost so much weight in this first day and then my hair started to fall out! I can't lose anymore because I am underweight. These crazy elimination diets are STARVING me and breaking my pockets because I am constantly throwing out things I can't eat!!!!

[pricklypear1971 355]

Are you still taking prednisone? Are you still taking dapsone?

Prednisone can cause alopecia and neurological and emotional changes. http://www.drugs.com/prednisone.html

My DH would not heal using steroids - steroids can impair wound healing.

Have you considered drug interactions may be causing you issues? http://www.drugs.com/drug-interactions/prednisone.html

I understand where you're at. But you need to stop and think about what you're currently doing and how you might be able to tweak it to help your DH heal.

I also suggest you find someone to talk to about your emotional situation. If you are on pred that could explain your mental state. A responsible doctor would want you to wean off.

You need a complete work up to check for vitamin/mineral deficiencies also.

Are you sure you aren't getting into gluten? College life can be tough to navigate gluten-free, especially of you're eating at a cafateria, etc.

[CeliacFashionista 1]

I know that newly diagnosed celiacs are not supposed to drink milk but raw milk kefir is the only thing that has helped me feel any better. As soon as I stopped taking it is when thing started to get worse. I tried other probiotics and they don't help. I NEED a good probiotics something at least as good as raw milk kefir and I have found nothing. Raw milk has the enzyme in it to help digest the lactose. I dnt have any problems after drinking it. Everything seems to get worse when I take out things for this DH diet. But my dh only gets slightly better.

[pricklypear1971 355]

I know that newly diagnosed celiacs are not supposed to drink milk but raw milk kefir is the only thing that has helped me feel any better. As soon as I stopped taking it is when thing started to get worse. I tried other probiotics and they don't help. I NEED a good probiotics something at least as good as raw milk kefir and I have found nothing. Raw milk has the enzyme in it to help digest the lactose. I dnt have any problems after drinking it. Everything seems to get worse when I take out things for this DH diet. But my dh only gets slightly better.

Are you making or buying your kefir?

Have you considered water kefir? You can use the pearls in water.

The only problem with milk is the iodine, if you are iodine sensitive. Or if you can't digest the milk....you can handle the milk but the iodine may be an issue.

[CeliacFashionista 1]

I am off Prednisone for 2 weeks now but I am seriously thinking about getting back on it because my skin is so bad right now. My dh is most serve on my FACE so I cannot risk it getting worse and scarring. I need something to work! I am going to just try what I was doing before because trying all these diets is driving me crazy and it has not completely gotten rid off the problem yet. I know pred is not safe but neither is the way this dh is making me feel. I honestly dnt even care if this pred. kills me I just want to be able to have a normal looking face again! Yes I make my own kefir it isn't store bought. I dnt know where to find water kefir and I do not have any more time to wait on a delivery. I do not eat at a cafeteria I cook all my own food. I have class tonite and I do not even want to go because the dh has gotten so bad. I need something that will clear this up by mon. I cannot keep trying to take foods out and then break out AGAIN! I need to be normal so that i can live my life again and get things done.

[dani nero 50]

I am off Prednisone for 2 weeks now but I am seriously thinking about getting back on it because my skin is so bad right now. My dh is most serve on my FACE so I cannot risk it getting worse and scarring. I need something to work! I am going to just try what I was doing before because trying all these diets is driving me crazy and it has not completely gotten rid off the problem yet. I know pred is not safe but neither is the way this dh is making me feel. I honestly dnt even care if this pred. kills me I just want to be able to have a normal looking face again! Yes I make my own kefir it isn't store bought. I dnt know where to find water kefir and I do not have any more time to wait on a delivery. I do not eat at a cafeteria I cook all my own food. I have class tonite and I do not even want to go because the dh has gotten so bad. I need something that will clear this up by mon. I cannot keep trying to take foods out and then break out AGAIN! I need to be normal so that i can live my life again and get things done.

You really sound stressed, and stress will make things worse for you. Many people with DH have expressed that stress can provoke their DH when it's active, making it a lot worse, so try to relax. It's always better take it a step at a time.

I know you want this to stop, and you want it to stop now, but believe me it will get better, and we are all going to see this through with you until you start feeling better. These thoughts of wanting to die are probably caused by the reaction you're having as well, so keep in mind that these negative thoughts are not your own, but your illness speaking.

I'm sadly the least experienced, but I know that are others who will have amazing advice for you.

Have you talked to tutors by the way? You have to explain to them (before you start missing too much on class assignments) that you might need some extra time.

Explain the problem, and try to find others who have celiac at your uni. They might have good suggestions on food and money issues.

[pricklypear1971 355]

You can convert some of your milk kefir grains to water. http://marly67.wordpress.com/2010/03/05/converting-milk-kefir-grains/

They suggest buying water kefir grains, but you can use the milk and stay on budget. There are plenty of sites out there about making water kefir and recipes.

How long did you wean off the pred? Are you on dapsone?

I don't know of anyone who hasn't broken out after stopping pred.

If you felt better and your DH was better on another eating regimen then I'd say go back to it. But I seriously doubt anything will make DH go away in 3 days. It may start to heal but it won't be gone.

Perhaps when the semester is over you can look at a few things that may help the DH. You'd have more time. Perhaps you should start incorporating some low sal foods in to your shopping during your regular shopping trips? When it's time to buy new skin/hair care ensure they are low sal/gluten-free?

[cougie23 23]

But Dani.... they're not blisters....just literally pinpricks....and totally randon!for no reason at all....they just start popping like crazy starting on my arms and then all over my stomache...then EVERYWHERE! they don't itch....but It feels like a million microscopic blood vessels breaking...like a breeze...running over my body....and i'm covered in pinpricks! It's SO weird! they usreally fade away...or turn into freckles!!!

I have a lot of freckles because of this!!! Sometimes they're bigger...like blood blisters...but they NEVER pop or ACT like bloodblisters!Its most lickly to happen when its hot...or I'm in the SUN...or its windy...or I'm upset! But LOTS of times its JUST RANDOM! And nobody has EVER been able to give me a straght answer!

[pricklypear1971 355]

But Dani.... they're not blisters....just literally pinpricks....and totally randon!for no reason at all....they just start popping like crazy starting on my arms and then all over my stomache...then EVERYWHERE! they don't itch....but It feels like a million microscopic blood vessels breaking...like a breeze...running over my body....and i'm covered in pinpricks! It's SO weird! they usreally fade away...or turn into freckles!!!

I have a lot of freckles because of this!!! Sometimes they're bigger...like blood blisters...but they NEVER pop or ACT like bloodblisters!Its most lickly to happen when its hot...or I'm in the SUN...or its windy...or I'm upset! But LOTS of times its JUST RANDOM! And nobody has EVER been able to give me a straght answer!

That sounds like hives. Except the freckling part. Hives can be caused by anything/nothing. There are heat hives, cold hives, pressure hives, stress hives....do antihistimines help?

Maybe you should put this on another thread, Cougie...dovit can get more attention.

Oh wait! Lookie! http://www.bad.org.uk/Portals/_Bad/Patient%20Information%20Leaflets%20(PILs)/Urticaria%20Pigmentosa%20Update%20Jan%202012%20-%20lay%20reviewed%20Oct%202011.pdf