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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.