Newly Diagnosed

[Bellanovia]

On January 5th I had the upper GI biopsy performed and in February 7th was diagnosed. I won't lie, the Dr was rushed and didn't explain anything. The biopsy was somewhat inconclusive? I have no idea in what way. But with my symptoms and family history he was more then confident in the diagnosis ( not to mention I unintentionally started eliminating gluten high products by just eating more fresh). I have been left on my own to make sense of this. I am discouraged, frustrated and starting to feel very depressed. I went to a bakery that advertises themselves as gluten free..and the only gluten free products were frozen pre packaged items my bread selection was brown rice bread..and brown rice bread. I have been substituting some glistens that i Was eating easily. But I am still eating it. The switch is slow..and it feels like it will never fully happen. Not only do I need to stop eating it..but I have to eliminate cross contamination threats at home. My sister has been a great help..but I still feel totally consumed and overwhelmed. It doesn't help that my kids are suddenly 150 times more needy and I'm pregnant and my husband is out of commission from a surgery I wish my dr had been some help. I'm so hungry. But I don't know what to eat. And when I do eat anything with gluten I am in pain almost immediately. So I am confident in the diagnosis. Unfortunately annoying family members keep saying things like, " I was surprised you were diagnosed. You weren't nearly as bad as your sister". And I just want to cry. My sister was so much worse off then me yes..she was totally malnourished, and her body was shutting down. She was 80 pounds overweight, tired, sick, rashy. Since switching he is a different person. I had more IBS symptoms that I hve been making excuses for all my life. 15 plus bowel movements a day..that are emergencies everytime. Extreme stomach pain and cramping. And terribly sensitive skin. I just didn't tell anyone. So now they all seem to think (minus my sister) that I must not have it as bad. And until they have to run into a store carrying two fifty pound kid to use a dirty public washroom they just don't have the right to judge. I hope I am one of the few who can tolerate it in small amounts. But even now one piece of toast sends me into an attack.

Sorry this is so long winded.

I finally bought myself my own peanut butter and margarine. And my husband asked what I was going to put it on and I started bawling because I have no idea I don't know how to make bread ..or how to buy crackers. I am totally lost and drowning.

And I feel really dumb for bein this emotional about food. I am very fortunate it isn't serious

[dhd2000]

It is emotional, it's really mourning the way things used to be! And if you're pregnant, you have double the emotions going on. So give yourself a break. There's a learning curve and you'll make mistakes early on, that's ok. But you really do have to stop eating things like regular toast for your protection and your baby's protection. Stock your pantry/fridge with easy access items so that you can find something when you're hungry. Here are some easy ideas:

Rice chex

Snyder's Gluten free pretzels

Yogurt and cheese sticks

celery/carrots/cucumbers and ranch dressing

corn chips and salsa

Breyer's ice cream (most flavors)

Hormel chili with cut up hot dogs

van's or Trader Joe's gluten free waffles

Rice

Beans

frozen vegetables

meat - use your own seasonings

gluten free pasta

pop corn

rice cakes

boar's head or homel lunch meats

fruit!!!

loads of gluten free cookies available these days - I like Trader Joe's chocolate chip the best.

Try and find some things that you like and know that you won't have a lot of variety for awhile.

Hang in there, it does get easier!!!

Dee in NC

[Simona19]

First thing first: Welcome here!

I understand your situation -There is nothing to eat! Everything is made with gluten!- because I lived through it. I was lost at the beginning too. I couldn't even picture myself to make gluten free pancakes.

Now? Year and half later I'm cooking and baking without gluten and milk.

From the beginning eat gluten free things that you have been always eating.

Something like: grilled, baked chicken, fish, pork, beef, vegetable, spaghetti (just substitute pasta), mashed, cooked, baked potatoes, rice, fruit, cheese, hot-dogs, etc.

For breakfast, lunch: cereals, scramble eggs, sunny side or hard boiled eggs, egg salad, fruit, tuna fish salad, fresh salad with grilled chicken etc.

I will give you one important advice: Don't buy things that you never used before going gluten free. You wouldn't like them. It will just be a waste of time and money. I didn't listen and for a wail I was stuck with pantry full of things that didn't taste good. It took me long time to get rid of them.

You can check these posts to get some ideas what to eat (some of them are easy to make):http://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

https://www.celiac.com/forums/topic/87765-what-did-you-have-for-lunch-today/

https://www.celiac.com/forums/topic/75238-what-are-you-cooking-tonight/

I left out bread because that is the one thing that you can't replace, but you can come close to real thing. If you are in the USA, go to Whole food, Wegmans, or Trades Joe's where you can find bigger selection of gluten free breads, bagels, muffins, or buns.

If you can't, then check this:

https://www.celiac.com/forums/topic/85650-gluten-free-sandwich-bread/page__p__735949__fromsearch__1#entry735949

https://www.celiac.com/forums/topic/84873-simonas-braided-challah/page__p__729391__fromsearch__1#entry729391 .

https://www.celiac.com/forums/topic/85686-gluten-and-casein-free-hamburger-buns/page__p__736212__fromsearch__1#entry736212

Or just write what you are looking for in search engine and many recipes will pop up.

[Bubba's Mom]

On January 5th I had the upper GI biopsy performed and in February 7th was diagnosed. I won't lie, the Dr was rushed and didn't explain anything. The biopsy was somewhat inconclusive? I have no idea in what way. But with my symptoms and family history he was more then confident in the diagnosis ( not to mention I unintentionally started eliminating gluten high products by just eating more fresh). I have been left on my own to make sense of this. I am discouraged, frustrated and starting to feel very depressed. I went to a bakery that advertises themselves as gluten free..and the only gluten free products were frozen pre packaged items my bread selection was brown rice bread..and brown rice bread. I have been substituting some glistens that i Was eating easily. But I am still eating it. The switch is slow..and it feels like it will never fully happen. Not only do I need to stop eating it..but I have to eliminate cross contamination threats at home. My sister has been a great help..but I still feel totally consumed and overwhelmed. It doesn't help that my kids are suddenly 150 times more needy and I'm pregnant and my husband is out of commission from a surgery I wish my dr had been some help. I'm so hungry. But I don't know what to eat. And when I do eat anything with gluten I am in pain almost immediately. So I am confident in the diagnosis. Unfortunately annoying family members keep saying things like, " I was surprised you were diagnosed. You weren't nearly as bad as your sister". And I just want to cry. My sister was so much worse off then me yes..she was totally malnourished, and her body was shutting down. She was 80 pounds overweight, tired, sick, rashy. Since switching he is a different person. I had more IBS symptoms that I hve been making excuses for all my life. 15 plus bowel movements a day..that are emergencies everytime. Extreme stomach pain and cramping. And terribly sensitive skin. I just didn't tell anyone. So now they all seem to think (minus my sister) that I must not have it as bad. And until they have to run into a store carrying two fifty pound kid to use a dirty public washroom they just don't have the right to judge. I hope I am one of the few who can tolerate it in small amounts. But even now one piece of toast sends me into an attack.

Sorry this is so long winded.

I finally bought myself my own peanut butter and margarine. And my husband asked what I was going to put it on and I started bawling because I have no idea I don't know how to make bread ..or how to buy crackers. I am totally lost and drowning.

And I feel really dumb for bein this emotional about food. I am very fortunate it isn't serious

I completely understand your frustration! When I was DXed I was told "you have Celiac disease. Don't eat gluten. Look it up on the internet." Not even a sheet of paper telling me what gluten was..or the other names it goes by. We're told we have this serious condition..but we're on our own in treating it.

Your sister being Dxed before you is a blessing AND a curse..IMO. On the one hand, she may be able to answer some of your questions and give support, and on the other..you're being compared to her and feel that others may not be taking your Dx as being as serious? It's a serious disease, which is life changing. You're going to have times where you mourn the loss of foods you enjoyed.

Please don't eat gluten! You must be sure to remove all traces of it in your diet so your system can heal.

Try to stick to a mostly whole foods diet with plenty of fruits and veggies. Look for gluten free waffles(Van's) to put your peanut butter or margarine on. Be sure to get yourself a toaster dedicated to gluten-free.

King Arthur's gluten free flour is usually pretty easy to find in the regular flour aisle of the market. They have a bread recipe on the package that's easy and pretty good.

It's an adjustment, to be sure. We're here for you. If you have any questions..just ask. A lot of our eating has emotions tied to it. It's not unusual to feel emotional about food!

[Simona19]

I found the recipe with the KA flour

https://www.celiac.com/forums/topic/85254-perfect-gluten-free-whitesandwich-bread/ , but the flour is very expensive where I live, so I created the copy cat recipe for people that can

[Bellanovia]

I can't even begin to thank you for the suggestions/support/resources. I was in a really bad place yesterday and reading these replies have really helped to motivate me. I am still scared..but I feel a little more confident. We went shopping today and bought some bread yogurts, noodles, and tortilla wraps. The prices are astounding. But my husband is supportive thankfully.

Now..do we all have to go gluten free? We are investing in a new toaster and sterilizing what we do have. But how easily do we cross contaminate. How do we even sterilize? I clean everything with vinegar which I've been told had gluten..and baking soda too? Should I do orange peel cleaners? Or go get chemical cleaners? I was totally gluten free today and it was so nice not having constant pain. Though I still was a little crampy it was nice to have less intensity.

How do I properly clean out my 14 and 29 month olds mouths if they do have gluten. How badly will it hurt me if I forget or miss a spot

[Bubba's Mom]

Some people find it easiest to have the whole household gluten-free.

Stainless steel pans can be washed well and scrubbed. So can your dishes and glassware. You want to replace anything that's porous, like cutting boards, wooden spoons, plastic storage containers, colanders that are nearly impossible to clean well, toaster and can opener.

If you have any scratched non-stick cookware..toss it, or or keep it ONLY for gluten foods if you'll still be using them. Keep your gluten-free items seperate from anything that gluten will be used with.

Most vinegar is gluten free. Read the label. Vinegar or soda won't really affect how you clean items. They are better for cutting through grease or neutralizing PH. You aren't fighting germs here..it's tiny, miniscule molecules of protein you are trying to get rid of.

If your kids are eating gluten..it's tricky. An adult can brush their teeth well and use a rinse, but kids are different. They don't cooperate as well? Just be very aware of the possibility of their kisses/saliva being a source of CC?

The best way to go IMHO is to try to eat a mainly whole foods diet rich in fruits and veggies, and limit the gluten-free replacement processed foods?

You can bake your own breads and sweets if you want/need them. There are recipes all over. If you make your own it cuts down on the cost, and you know what's in it.

[kb27]

I can't even begin to thank you for the suggestions/support/resources. I was in a really bad place yesterday and reading these replies have really helped to motivate me. I am still scared..but I feel a little more confident. We went shopping today and bought some bread yogurts, noodles, and tortilla wraps. The prices are astounding. But my husband is supportive thankfully.

Now..do we all have to go gluten free? We are investing in a new toaster and sterilizing what we do have. But how easily do we cross contaminate. How do we even sterilize? I clean everything with vinegar which I've been told had gluten..and baking soda too? Should I do orange peel cleaners? Or go get chemical cleaners? I was totally gluten free today and it was so nice not having constant pain. Though I still was a little crampy it was nice to have less intensity.

How do I properly clean out my 14 and 29 month olds mouths if they do have gluten. How badly will it hurt me if I forget or miss a spot

Hi! We're newly gluten-free, too. My son was just diagnosed 2 weeks ago. We decided to switch the whole house gluten-free for now at least until we figure out how to get the hang of this. It has helped me not be paranoid about every little crumb, and now everything in the house is safe for my son to eat. I know everything is gluten-free. I'm experimenting with gluten-free bread, pancakes, pie crust, and other baked goods. Sometimes it works, sometimes it doesn't, but I think I'll get the hang of it eventually. We celebrate our successes, one by one. Overall though, we are eating not so different than we were, but there are a lot less snacky foods. We bought gluten-free pastas, crackers, pretzels, Chex cereal, and sauces. Lots of regular food is fine: Eggs, cheese, beans and rice, fruits, veggies and dips, meats, tacos, and so on.

The de-glutening process involved scrubbing out the kitchen and everything in it, top to bottom. I just used soap and water. Not so fun - my mother-in-law came and helped and we just did it all in one weekend.

Good luck!