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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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  1. I know what you mean - I always hated birthdays in school because everyone would stare at you during the singing! For that matter, I never sent anything back or liked to ask too many questions of waiters, etc. In some ways, celiac has been good for me, learning to do these kind of things; it's gradually getting easier. Although, sometimes, I will avoid a situation if I feel too overwhelmed to answer questions. Mostly though, I enjoy talking with people about celiac if they seem interested. I think it's funny that I ended up having celiac when I'm so embarrassed about talking about digestive symptoms. The most I'll ever say is "GI problems". Nobody, except those who are dealing with stuff themselves, has ever gone further, and nobody's ever - even when they have a laundry list of symptoms - asked me more questions! Sometimes I'll say something like your body can't absorb nutrients from food - without the details. "Multisystemic autoimmune disorder" ... and mention symptoms like fatigue and migraines. One thing to remember is that most people don't embarrass that easily about this stuff, so it's really about your comfort level. (And that that's important too). And, I too, when in public will sometimes default to food allergies, or even just "funky food issues"! Lucky you to have found some people to talk with.
  2. I'm at almost 2 years since dx; a lot of things have gotten better, but I think I might still have some issues. I'm not sure. I had symptoms of celiac for at least 8 years pre-dx, and possibly another four years before that. I don't know what's it like to be an adult without health problems, even if my general health isn't dreadful now and wasn't always dreadful then. What, for example, is a normal energy level? Normal GI function? How do I know if I have more bowel movement than normal or if they're normal? If something is celiac-related or just the fact that the last time I was truly healthy I was in my early 20s, and now I'm in my mid-30s, and maybe I just have less energy because, well, I'm not in my early 20s any more. Is my insomnia celiac-related? My migraines? Is it weird that I'm tempted to eat a fresh-baked loaf of bread, not because I actually want it, but because I would kind of just like to watch myself as a science experiment to see what would happen? My blood tests came back good, that I was compliant with the diet and I'm extremely careful - I live alone so it makes it relatively easy to be pretty careful. But I find it hard to believe that eating out, etc., that I've never been glutened. But I'm not sure ... I don't know how it'd feel. And, while I have bouts of D or fatigue, I can't tell if they're just regular or brought on by something. I mean, shouldn't I be having a really dramatic reaction? I'm not sure what I'm asking, I guess I'm just having some trouble coping. I usually cope pretty well, but I think I was hoping on some level to have more energy and health than I do once I got better. Like I've been holding my breath, waiting, and now I just feel like, well, is this all there is? Is this as good as it gets? I've had a little distance from when I was really sick, in the hospital and all, and it just doesn't seem that different. I KNOW it is, but it doesn't *feel* that way emotionally, and sometimes I wonder why I'm doing this. I guess I'm just looking for someone to listen; so thanks...
  3. I've noticed my vision changing since going gluten-free; in fact I literally *just* made an eye appointment before going online. If you're having rapid changes, you should definately get checked. Presbyopia is a slow change, so that doesn't sound quite right. However, I think I'm noticing so much more about my body and health since going gluten-free that some things seem new or rapid that have been happening for a while. Dangerous Grains suggests that the newly dx'd/gluten-free should hve their eyes checked quarterly becuase of the possibility of rapid vision change.
  4. Thanks for the comments! I too always thought they were normal -but I'm learning a lot of quirky things I thought were normal were celiac disease. I ran out of my old toothpaste (Crest) not long after being dx'd, and used a some small travel ones, then switched again to a full-size Crest (which I thought gave me a rxn), and then to Tom's of Maine. Maybe that's why I had more after dx - all the changing. I know all of these have sodium laurel sulfate - I might try switching to one without. I'm fascinated by the garlic; I haven't eaten much since dx, but maybe I'll try it with the next outbreak! thanks
  5. Hi Liz, It sounds really rough. It's hard out-of-school how to figure out these things, in school it must be so much worse. I had a couple of thoughts . One, check into Thai and Vietamese food. I think there's a number of things that are ok to eat at both for the gluten-free diet. I have a book called Let's Eat Out! Your Passport to Living Gluten and Allergy Free, by Kim Koeller and Robert La France. It's got a whole chapter on Thai, with a sample menu of possible Thai foods and what specifically to check on while ordering. Pad Thai, for example, looks pretty ok. You might go to the restaurants on off-hours and talk to the managers - if you eat there a lot it'll get easier. My other thought was about stocking the freezer at the sorority house with gluten-free pizzas and cookies. Maybe they'll let you have a toaster oven in your room or the kitchen that's just yours. It can warm up things really fast from frozen. Granted, it's not as good as ordering the pizza, but it won't take any longer, and you'll be eating the same kind of food. Same with the cookies. I'm sure you can get recommendations on the boards for good ones, and even thought they're expensive, so are delivery pizza and, I assume, cookies! Better than making yourself a sandwich, maybe. A cookie bakery that delivers! Wow. I wish I had a better solution to offer. Good luck with everything. grey
  6. I've been gluten-free since the end of May, but I'm still really struggling with some of the neurological symptoms of Celiac Disease. Among others, concentration, focus, memory, and aphasia. My therapist ran through the DSM manual for ADHD and I meet all the criteria. Several family members have been dx'd as adults or children. She brought up the possibility of medication; that maybe the meds for ADHD might help me with the brain fog and neuro symptoms until I heal more. Or maybe in general, because maybe this is separate from the celiac disease. So... my question is - has anybody had an adult ADHD dx with Celiac? I found some literature on medline that suggested the gluten-free diet could help ADHD, but what about vice versa? Can adhd meds help Celiac? I'm scared of more meds, but I'm also so tired of being confused and out-of-focus. Thanks
  7. What is ora5? Is it a topical thing? I'd like to have some on hand. It took the last batch a really long time to heal and they were excruciating. Is it over the counter? Yeast overgrowth is interesting and I need to look in to that. I'm already on B12 injections and a low-acid diet - which improves other things, but not this, sadly. thanks
  8. B 12 Deficient

    When I was first dx w/ low B12 (2001?), my rheumatologist did a Schilling Test. It was negative for PA and so he told me I was just depressed and should take a multivitamin! I would imagine that you have a better doctor than that (I hope), but don't let them tell you the Schilling Test is the 'gold standard'. It's REALLY old-fashioned and is pretty inconclusive. I now give myself B12 shots every other day (it was monthly, then 3 weeks, then weekly ... then the IV after my celiac dx). I bruise a lot as well, but the B12 shots are all that's kept me going for the past years so I'm hesitent to switch. Still don't know if I have PA - there's a family history - but my gastro said it didn't matter since I'd be getting the B12 & gluten-free no matter what. My PCP assumes PA, but I'd like to know. One thing about B12 is it's a vitamin you can't overdose on. If you have too much, you pee it out. Also, often, the amount you need if you're deficient is wildly more than normal people. If you can digest it by stomach, make sure you're getting animal products in your food. Vegans will be deficient, for ex, w/o supplementation. B12 can make a HUGE difference when you make up the deficit, and very quickly. Hope it helps you. All best!
  9. I'm glad to hear it's not lupus! Be careful with the soy milk (you probably already know this), some are NOT gluten-free. I use almond milk; I think it tastes a lot better and it's less soy (especially soy lecithin) which causes problems for a lot of us.
  10. On replacement milks - I love the Pacific Almond milk. I've used in place of milk in smoothies and once in cooking and it did fine. And it tastes great on cereals. Be careful with replacement milks - a lot of them have gluten and soy, even if they're rice milk, for ex. and it varies by brand. Really check the labels.
  11. I'm still struggling with healing, but it has gotten better since I was dx'd at the end of May. I didn't notice much improvement for the first month. Cutting dairy and soy, and avoiding raw veg. and most raw fruits has helped a lot. Your intestine needs a break! And, while some people have a near-instant change, more take time. You just started-it took years to damage yourself - give yourself some time to heal. Also, have you been checked for vitamin/mineral malabsorption? Getting my levels up helped, as did cutting out some medications (on doctor's orders and under observation). It turned out I wasn't absorbing some meds right because of the celiac so they were damaging other parts of my system. I also had one med I was taking that had gluten in it, and getting rid of that definately helped! Btw, getting rid of nonstick, plastic and wood from pre-gluten-free days is important. If there are scratches in the nonstick, for example, it's impossible to clean the pan well enough to get rid of the gluten (it's pretty sticky, too). Metal and glass seem to clean better. good luck
  12. It is hard to do on a budget! My main suggestion is to check out your local farmers' market. I don't know where you are, but there's probably one nearby on a Saturday morning. Kale at the supermarket? $2.50/bunch. Kale at the farmers' market? $1/a bunch. Organic eggs at the farmers' market are cheaper and my market also has a bunch of meat vendors. It's great because I can meet the people raising the pigs, cows, elk, whatever and they tell me exactly what they fed and how they treat their animals. I know it's antibiotic-free, non-GMO and it's cheaper. I don't know what I'm going to do when the markets end in October! There are also CFAs in many parts of the country, which I think stands for 'community farming association'. You join and get a big basket of fresh veggie/fruit each week. You don't know necessarily what you're going to get beforehand (what's ripe/ready!), but it can be a big savings if veg is one of your $$ items. You end up eating seasonally, which is healthier, and it supports local farming Remember to save receipts, etc. because the difference between gluten-free food and regular food is tax-deductible if medically necessary. The other thing I do, as another poster suggested, is cook a lot from scratch and avoid processed foods. But, it's time-intensive. Look also to your drinks-buying organic juices and sodas is very $$
  13. There's also an autoimmune disorder called Sjogren's Syndrome. The glands that produced mucus, salvia, and tears get inflammed or destroyed. Problems with the pancreas can also cause dryness problems. An ophthamologist can check on Sjogren's; it can be fairly mild, I think, and any time you have an autoimmune disease, you are more prone to another one. I too have 'sandy' eyes and a sensitivity to light, but no idea what's causing it. I have always assumed too much staring at the computer screen, fatigue, and migraines. I'm interested to keep reading this thread. Good luck with your eyes!
  14. My arthritis pain got worse after going gluten-free. I've been doing occupational therapy on my hands and while my wrists are improving (tenonitis too), my hands are still pretty painful. My neck doesn't seem to have gotten worse, too much. I agree that celiac has a loud voice. As some of my other pain (digestive, migraines) has receded while gluten-free, other things have gotten more noticeable and more painful. I'm in my early 30s too, and I get frustrated too sometimes about things like arthritis and osteopenia, not to mention the brain fog. I can't imagine what I'll be like in 20 years. I just keep hoping the gluten-free will slowly improve things - it took years to do the damage, it might take months or years to repair. Good luck.
  15. Like Beth, I also ended up with an ulcer from NSAIDs. I also don't tolerate Celebrex and advil anymore, I get a severe fatigue rxn (like I needed more fatigue) and I'm allergic to percadan/percacet. The pain before dx was pretty bad, and I ended up with Alleve (because I could tolerate it, I thought) and other drugs for migraines. Both turned out to be doing a number on my liver and kidneys, as well as my electrolyte levels. Now I have Tramadol, which is from a different family of pain killers, for pain and take it with a tylenol (as prescription) - one bonus is it doesn't make me extra-woozey. I've learned to be very very careful with OTC pain relievers! I'm also a huge fan of hot baths, heating pads, and microwaved hull pillows. And massage; it sounds a bit silly but foot and hand reflexology have been helpful to me. My digestive pain decreased dramatically, although it didn't go away, about 6 weeks into gluten-free. I'm also pretty careful about eating to digest foods, more so than I was before dx, which has helped. Good luck!