New To Celiac And Forum

[Burnsie]

Hi everyone,

I was diagnosed with celiac on friday and have gone Gluten free ever since.

I was fatiqued all the time and my joints were hurting more than usual. I also have Osteo Arthritis, Fibromialgia, TMDJ, and the list goes on....

I started to feel better monday and part of tuesday. I get up today and felt like my old crappy self again.

So I checked into everything I ate yesterday and found out the ranch dressing used in the cafeteria at work is not gluten free..

So I learned a valuable less, all ranch dressings are not created equally..

I will spend a lot of time here reading, reading and reading!!!

Karen

[love2travel]

Welcome here! You will find we are a very interesting and varied bunch indeed. Many folks are so knowledgable and helpful. I was diagnosed nearly 1.5 years ago and in the first month of my diagnosis I learned more here than from any other source put together. Heck - that still applies! This journey we are on is a process, not to mention a ginormous learning curve!

Hopefully your symptoms will rapidly decrease and you feel better very soon.

[Adalaide]

Welcome! That's great that you noticed you started to feel better so soon. Not everyone has a noticeable improvement that quickly. Don't worry about little mistakes like that as you get started. You'll make them, we all did. Just vow not to make it again and move on. A great read is this thread which has lots of valuable information for people just getting started. Not only are not all ranch dressings not created equally, not all of anything are. I think everyone's life motto is "every label, every time." Or maybe "when in doubt, leave it out." And, I'm about to rain all over your parade. It may simply not be safe to eat at your work cafeteria, at all. If you haven't already you'll want to be asking questions about CC and such to make sure you can even get a safe salad. (And if it's from a salad bar, it is not safe.)

Anyway, there's a lot to learn. It can be overwhelming so don't implode or anything. You don't have to memorize this stuff. (I shop with a 3-ring binder.) Take things a day at a time and feel free to ask whatever you need to here.

[Burnsie]

Thanks for replying. I have Lots of reading and learning to do..

[tom]

Hi Burnsie,

This may seem like a non sequiter but your avatar is making me go check Bahraini twitter of all things.

[1desperateladysaved]

Expect your body to be working on this for a long while. I am 3 months into grain free and I can tell my body is still working hard to recover. I had one week of bliss, when I went gluten free, followed by withdrawl symptoms. Don't be discouraged when you feel worse. You did the right thing, you found a cause and corrected the error! Sometimes you will never find it.

Keep up the good work and please get well soon.

DT.

[Azuremackey]

Hello Friends,

This is my first post but I have been reading and following along for several weeks. I have been diagnosed for just over 3 months. I was diagnosed via blood work, biopsy, then another biopsy, immunofluorescence biopsy and upper GI. LOL it has been quite a journey. I had DH so bad that I was initially diagnosed with scabies Treatment bombed, then Chicken pox , after 2 weeks of more pox breakouts my Doctor decided to do further testing

[Burnsie]

Hi Burnsie,

This may seem like a non sequiter but your avatar is making me go check Bahraini twitter of all things.

How do you feel about yorkies?

[tom]

Hehe cute pup! Certainly removes my desire for Bahrain twitter updates.

Curious about where other pic was from now.

[GFinDC]

Hello Friends,

This is my first post but I have been reading and following along for several weeks. I have been diagnosed for just over 3 months. I was diagnosed via blood work, biopsy, then another biopsy, immunofluorescence biopsy and upper GI. LOL it has been quite a journey. I had DH so bad that I was initially diagnosed with scabies Treatment bombed, then Chicken pox , after 2 weeks of more pox breakouts my Doctor decided to do further testing… WOW what a concept! I was tested for everything except DH. I was told it was pustular psoriasis, put on prednisone and an allover body lotion (that burned off the tops of the blisters and left me raw from head to toe) and referred to a dermatologists. My first skin biopsy that came back with 3 possible autoimmune diseases bullous pemphigoid ( this is typically found in people over the age of 60 I am 35), DH and another that did not fit the symptoms. My doctor started treating me for the pemphigoid because he did not believe that DH could be as bad as mine. I obviously did not stay clear soon after prednisone was completed I was covered in DH again. I was lucky to have a good dermatologists but it took several months to get to the proper diagnosis. While DH is HORRIBLE I am almost thankful for it as I have also had severe intestinal issues for about 7 years but I was always told it was stress, IBS etc… I just learned to live with it. Im sure I'm preaching to the choir with all of this!! Since my diagnosis I am 100% gluten-free and I have taken the Dapsone treatment for 30 days once with some relief. gluten-free has equaled almost a total reversal in my intestinal issues and that is a huge blessing but my DH is still reoccurring. The biggest relief is that new breakouts start and end within 3 days and are on a much smaller scale. I am struggling to eat anything other than Cheese, meat, rice, Kale, bananas and red potatoes but have still not gotten my DH under complete control. I'm struggling to consume more than 600 to 800 calories a day. I NEED ADVICE!!! I am just at a loss as to what a normal diet for a person with celiac and DH of the "most severe sensitivity " is supposed to consist of. I have replaced all of my dishes, deep cleaned my kitchen, I am also the only person that I allow in my kitchen just to be sure there is no cross contamination. I am willing to try just about any new food and food combination to get this under control. I am open to any and all suggestions.

Thank you for any advice!

Hi,

People (posters here) with DH often say their rash flares when they get iodine in their diet along with gluten. So they avoid iodine in their diet, especially if they are having a DH flare. You do need iodine for your thyroid to function correctly, so you should not eliminate it all the time. But your body can store some amount of it, so you don't need it every day. You may be able to have it when things are going well and your DH is not flaring.

Since you are getting over a bad flare though, it would be good to avoid all iodine for a while, and stick to a very clean gluten-free diet. That would be a diet with nothing but whole foods you cook yourself at home. No restaraunts or processed foods. I think fish is considered bad as it has iodine in it. There are also some vegetables to avoid. Someone may come along with more info for you, or you could start a new thread for your situation. There are people much smarter than me about DH on the forum who can help you. Welcome to the forum though!

[GF Lover]

Hi and Welcome

My two toy yorkies love your yorkies pic.

[Azuremackey]

Hi,

People (posters here) with DH often say their rash flares when they get iodine in their diet along with gluten. So they avoid iodine in their diet, especially if they are having a DH flare. You do need iodine for your thyroid to function correctly, so you should not eliminate it all the time. But your body can store some amount of it, so you don't need it every day. You may be able to have it when things are going well and your DH is not flaring.

Since you are getting over a bad flare though, it would be good to avoid all iodine for a while, and stick to a very clean gluten-free diet. That would be a diet with nothing but whole foods you cook yourself at home. No restaraunts or processed foods. I think fish is considered bad as it has iodine in it. There are also some vegetables to avoid. Someone may come along with more info for you, or you could start a new thread for your situation. There are people much smarter than me about DH on the forum who can help you. Welcome to the forum though!

Thank you very much for the warm welcome and your advice. Because of the severity of the DH I was put on a very limited diet by my doctor 3 months ago. I've eliminated almost everything in my diet... on the short list i can have ; water, kale, red potatoes, rice, meat, limited cheese, cabbage, brussel sprouts, 2 bananas a week, some beans, some nuts, and iceberg lettuce. I have stuck to this diet without one slip no gluten, no iodine (that I know of), low SALS and lowered dairy for 3 months. I have lost 56 lbs in 3 months and i am getting close to a dangerous area where i have no appetite and still keep losing weight. I am on vitamin supplements mostly to fight the extreme fatigue and headaches. I am lost as to where to go from here with my diet. I am going to do more research on the SALS and iodine in foods.Maybe I am getting it from somewhere... Or Maybe this is just what my diet is going to be for the long haul!! Thank you again I will look deeper into the iodine thing.

[squirmingitch]

Azuremackey, the cheese is dairy & therefore iodine. There's part of your problem.

[squirmingitch]

Also potato skins are high iodine so you need to peel them deeply. Egg yolks are high iodine but you can seperate them & eat the whites only. You should be safe with cashews & hazelnuts & cashew butter but peanut butter is iodine mostly b/c of the skins. Sunflower seed butter is okay too. Loose the iodized salt & get plain non iodized salt & do NOT use sea salt --- sea salt is iodine. Celery is low sals, green beans, cabbage, saffron, peas, chives, ONLY golden delicious apples, peeled pears --- the sweet ones. I'm low iodine as well as low sals & am eating fresh chicken, beef, pork (not ham), rice, white peeled potatoes, celery, white acre peas, green peas, snow peas, sugar snap peas, green beans, pears - peeled, gol. del. apples, mangos, leeks, cabbage, chives, saffron, safflower oil, limited sweet potatoes, brussells sprouts, bananas, cashew butter, brown rice cakes (Lundsburg organic unsalted), egg whites, whole cashews, hazelnuts, bamboo shoots, instant decaf nescafe' coffee, instant decaf iced tea (or hot) & fresh turkey if it has no additives.

[GFinDC]

Ah good, smart person chimed in! Thanks Squirmy! AzureMackey, listen the the Squirm, she's got it going on.

And you are welcome! Feel free to ask questions, we like to help around here.

[squirmingitch]

You're making me blush GFDC!

You don't exactly have mush for brains yourself!

[GFinDC]

Ha ha Squirmy, well one point for me today then. Thanks for chiming in, it's great when someone who knows the ropes can help out!

[Azuremackey]

Also potato skins are high iodine so you need to peel them deeply. Egg yolks are high iodine but you can seperate them & eat the whites only. You should be safe with cashews & hazelnuts & cashew butter but peanut butter is iodine mostly b/c of the skins. Sunflower seed butter is okay too. Loose the iodized salt & get plain non iodized salt & do NOT use sea salt --- sea salt is iodine. Celery is low sals, green beans, cabbage, saffron, peas, chives, ONLY golden delicious apples, peeled pears --- the sweet ones. I'm low iodine as well as low sals & am eating fresh chicken, beef, pork (not ham), rice, white peeled potatoes, celery, white acre peas, green peas, snow peas, sugar snap peas, green beans, pears - peeled, gol. del. apples, mangos, leeks, cabbage, chives, saffron, safflower oil, limited sweet potatoes, brussells sprouts, bananas, cashew butter, brown rice cakes (Lundsburg organic unsalted), egg whites, whole cashews, hazelnuts, bamboo shoots, instant decaf nescafe' coffee, instant decaf iced tea (or hot) & fresh turkey if it has no additives.

Thank you very much!! I am doing many ( but not all!) of these things now and I will adjust my diet to fit the rest of these restrictions!! I will talk to my doctor about no dairy for some reason he wanted me to get a limited amount other than that this is all going to start now!!

[squirmingitch]

He probably wants you to get the calcium from the dairy but you can take non dairy, gluten-free calcium supplements. Celiacs often have problems with dairy at first anyway & have to cut it out for a while until their gut heals. I am actually drinking a little milk. I found a dairy near me who doesn't use iodine dip cups or spray the udders with iodine before milking. That's how a lot of iodine gets in the milk; & therefore butter, sour cream, cream cheese, cheese --- all dairy. Wait ---- here's a link & you can read all about how so much iodine gets in dairy:

https://www.celiac.com/forums/topic/89923-iodine-levels-in-dairy-products/

So I found a local dairy that grows their own feed (no iodine added) & only uses iodine AFTER milking in order to prevent mastitis in the cows & they clean the udders then before milking with a chlorine solution NOT iodine. I know their milk has far less iodine than what you get in the store. I drink about 1/3 glass with breakfast & am doing okay with that. You could check around your area & see if you can find the same. OR you could see about anyone with goats & use goats milk, butter, cheese if they do not use iodine & I believe they usually don't. I think goats don't have the problems with mastitis that cows have.

For low sals don't eat anything processed. I eat NO canned goods at all. No gluten-free processed foods. Only fresh or frozen (with no additives) fruits & veggies. No wine --- wine is high sals. If you have to drink then drink something like potato vodka.

Oh! You can also have some carrots but in limited quantities as they are medium sals on the sals list. So just limit your intake on those & sweet potatoes. Cocoa powder is okay too --- both low sals & no iodine. It isn't great but you can make hot cocoa with water & sugar. Sugar is fine to use. But no honey. Lyle's golden syrup is okay too. I am using gluten-free Bisquick for making pancakes but I make them with 1/2 water & 1/2 my "special" milk & use egg whites instead of a whole egg.