Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New To This - Help Please


KikiUSA

Recommended Posts

KikiUSA Explorer

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tmbarke Apprentice

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

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

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

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

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

KikiUSA Explorer

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 :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



T.H. Community Regular

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 :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci posted a topic in Coping with Celiac Disease
      0

      New Celiac Mama in My 30s

    2. - knitty kitty replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,

    3. - Yaya replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    4. - larc replied to Jhona's topic in Introduce Yourself / Share Stuff
      29

      Does anyone here also have Afib

    5. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      8

      Help I’m cross contaminating myself,


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,919
    • Most Online (within 30 mins)
      7,748

    SB Willow
    Newest Member
    SB Willow
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • tiffanygosci
      Hello all! My life in the last five years has been crazy. I got married in 2020 at the age of 27, pregnant with our first child almost two months later, gave birth in 2021. We had another baby in April of 2023 and our last baby this March of 2025. I had some issues after my second but nothing ever made me think, "I should see a doctor about this." After having my last baby this year, my body has finally started to find its new rhythm and balance...but things started to feel out of sorts. A lot of symptoms were convoluted with postpartum symptoms, and, to top it all off, my cycle came back about 4m postpartum. I was having reoccurring migraines, nausea, joint pain, numbness in my right arm, hand and fingers, tummy problems, hives. I finally went to my PCP in August just for a wellness check and I brought up my ailments. I'm so thankful for a doctor that listens and is thorough. He ended up running a food allergy panel, an environmental respiratory panel, and a celiac panel. I found out I was allergic to wheat, allergic to about every plant and dust mites, and I did have celiac. I had an endoscopy done on October 3 and my results confirmed celiac in the early stages! I am truly blessed to have an answer to my issues. When I eat gluten, my brain feels like it's on fire and like someone is squeezing it. I can't think straight and I zone out easily. My eyes can't focus. I get a super bad migraine and nausea. I get so tired and irritable and anxious. My body hurts sometimes and my gut gets bloated, gassy, constipated, and ends with bowel movements. All this time I thought I was just having mom brain or feeling the effects of postpartum, sleep deprivation, and the like (which I probably was having and the celiac disease just ramped it up!) I have yet to see a dietician but I've already been eating and shopping gluten-free. My husband and I have been working on turning our kitchen 100% gluten-free (we didn't think this would be so expensive but he assured me that my health is worth all the money in the world). There are still a few things to replace and clean. I'm already getting tired of reading labels. I even replaced some of my personal hygiene care for myself and the kids because they were either made with oats or not labeled gluten-free. I have already started feeling better but have made some mistakes along the way or have gotten contamination thrown into the mix. It's been hard! Today I joked that I got diagnosed at the worst time of the year with all the holidays coming up. I will just need to bring my own food to have and to share. It will be okay but different after years of eating "normally". Today I ordered in person at Chipotle and was trying not to feel self-conscious as the line got long because they were following food-allergy protocols. It's all worth it to be the healthiest version of myself for me and my family. I would be lying if I said I wasn't a little overwhelmed and a little overloaded!  I am thankful for this community and I look forward to learning more from you all. I need the help, that's for sure!
    • knitty kitty
      On the AIP diet, all processed foods are eliminated.  This includes gluten-free bread.  You'll be eating meats and vegetables, mostly.  Meats that are processed, like sausages, sandwich meats, bacons, chicken nuggets, etc., are eliminated as well.  Veggies should be fresh, or frozen without other ingredients like sauces or seasonings.  Nightshade vegetables (eggplant, potatoes, tomatoes, peppers) are excluded.  They contain alkaloids that promote a leaky gut and inflammation.  Dairy and eggs are also eliminated.   I know it sounds really stark, but eating this way really improved my health.  The AIP diet can be low in nutrients, and, with malabsorption, it's important to supplement vitamins and minerals.  
    • Yaya
      Thank you for responding and for prayers.  So sorry for your struggles, I will keep you in mine.  You are so young to have so many struggles, mine are mild by comparison.  I didn't have Celiac Disease (celiac disease) until I had my gallbladder removed 13 years ago; at least nothing I was aware of.  Following surgery: multiple symptoms/oddities appeared including ridges on fingernails, eczema, hair falling out in patches, dry eyes, upset stomach constantly and other weird symptoms that I don't really remember.  Gastro did tests and endoscopy and verified celiac disease. Re heart: I was born with Mitral Valve Prolapse (MVP) and an irregular heartbeat, yet heart was extremely strong.  It was difficult to pick up the irregular heartbeat on the EKG per cardiologist.  I had Covid at 77, recovered in 10 days and 2 weeks later developed long Covid. What the doctors and nurses called the "kickoff to long Covid, was A-fib.  I didn't know what was going on with my heart and had ignored early symptoms as some kind of passing aftereffect stemming from Covid.  I was right about where it came from, but wrong on it being "passing".  I have A-fib as my permanent reminder of Covid and take Flecainide every morning and night and will for the rest of my life to stabilize my heartbeat.   
    • larc
      When I accidentally consume gluten it compromises the well-being of my heart and arteries. Last time I had a significant exposure, about six months ago, I had AFib for about ten days. It came on every day around dinner time. After the ten days or so it went away and hasn't come back.  My cardiologist offered me a collection of pharmaceuticals at the time.  But I passed on them. 
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure! Thank you kitty kitty   I am going to look this diet up right away.  And read the paleo diet and really see if I can make this a better situation then it currently is.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.