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

On-The-Go Newbie...


hockeygirl3

Recommended Posts

hockeygirl3 Newbie

I was diagnosed with celiac just over two weeks ago... I'm almost 26 and have been acutely sick since September 2010, although I've had serious intermitten abdominal problems since I was 14 (so bad that I was given exploratory abdominal surgery in 2006). Even after JUST the first week of gluten-free and large doses of supplements from my ARPN I felt some improvement. Finally!

But... I am a bread-and-pasta-loving-girl. It is killing me on this diet. Last week after an exhausting day I came home (currently staying with my parents since I've been horribly sick since last September) and there was a waffle sitting on the kitchen table (leftovers from their dinner). I was tired, emotional, and fed up... I ate it, and went to bed feeling redeemed. But boy did I pay for it the next 3 days!!!

I've learned my lesson, now that I see what even one tiny "cheat" can do to my body. But I'm looking for quick coping skills from anyone who has found them. I don't expect my family to eliminate gluten from their house for me, but when I'm hungry and the only thing gluten-free that I can eat is eggs or Chex (which get old... kind of fast) it's hard to look at the other stuff. It also hasn't helped at all that I've been so sick I lost my job, and gluten-free food "off the shelf" is a little too pricey for me at the moment. :( Also, I travel a lot and I'm always on the go (even though this disease has flattened me, ugh), doctor's appointments and job searching and whatnot, and I'm really bad at remembering to take fruit or something with me when I leave. Anyone find a good way to remind yourself?

I'd say leave some food in the car but summer is coming up and I can't imagine food staying good to eat in the hot interior of a car sitting out in the sun. :(

I have relatives and friends who were diagnosed with diabetes and I asked them how they dealt with the sudden diet change. They all said pretty much the same thing, that they can eat just about anything AS LONG as they are super careful about portions and whatnot. Then they said they didn't think it was as hard as giving up gluten cold turkey. Not exactly the pep talk I was looking for, haha. At least we don't have to stick ourselves every day to check our sugar levels! (if I had to do that I'd be a sunk ship)

Sorry if I seem like I'm whining or being difficult. I want to do well at this, but I feel like I don't have the personal tools yet. I was getting ready to move in with my boyfriend when I got sick, and now it is being put off until I am feeling much better (unfortunately it was going on for so long I have permanent damage, but my ARPN says I will still heal tremendously). He's wonderful about it, totally supportive and proactive about buying gluten-free foods he knows I like to have them on hand at his place, but he lives in NY (and I'm in NH) so we are only together on weekends! During the week it seems is where I am fighitng my battles with myself.

Kudos to everyone who is managing this already... 2 weeks feels like an eternity. Sometimes I feel so overwhelmed when I think about the rest of my life looming in front of me without my favorite foods. I know it's for the best, and I know I will continue to feel so much better as long as I am good about it. My mom says I'm just mourning the loss of my favorite foods... at first I thought that was silly but the more I thought about it the more it made sense to me.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

There's no getting around it, it IS hard at first, You have to develop a whole new way of living and a whole new set of habits. Right now you are still living under your old habits and that's what is making your life hard. Once you ingrain the new habits it will get a lot easier.

The first rule is that you always have gluten free food/snacks in your car and in your purse, so that if you are ever caught in gluten land or no-man's land, you have something to eat.

Second rule is to avoid temptation. I know it looks enticing, but you just have to think of the days of suffering that that one moment of weakness will cause you. Is it really worth it? NO!!!

Living in a house with gluten eaters is tough, because the potential for cross-contamination is so high. You really need your own cooking utensils and toaster and colander.

You don't have to go out and buy expensive gluten free processed foods. In fact it's better if you don't at first, with a few possible exceptions so you don't feel totally deprived. All fresh meat, fruits, vegatables, rice, gluten free pasta, eggs are naturally gluten free. You may want to skip the dairy products that contain lactose at first (milk, cream and ice cream especially) because if your gut is damaged you will not be able to digest those. Use the family crock pot, if you have one, and make yourself up some stews and soups and freeze portions that you can just pop in the microwave and heat up when you come home tired and ravenous.

Another friend for you is a little portable cooler that you can stick an ice pad in, and take along with you cheese, gluten free cold cuts and crackers, whatever rings your chimes. Just don't leave home without it now that summer is coming on especially. Larabars, if you have not discovered them, are great snacks, Nuts, dried fruits are also good to have with you at all times. You do have to think ahead but it will become second nature to you after a while. I guess I am lucky because I go shopping once a week since it's 45 minutes away, and I always make a check list of what I am doing and the things I need to take with me. You will form new habits and these things will become easy and ingrained after a while.

I do think it is wise to not move in with your boyfriend until you have learned yourself how to live gluten free, and can train him :)

Do not despair. There are hundreds of thousands of us doing it every day, and it does become second nature after a while. Just hang in there. And we are here to support you. Feel free to ask any questions you have.

ciavyn Contributor

Oh, girlfriend...I hear you. I've been gluten-free for a year and a half...it's easy for me. I've never cheated. BUT...I bought cupcakes for my retreat buddies this past weekend, and let me tell you: it killed me! These were fresh-made, gourmet cupcakes from a private bakery. And I'm not even into cake! But the smell and appearance were devastating.

So I had ice cream, instead. ;)

There are some great gluten-free alternatives out there. And think about what you really like about bread and pasta. For me, it was the filling and sauce. So I eat burgers and sandwich fillings without the bun. I eat spaghetti sauce on shirataki noodles, spaghetti squash and zucchini. You can also buy gluten-free pasta (schar is the best, IMO). If you really love bread for simply bread, then check out The Gluten-Free Girl and the Chef and the Gluten-Free Goddess for great recipes. I make my own waffles, pancakes, etc. with Pamela's mix or gluten-free Bisquick. Yummy.

But your best bet is to make yourself a deal: no gluten-free pastas and bread for one month. Eat everything else. Try something new on a regular basis. Check out new recipes. It will help your taste buds to get acclimated. Now I don't know what gluten items taste like, because I haven't had them in so long. And try, when possible, to embrace this healthier eating. You know that diet everyone says they should be on? That desire to eat healthier because they know they should? Guess what? You are going to be doing it. You'll be able to give advice on how to do it, because you will be living it. And you WILL feel better. People are amazed by how I eat -- and I like eating this way! I love vegetables and fruits, meats and tofu. Because I'm off a lot of sugars and stay away from most carbs like gluten-free breads and pasta, the real, whole foods taste 100% better.

Hang in there. It does get easier. And you are entitled to whine and mourn the loss of one lifestyle. It takes time to adjust.

Cara in Boston Enthusiast

I am terrible at planning ahead so at the beginning of the week I make little bags of snacks (ziploc sandwich sized bags) and keep them ready to grab as I walk out the door. I use the snack size bags to keep things separate.

So far, the best combination (keeps me full) is:

pretzels (Snyders makes gluten-free ones that are good and not expensive)

nuts (walnuts, almonds, cashews, I buy them at Trader Joe's)

Laughing Cow light cheese (those round ones with the wax coating . . do not need to be kept cold)

dried friut (apricots, cranberries, plums . . . again, from Trader Joes)

If I get stuck somewhere at lunch time, this is enough to take care of it.

It really does get easier.

Cara

RiceGuy Collaborator

I agree with what mushroom said, and would add that when the time comes that you want gluten-free breads, making your own is far less costly than buying it ready-made. Plus it can be much healthier. If time is a limiting factor, you may want to consider a bread machine - one with a good reputation for making gluten-free breads. I cannot recommend one however, as I bake from scratch, but there are plenty of members here who use such devices. But as was already stated, it is best to stick with unprocessed foods as much as possible right now. Your body needs time to heal.

It does get easier over time. You'll get there!

goodnews Apprentice

You are totally mourning the loss of those foods, which makes complete sense. I have been doing that the past couple weeks getting myself ready for a diagnosis. I was just telling my husband that the thought of never eating a food again is a hard thing to process, even if I don't eat it a lot now. For me even if I don't get a diagnosis next week I plan on trying gluten free to see if it will help me not feel so sick. To get myself prepared I have been researching and finding things I can still eat. I am a healthy eater already, but I do LOVE pasta and bread. Cake I can do without but I like cookies too. But the things that made me happy that I will still be able to have include:

fritos (original)

cheetos

tostitos (maybe with some salsa and cheese shredded cheddar)...or homemade quacamole and salsa

lays potato chips with homemade dips

reeses peanut butter cups

dove chocolate

icecream

cornbread (and chili)

ore ida tater tots

I am not a huge eater of all these things now...but I like them and excited about the chips for snacking if I start to starve. Good luck!

staci002 Rookie

You are totally mourning the loss of those foods, which makes complete sense. I have been doing that the past couple weeks getting myself ready for a diagnosis. I was just telling my husband that the thought of never eating a food again is a hard thing to process, even if I don't eat it a lot now. For me even if I don't get a diagnosis next week I plan on trying gluten free to see if it will help me not feel so sick. To get myself prepared I have been researching and finding things I can still eat. I am a healthy eater already, but I do LOVE pasta and bread. Cake I can do without but I like cookies too. But the things that made me happy that I will still be able to have include:

fritos (original)

cheetos

tostitos (maybe with some salsa and cheese shredded cheddar)...or homemade quacamole and salsa

lays potato chips with homemade dips

reeses peanut butter cups

dove chocolate

icecream

cornbread (and chili)

ore ida tater tots

I am not a huge eater of all these things now...but I like them and excited about the chips for snacking if I start to starve. Good luck!

Thank you so much for sharing this lists of snacks. I was starting to panic a little because I'm also new and I had no idea that I could eat these things! Now I'll know where to turn in a pinch when I'm starving at work :) Thanks!!


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

what worked best to remind me to take food with me when I'm out is forgetting to do so a few times and feeling like crap. works pretty well.

when you have an hour or two on a day, make something naturally gluten free that you can have leftovers from - lentil soup, stir fry, etc. then you just have to pull something out of the fridge.

Angelica Rookie

I have just gone gluten free, and as I live alone and have always been a big cook (i was already on an unprocessed, whole-grain diet before the gluten-free one) it hasn't been a rough adjustment... I didn't eat junk food already. But here's some advice that my best friend (who is celiac) gave me (she's a doctor)

Because my friend is a hospitalist pediatrician she is always running around and on long shifts. So she keeps a box of Larabars in her locker and makes sure she has a couple in her labcoat pockets at all times. She cooks her meals for the whole week on her day off and freezes them, so that she never has to cook during the week. (Also she has retired parents who are big foodies and sometimes they do this for her to help her out.) She also buys her snacks in bulk over the internet (amazon is often cheaper than the store when you buy in bulk) and packages them up so that she can grab and go. And her partner has adjusted to the gluten-free lifestyle-- eating gluten-free at home, and only have gluten products when they go out to eat. She manages fine, and trust me, as a doctor who works insane shifts she knows about having no time.

See if there is a gluten-free bakery near you. Ask around- I found one in my city (San Antonio) and went in today-- They had amazing bread (not like the gluten-free bricks at the store), pie and cupcakes. Cupcakes!! I bought one. It is just good to know where you can get the gluten-free comfort food if you have a craving. I feel better already having found the bakery.

Also find people who are just generally supportive. I got lucky in that my best friend is and that my parents have been super supportive. My dad surfs the internet (he's retired) and sends me gluten-free recipes. Also I told a few select colleagues and they have been helpful too (they were the ones that gave me the info on the bakery and they aren't even gluten-free.)

best of luck- I have just gone gluten-free too, and am trying hard to just stay positive.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748

    Lunaluv
    Newest Member
    Lunaluv
    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.