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  1. Good luck with the tests. Hopefully it won't turn out to be anything serious. This may not be connected to your Celiac, but I think you're right that we (docs included) don't yet understand all the ways Celiac can affect other body systems and be linked to seemingly unrelated problems. Maybe the increase in Celiac and diagnoses will help improve our global understanding of it.

  2. Thanks for the explanation, D. It's true I'm not living in the U.S., but I have U.S. insurance and my doctor, who is an Osteopath, is there. I'll ask her about nutrient testing when I visit at Christmas. She doesn't have a deep knowledge of Celiac, but to her credit she is the one who suspected and tested for Celiac when I thought that was the least likely explanation for my issues, and she has always been very receptive to my requests for bloodwork tests, etc. I can ask her about nutrient testing and if she thinks I need enzymes when I see her next. It's just a shame that won't be for another few months yet.


    Well done for taking matters into your own hands, getting the tests, and figuring out the best route of healing for you.

  3. Blonde and blue eyed could make you more disposed to Celiac, only because it's supposed to be most prevalent in northern Europeans, who tend to have a lot of blue-eyed blondes. I happen to fit that description as well. I've also had the same experience as you where I can feel tired and low energy in daily life, but then when I workout, I get a burst of energy and can workout quite hard. I'm wondering if that might not be a hormonal issue (maybe low dopamine or something?). I've just started B12 supplements to see if that will help at all.


    Let us know what the doc says!

  4. Thanks for your responses guys. D, that's really great that your levels have rebounded after initially getting worse and that you are feeling better. It's certainly reassuring as well, if you too had a nutrient dip originally on the diet and then have turned it around. Everyone says healing takes time, and I don't mind being patient, I just want to make sure I'm doing everything I can to make myself better.


    Are digestive enzymes like probiotics or do they act differently? I've just bought probiotics for the first time, as well as some vitamin B12 and D supplements, so hopefully those will help. I thought my GP had tested my vitamin levels at my June appointment, but either she didn't, or never sent me the results (I've written her now to request them). She had sent me the results of the blood count tests, which seemed normal, a follow up Celiac antibody panel (all still positive, but lower values I think), and iron tests. Aside from the Celiac panel, the only thing that seemed abnormal there was a very low ferritin level, just within the bottom end of the normal range.


    I'm not familiar with the nutrient absorption tests you mention. Are those different from just checking your vitamin levels? Are they tests your doctor will order or do you have to do them through a private company? Also, how did you know what foods and spices you had antibodies to?


    W8in4dave, I'm sorry you are having issues as well. Being relatively new on this diet, I guess our bodies are still adjusting. You may be right that the deficiencies have been a long time in the making and maybe it's just a coincidence that the fingernail grooves and other manlnourishment symptoms started soon after my gluten-free diet did. I certainly can't imagine what major vitamins or minerals I'd suddenly be missing just because I cut out tortillas and whole wheat crackers!

  5. Hi all, it's been about seven months since I got my Celiac diagnosis and started my gluten free diet. I thought I was eating well, avoiding most processed foods and cooking for myself, with plenty of vegetables and lean animal proteins. My gastro symptoms virtually disappeared, and I expected that my gut must slowly be healing and my vitamin absorption increasing. But recently, I noticed that my thumbnails have become all ridged, with these deep horizontal grooves. They appear to be Beau's lines - a sign of malnourishment, serious illness, and some vitamin deficiencies, and they cover most of the nail, so they must have started about five months ago. I've also noticed that my nails have become much weaker and are peeling off, and my hair may have even thinned out a bit as well. I have to say, I was pretty thrown off to realize that even though I thought I was eating so healthfully, I now have more outward signs of vitamin deficiencies than I did when I was an undiagnosed Celiac with constant gastro symptoms.


    Did anyone else have this experience of the gluten-free diet leading to greater vitamin deficiencies or new external signs of malnourishment? I've been to see a dietitian and am waiting for her recommendations (all she said so far was to eat more rice). Hopefully she can help me pinpoint the nutritional gaps and fix them. I know vitamin deficiencies are a normal part of coping with Celiac, but shouldn't indicators be getting better rather than worse? Up until now, I had been pretty positive, feeling like Celiac was totally manageable as long as I just ate gluten-free and healthy. But I have to say, this has shaken my confidence in how much of my health I can control through good decisions and a healthy lifestyle.

  6. It's true that there are other things that can cause a particular serological test to appear positive. Can you check what tests they did to see whether you had more than one that was positive and what tests those were exactly? After that, you'd have to research what the other potential causes of that particular test or tests being positive are and see whether they are likely options for you. (In my case for example, Giardia or tropical sprue seemed like strong possibilities that could have explained the positive bloodwork and the biopsy, but the success of the diet in sorting out my symptoms settled the question.)


    Did you have an initial period when you went gluten free where your symptoms improved at all? If so and then symptoms, returned, it's possible that you do have Celiac, but have additional intolerances like some people do. As mentioned, it could be lactose, or soy or corn or one of the other grains that could have become more prominent in your diet since going gluten free.


    If you really think you have been misdiagnosed, you could try gently reintroducing some gluten (ie. a mini gluten challenge). If you don't get new or worsened issues, then gluten might not be the root of your problems. Having a medium amount of gluten in your diet for a few months would also allow you to have new blood tests and a biopsy. But, if you do have Celiac, this will do your body harm and could cause your symptoms to get worse. Good luck.

  7. Given that your blood tests were all negative and the gene test is never conclusive, it sounds like the doc is mainly going on the biopsy and symptoms. It definitely could be Celiac, but there are also other conditions that can cause flattened villi similar to Celiac (giardia for example). It's worth researching the various differential diagnoses to see if you think any of them are likely, or maybe considering getting the blood tests done again elsewhere in case there was an error.


    Since you are having symptoms, you can also do your own test by going completely gluten free for a couple of months and see if it makes a significant difference. That along with the biopsy findings would be a pretty strong signal that it's Celiac or at least gluten sensitivity. And if you do turn out to have other autoimmune conditions, those would also make Celiac more likely.


    Good luck. I hope you get the right answer so you can get healthier.

  8. Thanks for the ideas, Kareng. We do have sugar, but no gluten-free granola, seeds, or coconut oil. I also don't have a food processor, but I think I may have to get one next time in the U.S. at the new year. In the meantime, maybe I could try making almond flour in a large wooden mortar and pestle. I wonder if it's possible to make some version of those bars without a food processor. Man, I wanted to learn to cook and have been making progress, but this is a steep learning curve when everything has to be made from scratch!


    I'll definitely try making buckwheat pancakes with just baking soda. As long as they are tasty, I don't mind if the presentation isn't perfect. This recipe looks good, if anyone else is interested: (http://cookieandkate.com/2013/buckwheat-pancakes/).


    You had a good point about considering what people here eat for breakfast. In the city, it's mainly baguettes with butter, tuna, or a cheap chocolate spread. But in rural areas, they often make a type of millet ball porridge. They make it with tons of sugar, but I could use honey instead as a sweetener. You've inspired me to ask around for recipes for this.


    Thanks again!

  9. Hi guys, apologies if it seems like this topic has been done to death, but I've had trouble finding answers that are workable for me where I live. Most of the helpful suggestions out there include either processed foods, or ingredients I can't get where I live (and nope, internet ordering isn't an option either.) I eat plenty of protein, but I'm really struggling to get enough fiber, particularly at breakfast. I usually eat an omelette with veggies in it or leftovers of some chicken and veg based dish. Does anyone have ideas for breakfast recipes I can make that don't involve any processed products and can be made with some of the following ingredients?


    What's available: Eggs, Milk, all kinds of cheeses, buckwheat flour, millet couscous, millet flour, cowpea flour, corn flour, tapioca flour, gram flour, rice, mung bean noodles, rice wrappers, many kinds of beans and lentils (some dry, some canned), peanut butter, zucchini, spinach, eggplant, green peppers, cucumbers, onions, apples, bananas, mangos, chicken, meat, and seafood, raisins, raw almonds, cashews, and peanuts, protein powder, coconut flakes, flaxseed meal (until it runs out, I brought one bag from the states), frozen brocolli, frozen peas and green beans, fresh coriander and parsley, baking soda


    Not available: any processed gluten-free products, kale, chard, safe quinoa, other nut butters, corn tortillas, masa harina, coconut flour, berries (very rarely), gluten-free baking powder, cream of tartar


    I'd love any suggestions from you creative cooks out there. There must be plenty of good, high fiber things I could make with the flours that are available or with beans. I've never made bread, pancakes, waffles, or tortillas before, so it would be a new experience, but I'm very willing to try if you have any good ideas of recipes.


    Thanks in advance!


  10. Hey designerstubble, sorry to hear it. That must be scary, though as you say, it seems most uneven heartbeats are benign. Your post reminded me that I also experienced some irregular heartbeats in the last year or so, but only while exercising. I wonder now if they could have been related to Celiac, particularly before I was diagnosed. I went to see a doc at the time (you know, since I was afraid I was going to drop dead in the middle of class) and he suggested it was just dehydration, which seemed plausible given the excessively hot and humid climate I work out it (though I hadn't had the arrhythmia in the previous years doing the same). In any case, the doc didn't think it was anything to worry about. That's very interesting if Celiac can cause palpitations or uneven heartbeats. Good luck with getting some answers.

  11. Hi Butterfly Chaser, other medical issues may well be affecting things, but from what you said about your exercise routine and eating patterns, it seems like you are aren't nourishing your body enough for all that exercise. You've dealt with the starvation mode issue before, so you know that can make your body cling to every bit of nourishment you do give it, mess with your hormones, and encourage your body to sacrifice muscle before fat since it requires more energy to maintain (thereby lowering your metabolism further). For the very high amount of exercise you are doing, you should probably be eating quite a bit more than you are. You can look for BMR calculators online, plug in your target weight as the weight for calculation, and then factor in your activity level to get the amount of calories you'd need daily to be a healthy person at that goal weight. Your calorie level will be enough to make you lose steadily, but not so little that your body perceives it as unhealthy or starvation mode. You can find some options here:


    I sometimes use the My Net Diary app to check on my dietary balance of protein/fat/carbs, and that seems to give a good estimate as well. For me, for example, as a fairly normal weight woman of 5'8" who is pretty active, it calculates that I need roughly 2500 a day to maintain and can shave off a hundred or two a day if I'm trying to lose a few pounds. It accounts for exercise as well and ups the number you can eat that day. When I do use it and look at my calories, it has been remarkably accurate and predicted correctly if my weight will head up or down based on how much I'm eating.


    People have been trying to follow this conventional wisdom that tells them to restrict calories to 1500/day or less and exercise as much as possible, but as a society, we just keep getting fatter. Clearly this approach isn't working (and I know this firsthand from years of trying it myself). The body fights the weight lost, the individual can't live forever on so few calories, and when they do start to eat more again, they often rapidly gain back what they lost and more, given their new lower metabolism, starved body, and higher body fat composition. Luckily there is a lot of new research coming out that is showing more success with an approach focusing on quality of food (with plenty of protein) rather than quantity. It sounds like you've already got the food quality thing sussed, so maybe you just need to eat more of it!


    Good luck with your tests and I hope you find some answers. Cheers.


    *I just reread your posts and see that you are only 5'1'', so your level of calorie restriction isn't as extreme as I thought. Still, though, you are getting so much exercise, you likely need quite a few more calories to fuel your body. And with eating healthy whole foods like you are, it's pretty hard to overeat. Best of luck.

  12. Ditto what CyclingLady said. Less processed foods and a lot more protein, to help you build and sustain muscle. As you are gluten free longer, you'll realize just how many things you can eat, especially when you still to natural, fresh food, and you won't feel as tied to the official gluten free shelf. Most things that are one ingredient are naturally gluten free - which in addition to vegetables and fruits includes all types of fresh meat, seafood, poultry, eggs, nuts, and most cheeses. Just be careful of seemingly simple things that have undergone some processing, such as cured meats, beef jerky, packed lunch meat, fake crab, seasoned nuts, or anything that has been marinated. For building and maintaining muscle, I'm also a big fan of whey protein powder after workouts, and you may be able to find some gluten free version that also contains creatine if that's something you are interested in.

  13. Hey designerstubble,


    Unless you are eating well over your BMR, restricting calories probably isn't the best way to go. Not giving your body the minimum it needs usually sets people up for failure. It's very hard to maintain your body in a deprived state, and doing so messes up the metabolism through muscle loss and hormonal changes, and then encourages the body to hoard any further calories it later gets as fat. Most people end up with a higher body fat composition than where they started. I would recommend you get a solid estimate of the BMR for a person of the weight you want to be and then not restrict under that. For myself as an active 5'8'' woman, I can eat 2200-2500 calories a day just to maintain my weight, so you should be able to eat at least that I would think.


    A better approach might be to focus on increasing protein in your diet and building muscle to increase your metabolism. Are you sure you are getting at least the recommended daily amount of protein? (http://www.menshealth.com/mhlists/guide-to-protein/recommended-protein-intake.php) I know that's especially hard for vegetarians to get enough, but protein helps build muscle and has been shown to make you feel more satiated and reduce appetite. If you are having trouble getting enough through beans, eggs, and other sources, you could try looking for a protein powder that is suitable for vegetarians.


    If the chips are just an ocassional indulgence, I don't think they should be causing you a huge problem. Chips do have a high glycemic index though, which could mess with your blood sugar and make you more likely to overeat generally. I was going to suggest replacing them with nuts, but I see your son has an allergy, so I guess that's a non-starter. I've heard they make bean chips, but I haven't had a chance to check them out myself. Maybe those might be a marginally better option? For your meals, if you are eating a lot of potatoes, you could try switching them out for lower glycemic index choices like millet or quinoa.


    It also sounds like your training regimen is mainly cardio, though maybe the Karate involves some strength work. Doing a couple of short resistance training workouts per week should really help you build muscle and rev up your metabolism (as muscle burns more calories than fat just to maintain itself, and any kind of high intensity workout will leave you with revved up calorie burn for up to 24 hours). Depending on your body type, you should be able to see changes in about three weeks, just with two well-designed 30 minute strength workouts a week. Plyometrics like squat jumps and jumping lunges are great as well and don't require any weights.


    For me personally, I've been really successful with the combination of a higher protein and fat, lower (but not absurdly so) carb lifestyle, along with exercise that focuses as much on resistance training as cardio. Before that I'd been eating too much pasta with no protein and doing many hours of cardio at the gym. But last year, I decided to switch my approach to health with the aim of changing my body composition, lowering fat and increasing muscle. It worked, and as a side effect, my metabolism shot up and I lost 15 pounds. What was brilliant was that I was doing half the amount of exercise I'd been doing before (but now with a mix of weights, plyometrics, and cardio), and eating as much as I wanted (but of much healther food, including plenty of protein, veg, and healthy fats). Even with the ups and downs of a lot of travel and periods where I couldn't eat as well or find the time to exercise (and not to mention the havoc that the undiagnosed celiac was wreaking on me), most of that weight stayed off without me worrying about it.


    About 10 months later, at the start of this year, I got diagnosed with Celiac. I was worried that my weight loss last year might have been partially due to malnourishment and that I'd put on weight as my gut healed. But, I've found that that hasn't been the case. A healthy diet is a healthy diet, I guess, and my weight has stayed stable. Plus, going gluten free at home was actually really easy, since it wasn't that different from how I'd already been eating. I still eat as much as I want, focusing on fresh, natural, unprocessed foods with lots of protein, veggies, nuts, and dairy. And when out with friends, I have no problem treating myself, including with far too many glasses of wine. What can you do? I learned to drink from the Brits.



  14. CyclingLady, thanks for the explanation. I was unaware of that, as my employer-provided healthcare has never asked me any questions related to diagnoses or chronic conditions. Maybe they are hoping my ignorance of disclosure rules will allow them to get out of paying for benefits in the future! I'm glad to hear that will be changing in 2014.


    As for your lowered rates, that could also be due to the new 80/20 rule that insurance companies have to spend 80% of premiums on actual healthcare. Insurance companies have had to give millions of customers refunds this summer because of this rule.

  15. Given that there is no medication that gets prescribed, does your insurance company necessarily know what the results of your biopsy are? It certainly doesn't seem fair to punish people with Celiac more than people with obesity, high blood pressure, etc, when a Celiac person can be completely healthy through diet alone.


    For me personally, I needed the endoscopy confirmation to really commit myself to going gluten free for life. Even with positive blood tests, I still didn't believe I had Celiac until I had the biopsy results (and even then, I tried to search for alternate diagnoses!). I think whether you want that confirmation for your adherance to the diet is really a personal choice. Many people on this site seem to be able to fully commit without the biopsy, but for me, lingering doubts would have been a problem and made me more susceptible to taking chances when getting safe food becomes really difficult.

  16. Thanks, Laura. That's very reassuring if others haven't found fever to be a symptom. Hopefully it was something else then. I am feeling a bit better today, though still rather weak. But I've finally been able to eat something solid, so I think I'm on the mend.


    As for antibiotics, I try not to take them unless I have a diagnosis and know it's necessary. There is so much interesting emerging science about the importance of a balanced and diverse population of gut bacteria to good health, influencing everything from weight to temperment and even potentially to the development of Celiac. That said, antibiotics do save lives, and when you need one, you need one.


    Notme, yes, Senegal is great. Good weather, fun, laid back lifestyle, and very safe. It's a weird place to be living when you discover you have Celiac, though. (I was convinced my American doc must be mistaken and that I really had a parasite, but four positive blood tests, positive endoscopy, and then the immediate results of starting the diet were pretty undeniable.) When it comes to gluten, nobody here has any idea of what I'm talking about, but, on the plus side, wheat is a much less common part of the daily diet and things are cooked from fresh ingredients most of the time.


    I have a great group of friends and they want to be understanding, but they just don't know anything about Celiac or about how it differs from standard allergies. I can tell they think I'm overdoing it when I obsess over whether the silverware has touched anything with gluten in it or ask to look at the packaging for ingredients that have been used in cooking, whether that means a restaurant worker bringing out a huge tub of mayonnaise or my friend looking through the trash for a chocolate bar wrapper. But, I don't know anyone else with Celiac personally. All my info comes from books and websites like these, and they've taught me to be hypervigilant. I wouldn't mind chancing it if the consequences were just some unpleasant toilet trips, but the long term health consequences are scary.


    Thanks for your responses guys. They help me feel less isolated on this weird journey.

  17. Notme, thanks for your response. That's good that you can at least predict the progression, recognize the early symptoms and then prepare for what's to come. I hope I can get to that point. How long did it take you to be able to distinguish between your response to gluten and soy? If the digestive reaction can take 24-48 hours to kick in, that does make it harder to pinpoint what caused it. I think that's what I'm struggling with most at the moment, knowing what any digestive system reaction means and pinpointing what is was to. Thankfully those reactions are now quite rare ever since I started the diet.


    I have read the Newbie 101 thread, and several books on Celiac and gluten free. I've told my friend about the cutting board thing, flour in the kitchen air (her husband is an African chef and baker), etc., and she has listened. But after we discussed all that once, she is now defensive when I ask the same questions every time to check, and you just can't be as sure that someone else will think of every little possibility like you might. I'll read that post again and see if it might be something I could persuade her to read.


    And Senegal is in West Africa by the way. It's a very pleasant place to live as an ex-pat, but a healthy immune system definitely helps!

  18. Hey all,


    So how do you know if it's a glutening or something else?


    Since my Celiac diagnosis, I've been gluten free six months. I've never knowingly ingested any gluten since starting and have only once had pronounced symptoms of something that could have been a glutening, after eating at a friend's house. I'm still trying to figure out, when I don't feel well, if it could be the result of ingesting hidden gluten or if it is just some other bacteria or irritant. The complicating factor is that I live in Senegal, and while `i  have any stomach issues (aside from those related to gluten), there is always a small possibility that I could have been exposed to a nastier food or water-borne bacteria.


    So, yesterday evening, out of the blue, I suddenly got quite sick, with very unpleasant D, severe nauseau, loss of appetitie, and a low-grade fever. 18 hours later, I still have the same symptoms, but less acutely. Before I got sick, I hadn't eaten anything in a few hours, except for a bag of commercially packaged water, which in theory should be mineral water, but I suppose could have been contaminated with something. That morning and midday, I had eaten at home things I cooked myself and eat regularly without incident. The day before getting sick, I had eaten out twice, including a lunch salad at a place that takes my 'allergy' very seriously, and dinner at the house of a friend who is always thinking about what is or isn't gluten free for me, though I sometimes worry she may be a bit overconfident and not consider all possible sources of contamination.


    Now I'm trying to figure out if I could have been accidentally glutened and it took 18-24 hours to kick in, or if it's more likely I got some bad water or was exposed to some longer-incubation-period bacteria in the beginning of the week. Do these symptoms sound like a glutening or is it more likely to be bacterial? Before my diagnosis and the one time I think I was glutened since beginning the diet, I didn't used to have nauseau, so that is making me think it could be the latter option. But, I know from reading these boards that people's reaction does get worse over time, the longer they are on the diet.


    I'm curious to know what those of you with more experience of glutenings think and how you distinguish when you've been glutened from when you may have just eaten something bad or caught a bug.





  19. That must be tough to be intolerant to corn as well! I haven't done much baking yet, but I'm counting on being able to make corn tortillas and continuing to use corn starch as thickener in homemade curries. 


    I agree about the seasoning cubes. Senegalese food is delicious without it, so it really doesn't need it. But people are pretty addicted to it here now, and the marketing is everywhere. As you say, traveling will be a challenge, not only in terms of what I can eat, but also in terms of being offered food in people's homes. It's so rude to refuse to eat with your hosts. Your strategy of heavy on the rice and maybe just a taste of the sauce is probably a good approach.


    When you eat Thai, do you worry about Oyster Sauce? The Thai here told me they put it in most things, which I didn't realize was a problem at the time. That was only two days into my diet, and I did have some brief gastro symptoms the next day, but I wasn't sure if they were related. Next time I'll have to ask to see the Oyster Sauce bottle, and possibly have them cook without it, but I'm not sure how that will affect the flavor. I also haven't found any wheat-free soy in Dakar yet, so I may have to do some creative sourcing on that. Are all rice wrappers suspect or just some that you were offered? We have rice wrappers from Vietnam that only list rice flour as a starch, and I also get Chinese bean vermicelli that uses corn starch along with the beans. I've only once seen rice cakes for sale, in the special diet section, but I'm hoping they reappear at some point, along with the one type of gluten-free 'Maria' crackers. I can live without bread and crackers, but I really do want something to put all this nice French cheese on from time to time. Cheers!

  20. Hi Mistinguette, thanks for your response. That's great that you found it so easy during your 10 days in Nigeria. I travel a lot in the region and don't yet know how eating gluten free on the road in West Africa will go. As you mention, Maggi seasoning and Jumbo spice cubes have become ubiquitous in Senegalese cuisine, which would otherwise be gluten free. Families and restaurants spend hours cooking a single traditional dish to be eaten communally, so it wouldn't be possible for me to get a serving without Maggi unless I ordered a special preparation (probably with at least 2kg of rice) hours in advance. 


    At home in Dakar, I cook for myself a lot and eat out at restaurants that in theory have a lot of gluten free options (fresh seafood, Thai, Japanese, etc.). But, I'm still trying to figure out where all the hidden traps are. I thought the Thai was fine because they don't use soy sauce, but then discovered that Oyster Sauce also normally has gluten. There are fresh meats, seafood, and veggies in the supermarket, but buying anything canned or processed, even just sauces can be complicated since they come from France, Spain, India, China, etc. The ingredients may not be listed in English or French, and when they are, I still don't know what the labeling requirements are in each manufacturing country. I'm only on day 11 of my gluten free diet, and it's going to be a long learning curve not knowing any other Celiacs in a similar situation to ask questions of.


    Your experience in Nigeria is definitely encouraging though, and right now, I'll take all the encouragement I can get. Cheers!

  21. Hi all,


    I'm a recently diagnosed Celiac living in Senegal. I'm wondering if there are other Celiacs in this forum currently living in Sub-Saharan Africa. The Africa-related threads I can find on here seem to be pretty old. I've just started my gluten-free diet 10 days ago and so far so good, I think. Dakar has a lot of fresh food options and quite a lot of restaurant fare that seems to be naturally gluten free (for example grilled fish and an excellent Thai restau).


    I'd love to know how anyone else living in Africa has coped or is coping with being gluten free. It seems like there will be advantages (much less reliance on wheat in the local cuisine and less consumption of processed foods) as well as disadvantages (zero awareness among the general population and the food service industry).


    Anyone have any experience living and traveling gluten-free in Africa, particularly West Africa?




  22. Raw almonds, an apple, and hard cheese are some of my go-to's to carry around when out. When I have time and need more food, I'll pack a salad with homemade dressing, some precooked chicken and veg, and maybe a yogurt. I also find a scoop of whey protein powder to mix with water can be good in a pinch, such as on long plane rides or when stuck late at work.