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About Sinenox

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  1. In my relentless search to try to figure out my issue a few years ago, after trying a bunch of different exclusion diets in addition to gluten-free (soy, corn, dairy, nightshade vegetables, refined sugars, etc) I tried FODMAPs. It was more difficult than any of the other diets only in the sense that keeping all of the rules in your head is pretty hard. But it actually gives some flexibility to those accustomed to a gluten-free diet. I spent a long time looking at what was available from my local grocer and putting together a plan. I've included a shopping list and a menu for starting the FODMAP diet, below. I live in the USA and have seen these products in many stores in different states so I think this may be helpful. It is only worth noting that I made this a while ago so it may be worth checking in case ingredients in anything have changed. I hope maybe this will help someone. Here is the most complete list I could assemble from trusted sources. The List ("High goodbye, Low's good to go") Vegetables: High (excess fructose): Sugar snap peas Sweet Corn High (excess fructan): Artichoke Asparagus Beet Brussel Sprout Cabbage Celery Chicory Dandelion leaf Fennel Garlic Leek Legumes/Pulses Okra Onion Pea Radicchio lettuce Shallot Spring onion (white part) High (excess polyol): Avocado Cauliflower Mushroom Snow peas Tamarillo Low: Alfalfa Bamboo shoots Bean sprout Beans (green) Bell pepper Bok choy Broccoli (+/-) Carrot Celery Chives Choy sum Corn (+/-) Cucumber Endive Eggplant (+/-) Ginger Lettuce (+/-) Marrow Olives Parsnip Parsley Potato Pumpkin Silverbeet Spring onion (green section) Spinach Squash (+/-) Swede Sweet potato Taro Tomato Turnip Yam Zucchini (+/-) Fruits: High (excess fructose): Apple Mango Nashi Pear Persimmon Rambutan Watermelon High (excess fructan): Persimmon Rambutan Watermelon High (excess polyol): Apple Apricot Avocado Blackberry Boysenberry Cherry Longonberry Lychee Nashi Nectarine Peach Pear Plum Prune Watermelon Low: Banana Blueberry Cantaloupe Star fruit Cranberry Durian Grapes Grapefruit Honeydew melon Kiwi Lemon Lime Mandarin Orange Passion fruit Paw paw Pineapple Raisens Raspberry Rhubarb Strawberry Tangelo Dairy: High: Cream Ice Cream Milk Milk Solids Sour Cream Yogurt (+/-) Low: Aged Cheese Clarified Butter Lactose-free milk Lactose-free yogurt Proteins: High: Legumes/pulses Soy beans Low: Meats Soybean extract Sweeteners: High: Agave Nectar Corn Syrup Fructose Fruisana Honey Inulin Oligofructose • isomalt, maltitol, mannitol, sorbitol, xylitol Low: Golden syrup Treacle Molasses Maple syrup • White, brown, raw & castor sugar (sucrose) • nutrasweet, sucralose, aspartame, stevia, saccharine, tic tacs, minties, regular gum Other: High: Gluten (wheat, barley, rye) Butternut Squash Cashew Chocolate Chick peas Fig Lentil Pistachios Low: Almonds (+/-) Tea, coffee, & herbal teas Nuts & seeds (+/-) Psyllium. Rice bran Pumpkin seeds My suggestion is to print it out, highlight the ones that are a part of your regular diet, and put it somewhere you'll see when you're considering food (like on the fridge). Examples of Terms: Fermentable: The process through which gut bacteria degrade undigested carbohydrate to produce gases (hydrogen, methane and carbon dioxide). Oligo-saccharides: Fructo-oligosaccharides (FOS) found in wheat, rye, onions and garlic, Galacto-oligosaccharides (GOS) found in legumes/pulses. Di-saccharides: Lactose found in; milk, soft cheese, yogurts. Mono-saccharides: Fructose (in excess of glucose) found in honey, apples, high fructose corn syrups. Polyols: Sugar polyols (eg. sorbitol, mannitol) found in some fruit and vegetables and used as artificial sweeteners. The Grocery List 1-Lactose-free milk (Lactaid, skim) 4-Lactose-free yogurts 1-Bread (Udi's white sandwich) 2-Cheeses (hard cheeses aged 90+ days) 2-Deli Meats (Applegate Farms Organics, roasted turkey breast, uncured slow baked ham) 1-Lettuce, romaine 1-Mustard (Grey Poupon, dijon) 1-Tea, peppermint 2-Juices (Simply limeade, Simply lemonade with Raspberry) 1-Carbonated beverage (San Pellegrino, orange) 2-Oatmeals (Glutenfreeda, strawberry and cranberry flavors) 1-Cereal (General Mills gluten-free Corn Chex) 1-Noodles (KaMe vermicelli) 1-Pasta (Schar, Tinkyada, NottaPasta or Jovial) 2-Meat cuts (100% bison, 100% pork) 2-Popsicles (Natural Choice, coconut and raspberry) 5-Potatoes Assorted veg (cucumber, carrots, spinach...) Assorted fruit (bananas, frozen blueberries, strawberries, oranges...) 2-Rice 1-Frozen Bagels (Joan's Great Bakes) 1-Pancake Mix (King Arthur Flour) 1-Soy Sauce (SanJ Tamari, gluten-free) 1-Syrup (100% Maple) 1-Polenta (Food Merchants Organic, Traditional Italian, roll) 1-Ginger (fresh, uncut) and other seasonings I checked the ingredients on every package, and followed the list above. (NOTE: This was in 2013(?) things may have changed, be sure to recheck ingredients.) I also determined that canola/rapeseed is okay, whereas honey and locust beans (as ingredients) are not. Almonds seem to be borderline. The Meal Options Breakfast: cereal, toast w/jam, pancakes w/syrup, oatmeal, yogurt, fruit Lunch: cereal, sandwich, noodles, bagel Dinner: sandwich, noodles/stir-fry, pasta, rice+meat, meat+veg Snacks: fruit, bagel, popsicle, cereal, oatmeal, toast, yogurt, tea I hope this is helpful to someone.
  2. I haven't posted here in years, but I thought others might have the same problem so I wanted to throw this out there. This isn't a better diagnosis by any means, but it might make sense for some with atypical experiences like mine. I have been sick since I was a teen, went from being a competitive athlete to unable to run for a few minutes without feeling very ill, eventually couldn't run without throwing up. Started suddenly and just kept getting worse, same time I began to get intense headaches (the kind that make you unable to stand or breathe for a moment). I also kept having these "attacks" that all of my specialists over the years claimed was too severe for Celiac (runs in the family but genes inconclusive, elimination diet stuck though and I'm fully gluten-free always, allergists claim I have a wheat allergy but bloodwork and skin tests don't show it). Progression of a normal "attack": 1. Feel something very wrong, often in the middle of the night ~4-5 hours after eating gluten (supports allergy according to immunologists) though I couldn't always find the source. Sometimes feels like there's a snake in my gut, otherwise general sense of impending doom. 2. Try to run to bathroom, sometimes pass out for a few seconds around here, brain and body seem to be moving at different speeds. 3. Intense and rapid hot/cold flashes, relentless abdominal pain begins to set in and worsens from here on. 4. Vomiting and diarrhea, often at the same time. Excruciating 10/10 worst experience ever abdominal pain that just will not end. Curl up on bathroom floor, intense thirst, sometimes hot/cold flashes subside. 5. Eventually I pass out and when I wake up I feel better, though I may still get a bit sick for a while. I have had every test in the book and many specialists in 5 states. No one can figure out exactly what is going on. The only hard data point (most tests are "off" but not in any suggestive way) is that after a minute of exercise my venous lactate is the highest that exercise physiologists, or anyone else, has ever seen in a not-about-to-die-from-trauma person. This has been noted in the literature for CVS, as well as wheat or gluten as a trigger. All of my literature searches brought up Cyclic Vomiting Syndrome, but since the definition never included the abdominal pain (the chief complaint in my opinion) or wheat I didn't much consider it, although it fits. I finally got around to a bunch of neurology testing and sure enough one of the mainline treatments eliminates the headaches and attacks (so far) entirely. I don't react to gluten now except to get intense brain fog, which is not worth it, so I'm still dedicated to a fully gluten-free diet. If you've always had a similarly weird constellation of symptoms, it may be worth checking in to CVS. It's rare, and it takes some strange forms in adults. There are no concrete tests, but the first remission of my symptoms in 15 years is enough for me. Being direly ill for a very long time and having no one believe you is terrible, but I just wanted to add that there is hope, if you just keep seeing new people with new ideas.
  3. I confirmed with a chemist at Watson Pharmaceuticals that Reclipsen is gluten-free as well. It uses corn-based starches as filler.
  4. Hi there, Watson Pharmaceuticals, the manufacturer of Reclipsen, is hard to pin down. I had to call them a few times, but I was routed to their laboratory, where I spoke to two technicians named Brendan and Andrew. They both confirmed that there are no gluten ingredients in Reclipsen, and that the starches used are based in corn. To the OP: Reclipsen is a birth control pill that is sometimes used to treat endometriosis. You may want to check it out. I'm pretty sensitive and I haven't had any problems.
  5. My partner was recently diagnosed with narcolepsy, which is currently considered an autoimmune condition as well, and many people on the Narcolepsy Network report doing better after going gluten free. I mention this because the only condition in which it is common to "hear voices", besides schizophrenia, is narcolepsy. You may want to ask your doctor about having your daughter checked for narcolepsy via MSLT (sleep study). Vivid nightmares are also a common symptom of the hypnopompic and hypnogogic hallucinations associated with narcolepsy. Just a thought!
  6. I can see how that would be confusing. So I was sent to Italy for my career and I was in this one area for a month. I was "forced" to eat gluten because I could not avoid it in the food I ate there. There was not gluten free food available. Even the salads I would order had cross contamination issues like crazy. Them's the facts. That part had nothing to do with will. Since I've gotten back, my diet has been somewhat within my own control. "Somewhat" I say because having moved to a new area things that by all rights and diligent research should be gluten free and would be where I used to live are not. The point where willpower comes in relates to risky behavior (which is nonetheless hard to get around) related to what I eat and how likely it is to be cross-contaminated. And yes - I know Italy is made to sound like heaven, but the fact is that where I was it was much harder than it would have been in other parts of Europe or in the U.S. to get a gluten free meal. The salad dressings, stocks, cheeses, sorbet of all things...not once gluten free. Don't even bother with risotto - what a nightmare. And they put bread in and on everything (I'd love it if I could eat it, mind you). Fruit and steak. That's what I ate successfully most of the time. Even the few gluten free packaged items I did find made me sick. Yes, exactly. I think you understand what I meant by "tolerance" - I should have given a definition. The part that I think I'm still having a hard time getting across is that I absolutely want to be gluten free. This problem is purely logical. It doesn't arise from a place of emotion or addiction (though cloudy thinking is a good point). It comes out of the recognition that having another glutening of some severity could cost me my current career track. When I have my career on one hand and my long-term health on the other (and my body screaming not to be in that much pain or stress again soon in between) it's hard to convince myself that being more careful is worthwhile right now, though I know in the long term it's incredibly important. It's a little bit like trying to convince yourself to stick your hand in a trap. I feel as though I can tell myself what I should be doing, but I have a very physical reaction to the prospect of having another incident like the last one while in school. I also have to travel a lot to collect samples and as I mentioned I don't really do the "safe" touristy stuff. The prospect of being incapacitated while isolated and alone in the field of a foreign country has weighed into this decision as well, I suspect.
  7. My experience with this has been that no matter how it's down-played, your failure to eat exactly what everyone else is eating is the source of that attention. In a tight-knit competitive atmosphere where you don't control your own schedule, there just isn't any getting around it. That bit about being the quota-filler is interesting! I've never even considered checking on that. Wouldn't it be fascinating if they both listed your disability and failed to accommodate for it. That's easy when you've never had the experience, I suppose. I asked my friend the sociologist to weigh in on this rights-to/rights-from issue where food allergies and the like are concerned. He gave me a book recommendation: Stephen Mennell's "The Sociology of Food: Eating, Diet and Culture". I think I'll pick it up. If anyone else is interested in the read we could have a chat room book club.
  8. I am in an environment very much like that described above and unfortunately "suck it up" doesn't tend to apply where social gatherings of this nature are concerned, at least for some of us. Going out and not eating is great - but can you do it twice a day and eat in your office without people taking exception? Many of us are too young to rent a car and often meals are provided instead of a per diem. It's frankly a lot like drinking. If you're at the bar with everyone and you're not drinking - even if there's a perfectly good reason - everyone else tends to get a bit uncomfortable. Still going and not eating makes you the interloper and that can be lethal to your career in certain lines of work. I would desperately like a good behavioral answer to this question. It's been a big problem for me as well. When I bring my own food people get upset and when I confront the secretary about considering some gluten free fare (little of which exists around here) she tells me that one person is not enough to inconvenience the rest for where meals are concerned. Tarnalberry's suggestion about confidence has helped me sometimes. I just wish there were some kind of magical social meme that could improve this situation.
  9. Thanks for all of the replies, guys. It's not an issue of making excuses or of wanting to eat gluten - I can assure you that I learned quite viscerally how bad the gluten was for me, long ago. I am eager to get back to my completely gluten-free lifestyle. I even got an ulcer over all of this stress about eating the gluten again. I desperately want to be gluten free and I completely agree that the long-term complications of celiac would be far worse for my career. Here's the problem: I was forced back into a diet that contained gluten (went through all of my reserves, went to every shop and restaurant in the little town, spoke to everyone I could, couldn't afford to pay for a cab-ride out even once a day). I became less sensitive to gluten overall. When I moved to this new area for grad school, I got glutened a LOT (as is somewhat inevitable in every situation when you move to a new place and you're expected to eat out with professors and peers and visiting scholars and you haven't felt out the lay of the land, etc...some times things claim to be gluten free and just aren't and you learn that the very hardest way, as per the recent ChicagoTrib article). When I started to lose that "tolerance" or numbness I guess...I was horribly ill for long periods of time and literally couldn't get up off of the floor. This was considered completely inappropriate by my program that doesn't have a feel for what the Celiac Disease entails or why it should make me miss anything. People there get upset if I haven't checked my e-mail in a few hours. Explanations look like excuses. I'm stressed both about being on the gluten and about the prospect of missing even one more class or meeting due to a slip-up beyond my control. The last glutening was worse (if that's even possible) for the fact that I was laying there thinking about all of the obligations I was falling through on. My advisers and peers really have changed their opinions of me since that time and they made it clear to me that sickness really isn't an option. So what can I do? By all means I don't want to seem helpless - that is how I feel, however. Again I very much appreciate your input.
  10. We're starting a biweekly support group in New Haven. You're welcome to come though it may be too far for you to reasonably drive. Aiming for a start date in December.
  11. I may be really sensitive but I didn't get over the continuous low-level "yuck" feeling until I gave in to replacing everything and using exclusively my own new stuff - including non-scratched and non-porous materials such as baking sheets, plates and cutlery, plastic tupperware, etc. Just my two-cents.
  12. I've been gluten free for a few years. I was quite strict in the beginning, felt out my boundaries, realized how much I could be hurting myself and took only calculated risks. This last summer I spent a couple of months in rural Tuscany. I don't travel the way most people do - so all of that nonsense about how great Italy is for Celiacs was just that. If you're in a major city, it is fantastic. If you're in rural areas you deal mostly with people who have no idea what you're talking about, even if you speak a bit of Italian. I could have some gelato and drinks but for main courses I was looking at carefully guarded salads or risottos, and I was still glutened so often that I developed a tolerance to it again. This has presented a major problem and I would very much appreciate some input on how to solve it. After I had been back a few months I realized that I was not-entirely-consciously maintaining that tolerance. Who could blame me? When I get it normally I end up in excruciating, relentless pain. I also get the shakes, extreme hot and cold flashes and a whole (and literal) mess of terrible physical and neurological symptoms that take me out of commission for days. I'm not the lingering kind either. If I can go to work with moderate confidence that I wont make other people extraordinarily uncomfortable I do so, absolutely. I'm working in a pretty high-stakes environment now and since I'm adjusting to a new region I've been glutened a few times after moving to my new home. Those few times cost me quite a lot. Many of my symptoms are rushing back in force now but not the ones that cause serious pain or incapacitation. I've been forced to admit that I am engaging in more risky behavior because I am afraid of what might happen if I lose the tolerance again. The glutening really is terrifying and stressful beyond words. I recognize that I am hurting myself in the long run but this time that argument has not been effective. I'm grateful for any advice on how I can handle this.
  13. My understanding was that Rice Dream was at the lower threshold of what can be tested. If that's the case, what is to say that any of the other milks could be considered better? How can we be sure that they aren't processed with/exposed to gluten?
  14. It really is a rollercoaster ride. It's even harder to remember that when you feel great 3 months in and then crummy 1.5 years in, yet again. It takes time. This was the very hardest part for me - accepting that yes, it really was going to take more than 2 years for me to feel truly better. It was particularly hard because there were a lot of inexplicable ups and downs in between that nobody told me about, it wasn't an even gradient from worse to better. The trial and error with a lot of food doesn't help either. Stick with it and always investigate first, it may be a bad batch of questionable food after all. It's a good excuse to take time out for you and invest in things that bring you pleasure or solace, create rituals that will make you feel better. Having a plan for when you get glutened or feel really crappy is always preferable.
  15. Hello. I have just moved in to New Haven to start a PhD as well. I have found the local restaurants sorely lacking, unfortunately. I would love to get together with other local celiacs (particularly other grad students) to cook and discuss. Let me know when you get into town. I would be happy to help to organize something a little more formal as well, if you're interested.
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