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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
Hmm, the BMR calculator link didn't show up, so maybe they aren't allowed. If this doesn't work, just check out the fat2fit radio bmr calculator. They have a very sensible approach to weight loss and their bmr calculator generates a table that tells you what your goal weight calories would be for your given activity level. (http://www.fat2fitradio.com/tools/bmr/)
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.
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.