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Just Found Out


Guest JlazyH

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Guest JlazyH

Hello, I just found out I have C/D. I'm am scared to death. Is there a Colorado group I need to ask questions in or is here ok?

Jess


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KaitiUSA Enthusiast

Welcome to the board :D

You can ask any questions that you have on this site. A support group would probably help you out to but this is an awesome resource of information that is invaluable.

The people on here are supportive and knowledgable and no question is stupid to ask.

MySuicidalTurtle Enthusiast

Open Original Shared Link

That is a thread on support groups in Colorado. However, feel free to use this whole forum for questions and resources.

elonwy Enthusiast

Welcome. I'm in Los Angeles, but I've only known about celiac disease for a month and been gluten-free for two weeks.

The bad news is - its really scary, and overwhelming and huge.

The good news is - the people here are awesome, and talking on this web site has made my life so much easier and allowed me to put so much in perspective. And its only been two weeks and people are remarking that I look healthier and I feel SO much better.

So come back - talk- laugh - cry.

You're safe here.

Elonwy

Guest JlazyH

Thank you all for the warm welcome. Just this last May I had rods/hardware put in my back. A few months before I started loosing weight. In 5 months I have gone from 175 down to 122. After all the testing for weight loss, they did the scope thing and found I have celiac disease. I am franticly trying to understand diet and all that needs to be changed. At this point I still don't fully understand celiac disease, but what I have learned so far I'm not a happy camper. I have lost so much weight the screw heads in my back have gone threw the back muscle and are close to comming threw the skin. Can't take out the hardware until sometime in December. One of my questions is when I get the diet under control, how long will it take to start putting on weight? Is there anything food wise I can be eating to help this along? One last question for now is, does anyone have trouble with itching from celiac disease, or is that something else that isn't related? I feel very blessed that I found this site and all of you. Oh, so you know who you are talking to, I am a 58 year old male, and my name is Jess.

Thanks for being here,Jess

KaitiUSA Enthusiast

Yes, itching can come with it...do you get any bumps with it? That can actually be DH which can come with celiac if you get like a bumpy rash with it.

Also, for me I started putting on weight after a few months being gluten free. It takes some time for symptoms to go away and intestines to heal and everyones time range for healing is different. It all depends on how much damage is done, age, and so forth. So don't expect an overnight change.

Some celiacs can't handle milk until the intestines heal but one thing that is good for calories is Ensure Plus. Always chill it before you drink it because otherwise its pretty nasty. My fav. kind is Butter Pecan.

It's not a bad change. There are many great things we can have. Sure there are some pretty nasty things but you'll learn the great brands and what to look for. It may seem overwhelming at first but it really is a normal part of life and pretty easy when you get used to it.

Guest zipy

If you're okay with milk, then Blue Bunny ice cream, they'll tell you right on the package about the wheat products... (I've been eating that all week). All of your meats are pretty much okay as long as they don't add anything (ie broths) Tyson chicken enhanced with broth is Okay, just called. Most of your name brand candy is okay...m&m's, snickers, just read the label. Coke is okay, and mug rootbeer, cheetos, fritos, lays potato chips (most of them)...any other fattening junk foods????

Avacados are naturally fattening...yummy yummy with a little salt on them. Bananas also, with peanut butter (name brand, again). Eggs w/ chorizo in the morning on a corn tortilla, yummy again.

You could put a pot roast in the crockpot with salt and pepper in the morning and be home after work and have that...very rich...with some potatos. No milk in that if you're sensitive.

Mc'D's fries and milkshakes...that'll do it too!

These are some of my favorite foods that I've been eating this week! I'm in the same boat as you...I'm loosing lots of calories and I'm trying to just stay where I am.

Good luck,

~Erin


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Guest JlazyH

Kaiti and Zipy :D

tarnalberry Community Regular
Hello, I just found out I have C/D. I'm am scared to death. Is there a Colorado group I need to ask questions in or is here ok?

Jess

<{POST_SNAPBACK}>

Welcome to the board!

Feel free to ask all the questions you like - there are a lot of very helpful, well-informed folks on the board. It seems scary at first, but with time, the gluten-free diet will become easier.

While you're getting used to the diet, and trying to put on weight, I would encourage you to stick to whole, naturally gluten-free foods for which you don't need to worry about cross-contamination. High caloric-density foods will help you put on weight as well, so put plenty of olive oil on those veggies, coconut milk in a smoothie, and avocado with your salad - and some nuts for a snack!

Jnkmnky Collaborator

Open Original Shared Link

You can get great breads at kinnikinnick. Their bagels are pretty high calorie. Have them in the morning with eggs and bacon and butter or cream cheese, etc. They also make great white bread, pizza crusts, and donuts. You don't want to skip the carbs and go all Atkins. That will not help you gain weight.

Open Original Shared Link

We use Chebe in a variety of ways. One is to make chebe balls and butter them to go with soups and stews. We also make Hot pockets and pizza stix. Chebe is really easy to prepare. Along the lines of Bisquick *which is NOT gluten free, of course!

Tinkyada pastas are the best pasta. Classico sauces are gluten free and they make a creamy alfredo that is fattening. You can get Classico sauces at your regular shopping store. Velveeta cheese is gluten free for mac and cheese.

Good luck. Have fun eating!

nettiebeads Apprentice

I, unfortunately, did not get the weight loss manifestation of this disease. One thing I have found that is recommended is to go high protein in your diet. It will help with your energy levels. And the flours used in place of wheat flour are denser and therefore higher in calories. All of the advice given here is from experience. This is an autoimmune disorder that affects each person differently as we all have a different physiological makeup. Good luck and keep us posted.

Guest JlazyH
If you're okay with milk, then Blue Bunny ice cream, they'll tell you right on the package about the wheat products... (I've been eating that all week).  All of your meats are pretty much okay as long as they don't add anything (ie broths)  Tyson chicken enhanced with broth is Okay, just called.  Most of your name brand candy is okay...m&m's, snickers, just read the label.  Coke is okay, and mug rootbeer, cheetos, fritos, lays potato chips (most of them)...any other fattening junk foods????

Avacados are naturally fattening...yummy yummy with a little salt on them.  Bananas also, with peanut butter (name brand, again).  Eggs w/ chorizo in the morning on a corn tortilla, yummy again. 

You could put a pot roast in the crockpot with salt and pepper in the morning and be home after work and have that...very rich...with some potatos.  No milk in that if you're sensitive.

Mc'D's fries and milkshakes...that'll do it too!

These are some of my favorite foods that I've been eating this week!  I'm in the same boat as you...I'm loosing lots of calories and I'm trying to just stay where I am.

Good luck,

~Erin

<{POST_SNAPBACK}>

Don't we need to watch McD's fries? If the nuggets are fried in the same grease I would be in trouble.

Jess

Guest zipy

According to their website they're in a separate fryer. They're listed as a gluten-free item:

Open Original Shared Link

Yipee skippy for us!

Erin

Guest nini

Welcome to the board Jess... I've been gluten-free a little over 2 years now and it gets easier. Since you need to put on weight you really have no limitations on what you can eat as long as it's gluten-free.

For breads I'll have to second the motion that Kinnikinick has the best breads, bagels, donuts, etc... they've even got great gluten-free cookies. I love the Montana Chocolate Chip ones, tastes like Chips Ahoy to me! Tinkyada has the best gluten-free pasta, and Chebe bread is awesome for a number of things. I also use it to make hot pockets, calzones, breadsticks, and cheese balls to have with spaghetti. Classico Pasta Sauces are all gluten-free and delish, I love avocados and cream cheese on a kinnikinick sesame seed bagel (toasted)

I unfortunately was one that gained weight on gluten, so I'm having to watch my calorie intake now, but still, as long as I stay gluten-free, my body seems to be regulating itself better and the weight is just falling off now.

I would suggest to you that you just find anything and everything that you like to eat and find a good gluten-free substitute for it. Whenever you start to feel deprived, look at what you can have! There is a lot!

Guest JlazyH

Life is starting to look a bit better now. I just made myself a loaf of the kinnikinick bread and I am now putting together a pan of Chocolate Truffle brownies. Last night I made peanut butter cookies from a flyer the doctor gave me. The thing that is so cool is my wife and youngest son (27) say they like it all as much as the things they can eat too. I want to thank you all for the warmth you have shown in helping me out in the start up of my new life.

Jess

  • 2 months later...
CeliacMe Rookie

Hi, I am new to celiac disease too. I get all types of DH on my scalp from shampoos and conditioners that contain wheat/oat products. I can't use a lot of salon shampoos because of this. It is very itchy, like dandruff, so yes I believe itching is normal if you are celiac disease. Maybe your soaps and shampoos have a gluten ingredient in it? You may want to check you can read the label or contact the food manufacturer. If you are okay with milk you can have Ensure- I like the high protien vanilla flavor. You are safe with a plain meat with basic seasonings (check seasoning mixes like KC masterpiece have "modified food starch" in it. Or you can just cook plain meats with a little olive oil and herbs, potatoes (homeade mashed are okay) I just add milk and butter like normal- I contacted my local grocery store (publix) and they sent me a list of their gluten-free products. Also walgreens has a list of gluten-free products (pretty much all their store brand OTC stuff is gluten-free) You can go to walgreens.com to get the list. Anyway, I use publix's store brand butter and sour cream. And then you can have steamed veggies, I put butter and garlic on mine. Ingredients to watch out for: modified food starch, maltodextrin, dextrin, anything that says "malt", some vinegars (contact manufacturer), caramel color (can be made from barley-contact manufacturer). Pretty much all low fat or fat free dairy you gotta watch out for, they water it down and add thickeners which could be wheat based. If you are in doubt about a packaged food then don't eat it until you contact the manufacturer. Also, chick fil a has gluten-free stuff on their site (chargrilled chicken salad). Outback Steak House, Legal Sea Food, and PF Changs have special gluten free menus. If you eat out somewhere you can call ahead of time, a lot of resturant managers know about this. There is a brave man in Tallahassee, FL who goes to all of the hospitality school's dinners and is known as "gluten guy". He educates the future resturant managers about gluten-free.

Your best bet is to eat plain stuff that you know is okay (plain basic ingredients or things made at home from scratch that you know are safe) and order online if you don't have a whole foods by you, you can order snacks or check out your local health food store for things that are labeled "gluten free." I've been gluten-free since July and I know that learning about this stuff is exhausting. Also, Glutano makes really good stuff, I love their pretzels! You might want to check them out. Ener-g also makes a non-frozen bread that is okay if you microwave right before eating.

Paul-Bunyon Newbie
Life is starting to look a bit better now. I just made myself a loaf of the kinnikinick bread and I am now putting together a pan of Chocolate Truffle brownies. Last night I made peanut butter cookies from a flyer the doctor gave me. The thing that is so cool is my wife and youngest son (27) say they like it all as much as the things they can eat too. I want to thank you all for the warmth you have shown in helping me out in the start up of my new life.

Jess

<{POST_SNAPBACK}>

Many peanut butters are also gluten free, FYI.

cornbread Explorer

I believe maltodextrin is made from corn. Confusing cos malt is barley and dextrin is wheat, but maltodextrin is gluten-free. Weird name, but safe. :)

  • 3 months later...
Guest larry

Elonwy,

I agree with you so much. If it weren't for all the kind people on the boards, it would be very hard to adjust.

jerseyangel Proficient
Elonwy,

I agree with you so much. If it weren't for all the kind people on the boards, it would be very hard to adjust.

Hi Larry--Just catching up on the new posts and I see you've joined us. Welcome in :)

  • 1 year later...
cybermommy Newbie

Jess,

Hang in there. You have to start by healing your gut. You can't gain if you can't absorb it. You should be pretty well healed by now, if you have managed to stay gluten-free. Next nutrients: Here a balanced diet will help you. Be sure you get foods from all groups. You may also want to add a gluten-free multivitamin. Nut butters are high calorie & usually are consumed w/ carbs (also calorie packed). Have you tried nutella?

It is a hazlenut & chocolate spread. I take Mi-del arrowroot animal cookies & dip in the nutella. :P Yum! If that doesn't add weight nothing will.:) Why not indulge your inner child? :lol:

One of the things that helped me most was that someone gave me a list of brand name stuff, in regular stores that is gluten-free. So here are a few to get you started:

Great Value brand (Wal-Mart) They clearly label foods as Gluten-Free (If it is manufactured in facility w/ gluten containing products, they will not label it gluten-free)

Hidden Valley Dressing (they only have 3 products that contain gluten & will give list if you call-sry I don't remember the ones I would not normally use) Original Ranch, Peppercorn Ranch & Spicy Ranch are all ok (I use them)

Kozy Shack rice pudding, tapioca pudding & "jello" are ok & are labelled gluten-free

Fritos any flavor

Jet Puff marshmallows

Skittles any flavor

M&Ms (except for crunchy)

Banquet Chicken Selections Herb, Oven Roasted & Grilled (these are precooked frozen)

Cereals: Trix, Dora cinnamon stars, Little Einsteins fruity stars, Cocoa Pebbles & Fruity Pebbles

Welch's Fruit Snacks

Mott's apple sauce (any variety of fruit sauce)

McCormick spices (clearly labeled-doesn't hide behind "natural flavors", "spices", etc) If it is in there they will say it, so be sure you read the label.

I don't know if you have a Brookshires where you live, but they have just started carrying organic foods. Fortunately many of our gluten-free foods are organic. They even carry Tinky'ada pasta & Blue Diamond Nut Thins. The only things I didn't find there were the cookies & frozen breads.

FYI: Don't forget that while oat does not actually contain gluten, the protein in it is so closely related that many celiacs' bodies recognize it as gluten & will react.

I feel for you. My spine is put together w/ rods, screws & bone cages. I am a walking hardware store. ;) You must be very uncomfortable w/ the screw heads like that. :blink: Hope you will have a speedy recovery.

Good Luck & God Bless You,

Deb

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