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New To This - Help Please

KikiUSA

By KikiUSA
in Coping with Celiac Disease

Recommended Posts

KikiUSA Explorer
KikiUSA
Posted

I have just recently been diagnosed with Celiac Disease on Dec. 2nd...my husband and I have been reading alot of web sites but they seem to be saying different things. One site said never to have anything that said Non Dairy on it and not to ever eat lunch meats, hot dogs, sausages ect.....and then other sites are saying its ok. I am lost and very confused any help would be much appreciated.

Thanks

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tmbarke Apprentice
tmbarke
Posted

I understand the confusion.

You're best off to start with what God intended us to eat while in transition.

Fruits

Vegetables

Whole Meats

Milk

Eggs

Nuts

Brown Rice

It is best to avoid processed foods at this stage.

You can check the FAQ's on websites to check the gluten contents of their products.

I found that Hormel meats will state Gluten Free on their packages of lunch meats and Jenny-O Turkey sausage is Gluten Free

Use them sparingly as you heal

You'll learn more as you go - gluten free pastas, pasta sauces, breads and so on.

You can go to the forums here and do a search for certain things like sour cream and you'll find information on what is safe for that baked potato.......not all sour creams are safe.

Good luck but start with your whole foods first.

butterfl8 Rookie
butterfl8
Posted

Welcome to feeling better!

Whole foods are best--I love the outside of the grocery store. My two doctors and the nutritionist I saw upon my diagnosis recomended the following: Avoid diary for the first 3-6 months, until the villi have healed up enough to tolerate it again. As far as lunch meats, Hormel does have some great options, as does Oscar Mayer. Both are the pre-sliced. I was advised to stay away from the deli counter as not all meats are gluten free, and the slicer is used on all meats, resulting in everybody's worst enemy--cross contamination.

-Daisy

mamaw Community Regular
mamaw
Posted

Hello & Welcome

at the beginning it is better to stay with plain (naked) meats, fish, veggies, & fruits. Meaning no marinades, sauces, rubs, or coatings. McCormick clearly labels there spices so you can spice up on your own if you like.

Many times after people have been gluten-free for a bit they notice that other things (foods) seem to bother them that they never realized before. Dairy for sure.. the protein in dairy is also broken down at the tips of the villi. Another reason to stay basic for several months....

As far as hot dogs & deli meats( we call these fake non-nutrient foods) there are hot dogs & deli meats that are gluten-free....we use Boar's Head or Dietz & Watson.

I'm not sure where you live but look for a gluten-free support group & find a mentor that can help you begin. If there is none in your area this is a good site for good info.

This journey isa a learning process & it does take awhile to asborb your new lifestyle.

The main thing is NEVER CHEAT, once you cheat it is hard not to do it over & over , then you are defeating your goal of getting healthy again. One crumb is to much.

If you have a dual kitchen gluten-free & gluten in it you will need to make changes . Pots & Pans , utensils, cutting boards, toaster , hand mixer, bread maker anything with a scratched surface needs to be replaced for your gluten-free foods. Teflon is a good example of a porous surface that you shouldn't use once it is scratched. Ceramic, stainless are good finishes ....

You will need to become a label reader as well. Mfg's change ingredient list often at times. When they can get a cheaper ingredient the product changes. So what is gluten-free today may not be gluten-free the next day, week or month.....

hth

blessings

mamaw

KikiUSA Explorer
KikiUSA
Posted
  • Author

Thank you all for this very helpful information. I had no idea about the kitchen, wow there sure is alot for me to learn.

Thanks again

KikiUSA

mamaw Community Regular
mamaw
Posted

Your Welcome. If you have any other questions just ask. I'm a gluten-free mentor from Pa

KikiUSA Explorer
KikiUSA
Posted
  • Author

Thanks mamaw that makes me feel alot better. I need as much direction as I can get. This week has been so over whelming and it just doesn't seem real that this is happening.

My husband and I went to Sprouts and bought Amys frozen gluten free bowls thinking they were ok as we are still learning how to read the labels and then I read a blog on how Amys foods have made people not feel so well, I got upset and depressed. I sure hope I get the hang of this soon. My dr. said I need to start my gluten free diet ASAP and I feel like all I have done is make alot of mistakes and I still am in pain :( I am not going to give up and I want to learn as much as I can about this disease so I can live happy and pain free.

Thanks for all your support, this helps knowing there are people who care and understand what I am going through.

I have recommended this site to all my family as we all have never heard of this disease until I was told I had it, so we are all trying to learn as much as we can and this site is the most helpful.

We live in Arizona by the way :)

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T.H. Community Regular
T.H.
Posted

Hey KikiUSA,

Ha, I live in AZ too! Down near Tucson! Nice to meet a fellow Arizonan! (If you care to, feel free to email: writetalk@gmail.com . No offense taken if you don't, though!)

I was just diagnosed in July, so I know how you feel - a few months already and sometimes I still feel like I'm trying to figure out what the heck I'm doing. Those first couple weeks were a killer - what a stress!

Are you anywhere near Tucson? They have a local celiac disease group (Open Original Shared Link ) that lists gluten-free friendly restaurants in the area, etc... They are how I found my current GI doctor (Dr. Tamura) who really knows his stuff about Celiac.

Lovin' Spoonfuls is a very gluten-free friendly restaurant here, although they are vegan, so no meat. Their gluten-free menu is almost as big as their normal one, even having millet bread for PB&J sandwiches for the kids. Claim Jumper is also VERY allergy/gluten conscious, if you tell them what you need.

If you're in Phoenix, they have a Gluten free bakery! ( Open Original Shared Link )

And, for starting out? This is what I found out that was most helpful:

1. LOTS of gluten free blogs, like glutenfreegirl, that have tons of gluten-free recipes that are very good. They seem to fall into 2 categories: foodie/gourmet types, and 'holy crud, what the heck do I eat now, I just want to get through my day without spending 10 hours cooking' types.

2. I didn't get a lot of value out of most of the gluten free cookbooks. The majority of them seemed to have foods that were normally gluten free that I already knew (like baked potatoes) or had dishes that I had to substitute so much for the usual 'wheat' ingredients, that it was almost like taunting. 'Here, have a food that looks like the original, but tastes half as good, so you can remember what you used to be able to eat and feel bad about it.'

3.At the same time - getting a 'Gluten free' flour mix to use can help when you really crave a food you used to have. I have a versatile one a friend gave me that I'd be happy to share, if you like.

4. If you have not had any blood relatives tested for celiac disease? I would really urge you to try and persuade them to get the test done. I was told to try and get every relative within one degree of separation from me tested for Celiac. My father, my brother, and my daughter all came back positive! And two of them had no symptoms at all, of any kind, so I'm really glad they got it done!

5. Udi's gluten-free bread - the only kind I've found that you can eat without having to toast it to make it palatable. Whole foods brand is similar, though, so I'm told. Food For Life Millet bread was the best out of this brands breads, I thought, although I would recommend toasting. Tinkyada brown rice pasta has a nice texture. If you don't cook it the last minute, and instead drain the water out, and then toss in the sauce for it to soak in for a minute or two? The pasta will absorb the sauce - tastes pretty darn good that way!

6. gluten-free products usually have more fats and more sugar than the normal products. They also still strip out the nutrients if they are using refined flours (rice, millet, etc...), but unlike normal breads, crackers, etc... they don't fortify with vitamins. So buying whole grain ones is much better for your health, and your waistline, LOL.

7. I have heard people recommend that you say you have a 'gluten allergy' when you go to a restaurant, etc... and are looking for food. People know what an allergy is, and why it's bad, so it can save a lot of explanation, etc... I didn't used to do this, but after a few times where I got, essentially 'oh, you can have some gluten with celiac disease and its not a big deal,' I changed my mind.

8. If no one's mentioned, staying off of dairy of any kind, for a few months, will likely be helpful. If you have damage from celiac disease, the part of the cilia that digests the dairy is the part that IS damaged, so you're probably not digesting it very well right now. Means that it is harder on your system when you eat it, until you heal up.

9. Re: companies and whether their products are gluten-free. First, forums have been a great way to find letters/emails from the companies, about their products. Next, be aware of what country the information is coming from: companies have different ingredients for different countries, even in the same products!

So far, gluten-free is growing in popularity: for diets, for allergies, for help with certain illnesses, etc... So if they can, putting gluten-free on a label is likely to get more sales. If that is NOT on the label, the reasons I've usually seen are this: 1) the company changes ingredients periodically, and they don't want to have to change the label every time they do. For us? I think that means that it's tricky buying from them, because they could start to use gluten without us even being aware. 2) Another reason is the company can't guarantee there is no cross-contamination. Usually, they'll say: this product is gluten free, but we cannot guarantee...etc... Or it doesn't meet the 'analytical standards' of the current laws (I loved that one.) So, to my mind, that means it's not gluten free, but they don't 'deliberately' add any gluten. 3) There are no ingredients added that are gluten, but gluten is used in the production of the food. This one I see a lot - like corn tortillas. Most of them are contaminated with flour, because they will usually add wheat flour to the molds they use to shape the tortillas! Or Hershey's kisses - they were flouring the molds used to make the kisses too. (Don't know if they still are). For these? They won't even say they 'may contain' wheat, at all. :-(

10. Things to look out for! Basically, it helped me to remember that if it can get in your mouth (breathed in too!) then it can give you gluten. Dry wall dust, for ex, has gluten in it. So does tempura paint. So does the majority of lipstick and chapstick stuff. Shampoos can have gluten - often do - so if you accidentally get a little in your mouth - there's gluten. Same with soaps, lotions, or nail polish on your hand, if you are a person who chews their fingernails, or licks her thumb to turn a page, etc... Some flourides, mouth washes, toothpastes and dental polishing paste can have gluten (have to check with your dentist when you go. They can use the unflavored pumice powder (I think that's the name) for the polishing, if they aren't sure about the polishing paste).

And ...well, said more than I meant to, LOL. I guess lastly...just good luck! It's been tricky figuring out what's really Gluten Free and what's not, in the beginning. But it will slowly come together. I ended up getting little blank stickers and putting 'gluten-free' on them and sticking them to the foods that I had in our fridge. It helped so that we didn't double dip - like using a knife on wheat bread and then on the butter I was going to use, you know?

I wish you the best!

Thanks mamaw that makes me feel alot better. I need as much direction as I can get. This week has been so over whelming and it just doesn't seem real that this is happening.

My husband and I went to Sprouts and bought Amys frozen gluten free bowls thinking they were ok as we are still learning how to read the labels and then I read a blog on how Amys foods have made people not feel so well, I got upset and depressed. I sure hope I get the hang of this soon. My dr. said I need to start my gluten free diet ASAP and I feel like all I have done is make alot of mistakes and I still am in pain :( I am not going to give up and I want to learn as much as I can about this disease so I can live happy and pain free.

Thanks for all your support, this helps knowing there are people who care and understand what I am going through.

I have recommended this site to all my family as we all have never heard of this disease until I was told I had it, so we are all trying to learn as much as we can and this site is the most helpful.

We live in Arizona by the way :)

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    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
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