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Help! Please!


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122 replies to this topic

#16 Di2011

 
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Posted 26 April 2012 - 03:04 AM

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!
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#17 CeliacFashionista

 
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Posted 26 April 2012 - 10:13 AM

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!!!!
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#18 pricklypear1971

 
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Posted 26 April 2012 - 10:32 AM

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...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.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#19 CeliacFashionista

 
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Posted 26 April 2012 - 10:33 AM

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.
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#20 pricklypear1971

 
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Posted 26 April 2012 - 10:36 AM

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.
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#21 CeliacFashionista

 
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Posted 26 April 2012 - 11:20 AM

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.
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#22 dani nero

 
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Posted 26 April 2012 - 11:44 AM

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.
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#23 pricklypear1971

 
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Posted 26 April 2012 - 11:44 AM

You can convert some of your milk kefir grains to water. http://marly67.wordp...k-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?
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#24 cougie23

 
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Posted 26 April 2012 - 11:50 AM

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! :blink: And nobody has EVER been able to give me a straght answer!
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Cougie23
Diagnosed 8/3/11
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#25 pricklypear1971

 
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Posted 26 April 2012 - 11:55 AM

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! :blink: 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.u... Leaflets (PILs)/Urticaria%20Pigmentosa%20Update%20Jan%202012%20-%20lay%20reviewed%20Oct%202011.pdf
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#26 CeliacFashionista

 
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Posted 26 April 2012 - 12:01 PM

I will try converting my milk kefir grains...I did not realize you could do that Thank you! I am VERY stressed. This is my last quarter. I graduate in June and I have no idea where I will work. I cannot get a job with my face like this. My degree is in FASHION!!!! We do not have any type of meal plan or anything at my school.
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#27 dani nero

 
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Posted 26 April 2012 - 12:12 PM

I will try converting my milk kefir grains...I did not realize you could do that Thank you! I am VERY stressed. This is my last quarter. I graduate in June and I have no idea where I will work. I cannot get a job with my face like this. My degree is in FASHION!!!! We do not have any type of meal plan or anything at my school.


You HAVE to communicate with your tutors and see what they have to say. They will not be understanding with you if your progress simply falls behind, but they will be very supportive and maybe even be able to offer some advice regarding your studies if you put them in the picture.

So talk to your tutor as soon as possible. I'm studying illustration and it's the same type of work and pressure as your major, so I do understand your stress. Remember, one step at a time. If you tackle everything at once things won't go so smoothly. Focus on the tasks that are most important first, and just keep in mind that if you keep stressing you won't get much done. Relax, and you'll produce. You'll figure things and hopefully your face will clear up before it's time to get a job, so don't worry about that for now. Worry about getting better, and about your studies.

Prickly's shopping suggestion was a good one. If you have any foods you've not opened yet and you have the receipts you can always try changing them for something else.
Berries and fruits except for pealed pears will provoke your DH. I know this will sound a little gross but chicken wings are not very expensive and they're quite fatty. I had a friend who wanted to gain weight so ate chicken wings with rice. Rice is also cheap.
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#28 pricklypear1971

 
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Posted 26 April 2012 - 12:14 PM

Okay, I saw where you tried dapsone and got a rash. I'm betting your allergic to that class of drugs. Did you talk to the doc about other DH regimens? There are a few other treatment protocols.

http://emedicine.med...640-treatment#1
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#29 CeliacFashionista

 
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Posted 26 April 2012 - 12:23 PM

I am emailing my teacher now to let him know my situation. My other teacher is already aware. I have a bunch of chicken and rice! But I cant eat that all day! I need something I can take with me on the go. I usually eat bananas when I'm on the run and I eat kale and broccoli for greens. I guess I can finish up the last of bananas and buy a few pears instead. However bananas don't cause we to break out no matter how many I eat.
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#30 dani nero

 
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Posted 26 April 2012 - 12:42 PM

I am emailing my teacher now to let him know my situation. My other teacher is already aware. I have a bunch of chicken and rice! But I cant eat that all day! I need something I can take with me on the go. I usually eat bananas when I'm on the run and I eat kale and broccoli for greens. I guess I can finish up the last of bananas and buy a few pears instead. However bananas don't cause we to break out no matter how many I eat.


Here is a list of fruits that are ok (ranging from none to low amount of sals):

Banana
Pealed Pear
Lime
Apple – golden delicious
Nashi Pears
Papaya
Paw Paw
Tamarillo

Broccoli is sadly high on sals so you don't want to buy that anymore.
As for veggies (also from none to low amount of sals):

Bamboo Shoots
Beans (dried – not borlotti)
Cabbage (green or white)
Celery
Green Split peas
Lentils (brown)
Lentils (red)
Lettuce (iceberg)
Peas (dried)
Potato (old/white and peeled)
Swede
Bean Sprouts
Borlotti beans
Brussels sprouts
Cabbage – red
Cauliflower
Chickpeas
Chives
Choko
Fresh Asparagus
Green Beans
Green Peas
Leek
Mung bean sprouts
Onion
Potato (white with peel)
Shallots
Yellow split peas

and veggies with medium sals, meaning you have to eat them in moderation:

Asparagus – tinned
Aubergine – peeled
Beetroot
Black Olives
Canned Asparagus
Carrot
Fresh Tomato
Frozen Spinach
Lettuce (other than iceberg)
Marrow
Mushrooms
Parsnips
Potato (new and red Pontiac)
Pumpkin
Snow Peas
Sprout
Sweet corn
Turnip

Beware though that you should avoid any beans, mushrooms, and cauliflower if you want to go on candida diet as well as sals.

As for the rice, you can have rice one day, potato another day, and so on. You can even try brown rice as a third alternative since it has a different flavor and consistency from white rice so it won't feel the same. Just make sure that the rice you're buying isn't mixed with barely or some glutenous grain.

If you're short on time make a large batch and then pack a small lunch every day with a fork. I know repeating what you eat is tedious, believe me I've gotten so sick of what I eat because I can count the things I eat on my fingers, but it's something you might have to put up with for a short while for the sake of feeling better.
If you get really bored of the repetitive foods, just post all the things you can eat on a forum post and ask for recipe suggestions. You'll get flooded with amazing ideas :-) and I speak from experience!
  • 1
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD




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