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

Just Diagnosed...


emorgan1985

Recommended Posts

emorgan1985 Rookie

Hello everyone. I have just been diagnosed with Celiac disease and was wondering if anyone had any tips on getting started...grocery lists, recipes, or just plain advice is more than welcome! I am lost and I haven't even begun! Again...any help will be much appreciated. (Especially what to look for on ingredient labels!)


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Welcome!

First of all, know what the ingredients are for anything you put into your mouth and do NOT trust anyone else to read the label for you.

I would start with meats, poultry, fish, veggies, fruit, brown rice, potatoes, eggs ... they are all naturally gluten-free. Eating a simple diet like this will also help you heal. You can cook them in butter, coconut oil, olive oil, which are all gluten-free. Single herbs or spices are gluten-free ... if they have more than one ingredient, it's iffy.

Then, figure out what you want to add to that diet. Research each item ... for instance, pasta ... Tinkyada is a good brand of gluten-free pasta. If you have some other specific food you would like, then post here and we'll guide you.

I would stay away from the gluten-free replacement products until you are feeling better.

CarlaB Enthusiast

On ingredient lists on foods, look at the allergen statement, if it lists wheat, no need to look further. If it doesn't list wheat, look for barley, malt, rye, oats.

On personal products, usually it's pretty easy to spot wheat, barley or oats on the label. Sometimes the names are listed in latin, but usually they have the translation in parenthesis next to it.

Be careful of charcoal ... it has wheat in it. Use natural charcoal or put your food on foil. Be careful of contamination from previously cooked items that were breaded or had a sauce with gluten.

Most soy sauce or Teriyaki has gluten. It will be listed on the label as wheat.

Get a new toaster. Kinnikinnick bread is good, sold in the freezer section of stores like Wild Oats. I also like Van's gluten-free frozen waffles.

Get rid of old wooden spoons or other kitchen gadgets made from porous materials (scratched Teflon, plastic colander, etc.).

It's hard in the beginning, but once you go through all the products you use regularly, it's easy and becomes second nature. I've literally replaced EVERYTHING with a gluten-free version. :)

Lisa Mentor

Carla gave you good advise. Start simple.

Mrs. Dash entire line is gluten free.

Lea & Perrins Worchestershire Sauce

Kraft Products will always list gluten

Con Agra Products will always list.

La Choy Soy Sauce is gluten free as is San J Wheat Free Tamari

New Toaster for you.

Check you Teflon pans for scratches (gluten can hide)

Shampoos - it can get into your mouth

Lipsticks or lip balms - mouth issues as well

Lotions - mouth issues again

The learning curve is a steep one, but it can be done.

If you need help, it is all here. Read, read, read...you will not find a better source for Celiac information.

There are a million recipies on this site. And you might like to check out the Product Information Thread.

AND...welcome to our Club! :)

emorgan1985 Rookie

Thanks sooo much! I really appreciate it!

emorgan1985 Rookie

Do you happen to know where I can find gluten free bread and pasta? I know it's out there but the grocery stores around here don't seem to know what it is!

CarlaB Enthusiast

Kroger usually has a nutrition section that carries some gluten-free stuff.

Wild Oats, Whole Foods, or health food stores also carry it. Be sure to look in the freezer for the bread. I like Kinnikinnick bread and Tinkyada Pasta.


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



Celiac.com Sponsor (A8-M):



emorgan1985 Rookie

So how long in general does it take to start healing? When should I expect to start feeling better?

nikki-uk Enthusiast
So how long in general does it take to start healing? When should I expect to start feeling better?

This is really quite a tricky one to answer as it varies enormously from person to person.

Some people start to feel better in a few days - others take a bit longer.

My husband had alot of damage from celiac disease and it took him a good few months to feel any better (and it was a very slight thing - not something he noticed. It was only when he remembered how exhausted he felt at the beginning of going gluten-free that he realised he had made progress)

Hang in there!! - you will feel better :)

Queen Serenity Newbie

Hi and Welcome!

My suggestion for you is to stick to simple foods: meats, veggies and fruits. It will take you a while to become used to this experience. As for the healing time, it really does vary, depending on you and not getting yourself glutened. For me, it took a year for my body to feel a difference. Now, I can tell you, having lived with this for twelve years now, that you will become an expert at handling everything. :D Just give it some time! Back in the day, there wasn't as much food availability as there is today. There are so many companies on-line where you can order some of the best cakes, cookies, and even breads. Try the Gluten Free Cookir Jar. This women uses her own baking facility in back of her home, and makes things that taste like the real thing. Do you have a Shoprite store near you? They do carry gluten free foods. Have you ever approached the grocery manager at you local supermarket, and asked if they could order you gluten free foods? I had to do this years ago, and they can be very accomidating just to keep your business. How about health food stores? Are there any near you? They also carry gluten free foods. It's just a matter of patience and time. Besides, we're all here to help! Never be afraid to ask, no matter how stupid you think it is. Good Luck!

Vicki

barbara123 Apprentice
Hi and Welcome!

My suggestion for you is to stick to simple foods: meats, veggies and fruits. It will take you a while to become used to this experience. As for the healing time, it really does vary, depending on you and not getting yourself glutened. For me, it took a year for my body to feel a difference. Now, I can tell you, having lived with this for twelve years now, that you will become an expert at handling everything. :D Just give it some time! Back in the day, there wasn't as much food availability as there is today. There are so many companies on-line where you can order some of the best cakes, cookies, and even breads. Try the Gluten Free Cookir Jar. This women uses her own baking facility in back of her home, and makes things that taste like the real thing. Do you have a Shoprite store near you? They do carry gluten free foods. Have you ever approached the grocery manager at you local supermarket, and asked if they could order you gluten free foods? I had to do this years ago, and they can be very accomidating just to keep your business. How about health food stores? Are there any near you? They also carry gluten free foods. It's just a matter of patience and time. Besides, we're all here to help! Never be afraid to ask, no matter how stupid you think it is. Good Luck!

Vicki

been so tired, can't think and need to drop every chance i get. Been on the gluten-free diet now for 18 days now very happy that i am not vomiting anymore but cant do anything. Woke up this morning and have bliste on my lip :(

Dontl know if i am doing something wrong or what it's tiring just to take a breath. Feel dizzy went down and got some ensure would liquid vitamins help? Don't know what to do. This is getting frustrating. Thanks Barbara123

emorgan816 Newbie

I've ordered bread and pasta from kinnikinnick foods online. They even have a gluten free version of the Oreo (chocolate and vanilla). The stores by me are very lacking in selection too. Kinnikinnick does charge $10 for shipping, so I usually stock up when I order. Their donuts are not bad either.

Elizabeth

Queen Serenity Newbie

Hi Barbara,

Don't despair! 18 days is just a short period of time. You are only at the beginning of that long road to recovery. If you can, try and get as much rest as you can. Your body has been through a lot. Are you doing anything that is causing stress? Do you work? If so, did you return yet? If you did, ask your boss for light duty. Recovery is essential to your feeling better. You should not feel guilty about resting. Unfortuately for me, I could not do this during my recovery. I had two small sons at the time, and I was a stay at home mother. As for you energy levels, don't worry about it, it's all part of the process. Remember, your body has been through the war, now it has to build itself back up again. Trust me, in time you will feel better. I understand your brain fog issue, but as I said rest is the key. I hope you feel better with each passing day. Let me, or anyone else know, if you have any more questions. :)

Vicki

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,555
    • Most Online (within 30 mins)
      7,748

    JMF
    Newest Member
    JMF
    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.