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

Celiac Day 1


amcam17

Recommended Posts

amcam17 Rookie

Hello Everyone,

I'm new to all of this so I have no idea what to do. Yesterday I had an endo procedure done to confirm Celiac. Well,it turned out that I have Celiac. I have no idea where to go from here. All I know is I'm beyond fed up with feeling crummy all of the time. I have nothing really to go off of on what I can and can't eat all I know is my diet has to change today. Someone please help guide me, I'm scared and all I know is it is a huge life change.....

~Amie


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



Celiac.com Sponsor (A8-M):



Ninja Contributor

Hi Amie – Welcome to the board!

Here's an awesome thread that may help you: "Newbie Info 101"

Ask as many questions as you need/want to, we're all here to help! It will get easier, especially once you start to feel better. :)

GFinDC Veteran

Welcome Amy,

It can be kind of scary at first. After while you will find there are lots of foods to eat though. Staying away from dairy and soy may help you adjust. Cooking your food at home from whole ingredients is also very helpful. Limiting sugar and starch can help too. Many people end up with a lot of bloating at first due to the bacterial changes in the gut. Different food for you equals different food for them too. So limiting sugars and starches can help by discouraging overgrowth of gas making bacteria. Taking probotics and digestive enzymes may help too.

Think about eatting a simple diet of whole foods, rather than lots of processed foods. If you can find foods with 3 or fewer ingredients that is usually a good thing. As long as though ingredients aren't wheat, ray, barley or oats. Not all of us react to oats and soy but some do.

Dairy is often a problem but you may be able to eat it after you have healed a while.

Remember to bring your towel and don't panic. (Hitchhikers)

More threads to consume: :)

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Celiac Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Mateto Enthusiast

Hi!

You are SO fortunate to have had an endoscopy to find this out. Welcome on the board, and watch out for triticale too. It's a cross of wheat and something else that I can't remember right now, but it's 100000% pure sickening gluten.

jigsawfallingintoplace Newbie

Welcome to the forum:P

...and welcome to the start of your brand new life.

Iam nearly 4 months in and apart from the odd crash and mistake, my life is better than I couldever imagine when I was feeling as you put it 'crummy all the time'.

Everyone on here is lovely and some are very wise and experienced at all this gluten-free stuff so read, read and some more.

I have found that sticking to food as nature intended has been the best start for me. So I am eating roast chicken, potatoes - jacket, boiled, mashed or chipped, veggies galore (although I am a fan of frozen pease lol) . I eat salmon, beef, all the meats really. I eat crisps (read the ingredients as many are naturally gluten-free) and I have the odd treat like a choc bar which i check is gluten-free (many are).

On the whole, I find I have to be more organised - can't just say sod it I will have a take away and not cook tonight lol but its not that difficult.Once this option for pizzas and chinese etc was gone I kinda just accepted it really - it's easier than trying to lose weight and being tortured with the should I or shouldnt I school of thought. The answer is well if it makes me sick then I cant have it and that is that.Infact I really dont want it as I remember how bad I feel if I eat gluten stuff.

A word on the dairy - yes, stay of it for at least a month. goats cheese and sheep cheese feta were fine for me but other stuff including yoghurt of all things made me feel rotten. Your tummy just can't handle dairy until it hashad a chance to heal and the syptoms can be very similar to gluten so it is confusing. I am just starting to have cheese and milk now and I seem to be okay.

Eat loads of fresh veg and salad and fruit if you can. I love olives and herby salads so I am really enjoying salads again.

I suggest you don't eat out for a bit until you have built up some confidence - it just isnt worth it. I ate out in the early days and guessed or was given poor info. I was ill as a result. Now I know what to ask and I double check. I dont care about being a pain in the butt because I do not want to be ill its as simple as that.

Bit by bit you will get used to it and the change in your health will be marked - I can virtually guarantee it.

wishing you lots of luck (((hugs)))

Jigsaw xx

Cara in Boston Enthusiast

Welcome -

We have been gluten free for 1 year and three months. It was hard and overwhelming at first, but once you start feeling better, you get really motivated to get it right. Now it is a piece of cake and I really don't miss out on much.

Here's what NOT to do: Don't just go to the store and buy all the Gluten Free food you see - you don't really need it and it is mostly just empty, starchy calories. We bought it all - bagels, waffles, bread, crackers, pizza crusts, etc. etc. and I quickly put on 20 pounds.

After a while, I stopped craving these food (and for the most part, they really were not as good as the original, so why bother?) are started concentrating on cooking really delicious, fresh, naturally gluten free food. Since we no longer go out to eat as much, it sort of balanced out in our budget. Now I buy really good oils, cheeses, etc. and really enjoy my food. The whole family is eating better and we all feel better because of it.

Hang in there - it gets easier with time and practice.

Cara

sharilee Rookie

Welcome! I was diagnosed with celiac late February 2012. It is very overwhelming at first. But it does get easier with time. When I was first diagnosed I took my list of ingredients to watch for and checked everything. Would spend a long time shopping. Now I have learned the ingredients to watch for and it is easier and quicker to read the labels. At first (as others have said) it is best to avoid dairy and try to eat natural foods not processed foods while your body heals.


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



Celiac.com Sponsor (A8-M):



txgal748 Apprentice

Hi! Amie,

My neurologist told me I have Celiac disease May 21st because my IgA was 101. The gastroenterologist decided on a celiac panel to check for the celiac genes.

Anyhow, fortunately I am a Mexican. Traditional Mexican food uses very little flour. Flour tortillas are more of a modern Mexican food. As previous people have posted cooking meals from all natural ingredients is great. One thing to be mindful of in the beginning is condiments. You have to read labels. Worstesire sauce, Heinz 57, soy sauce, BBQ,sauce, and other marinades have gluten. Fortunately you can find substitutes for these such as gluten free soy sauce and BBQ sauce.

Chin up, at least with celiac you don't have to take any medications with terrible side effects.

Txgal

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.