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
I've know about having celiac disease for almost a year now, and I'm one of those people for who a gluten free diet alone does not seem to work. I was constantly thinking I was getting 'gluttened' by my husband and my son's crumbs, or by some cosmetic that I had not checked. Frustrated, I dedicated a significant amount of time searching. What I found might help many others.
Like many other people with celiac disease, I came to the conclusion that I have a 'leaky gut'. When I was first diagnosed, reading those two words together was repulsive. I did not want to consider that in addition to the realization that I have a disease, I also have significant damage to my intestines.
For all of you out there who think they've tried everything, and are so frustrated because you get 'gluttened' every week or few days, PLEASE pick up the books the Specific Carbohydrate Diet and Gut and Psychology Syndrome. These books go into quite a bit of detail explaining why people with celiac disease and other digestive disorders have permeable intestines and how this is connected to many other ailments.
The diet that these books (and websites-just google them) recommend is to have no grains and no starches (potatoes, yams, etc.), and most importantly, NO SUGAR. After the introductory protocol to this diet is followed, it is basically the same as a paleo/primal diet, which makes sense, because these diets are fashioned after what humans are known to have evolved eating before agriculture only 10,00 years ago. It makes sense that many of us have not evolved to incorporate high carb foods well, especially the overly processed versions of the last 50 years.
I am doing so much better now that I'm following the diet. I can't even begin to describe. I can even brush off the croissant crumbs from my son's shirt with my bare hand without freaking out that I'll get contaminated!
I hope this helps some people. SCD/GAPS, Etc., is a pretty strict diet, but there is tons of online support.
I get the same problem. I wrote a post about it some time ago and received some suggestions. What has really worked for me is eating a couple spoonfuls of ground flax seeds daily. You have to make sure to drink plenty of water so that they don't make matters worse. My favorite way to eat them in in a smoothie with banana, strawberries, blueberries, spinach, and a little honey. Yes, that's right, I said spinach! It's the yummiest treat and even better because I know it unplugs my guts. At the same time I started taking the flax seeds, I started taking a calcium magnesium supplement 2-3 times per day. So that could also be helping. I can't say all my problems are gone, as I'm still figuring out which foods I'm sensitive to, but being able to empty my bowel has helped HUGELY!
Thanks again for the advice on the thyroid testing. I got my TSH and T4 tested, and the results were 3.09 and 14, respectively. But then I went and got my T3V and TSH tested again and they were 1.4 and 3.4, respectively. I don't know what's going on with my TSH, and, according to the information I have, T3V should be between 3.5 and 6.5. I'm trying to find a specialist, but it's a bit of a challenge to begin with, and then there's the fact that I live in Finland where I don't speak the language. This is making me really homesick. I'm feeling pretty bad these days. But one good thing is that ground flax seeds seem to be helping with the constipation. I just hope the flax seeds aren't screwing around with my estrogen levels, as I've read they can.
Thanks, Bea, for all those suggestions. I'll see if I can get some of those herbs from Helsinki. I'm working on limiting I eat beyond gluten-free. I have to admit, it's a bit hard for me, as I love food, and baking, and cooking. So far it seems that corn and rice flours are okay, but I'm not sure about potato. Actually, I do have a whole list going. As for fungus, yes, I probably have a candida overgrowth, but I'm waiting until I stop breast feeding before I go on a candida diet, as the carbs are pretty important for making milk, or so I've read. I do take probiotics every day. I'm looking forward to feeling better. I's been 6 months now that I've been gluten-free, but I only have a handful of days at a time before I get another reaction! Working on it!
By the way, did you also find it surprisingly easy to gain weight, I mean too much weight? For the amount of exercise I do, and how healthily I eat, I'm surprised at how heavy and out of shape I feel! This is another reason I suspect thyroid!
Thanks for the tip about the thyroid. I just have to find a doctor that will do as I say! :-). I live in Finland, so there's a language barrier in addition to general problems that most of us gastro-intestinal issue sufferers have. Hmmm, come to think of it, maybe I'll just go straight to the lab myself and pay for it myself. Just so that I can make sure to get the translation right, could you spell out for me what TSH stands for and FreeT3?
I've suspected my thyroid and one doctor sent me for tests. He was very insistent that that test was the one and only that I needed. One of my levels was within normal range but lower than average. I'm so tired (and a bit embarrassed) of going to so many different doctors, but if I can get this figured out, life would be so much easier: I'm a mother to a 2 year old who is not in daycare and still breast-feeding, doing a master's degree, and working part time in a country where I don't speak the language. Challenges abound!
I'm one of the celiac sufferers who experiences constipation instead of diarrhea. Although I've been following a strict gluten-free diet, I do accidentally get glutened once in a while, as I'm still figuring out what else I'm sensitive to.
A couple days ago, just after getting glutened the night before, I caught my son's stomach bug which for him (and my husband) entailed lots of diarrhea. I had some in the morning, but then it seemed all get stuck in my system, causing such bloatedness that I could not eat anything at all yesterday. I remained bloated all day, and still somewhat this morning, although I was able to eat two eggs with a red pepper and zuchinni without too much difficulty. But as today progresses, and after eating a salad, I am getting more and more bloated again, and I may not eat anything (or very little) for the rest of the day.
I should say at this point that of course as a celiac sufferer I am used to being bloated, almost all the time, and I'm sure this sounds like a familiar story to many. It's just that this is really extreme! I'm realizing that since I've been pretty constipated for months on end now, it's just getting worse, and I need to take action beyond altering my diet in order to get rid of the constipation. I've even started considering whether I have a blockage, or something even more serious. Today I took Laxoberon, which I'm sure has a different brand name in North America (I'm in Finland), but nothing has happened. Also, it seems like other regular remedies, such as drinking lots of water and exercising, don't seem to work either.
Hi all, thanks for the support. Dairy seems to be fine with me, luckily. I'll try to find some carob (though, it's not as easy to find here in Europe). I do still have hope that I will find something that works for me. It's just quite disturbing every time I get a reaction!
I've been gluten-free for the past 5 months, with accidents seeming to happen more frequently than I'd like. It seems that I get symptoms every time I eat chocolate. This discovery is very sad for me because I love chocolate. I've tried so so many different kinds, from many countries. Even those specifically labeled gluten free give me trouble. Is it possible to simply develop a chocolate allergy all of a sudden? Or is it a leaky gut issue? Will I ever be able to eat chocolate again? Please tell me yes!
I think I do, but it's a fine balance. I really enjoy the extra boost that I get from caffein and coffee in particular. I notice that I get testy in the morning after I drink coffee in the morning sometimes and that's when I cut back to about half of what I normally have. I normally have one or two shots of espresso in hot milk. One shot of expresso is equivalent to the caffein in one cup of black tea, approximately--a lot of people don't know that espresso have far less caffein than drip coffee. When I drink more than a cup of drip coffee, my eyes twitch! I've only been gluten free for about 3 months and I have not noticed a difference in how coffee makes me feel. I love freshly ground, organic, fair trade coffee. Yum!
Well, I can only state what I can from my own experience. I've been gluten free for only 3 months, but there are several things that could be the cause of the bouts of depression that I get... but that said, my depressed feelings do coincide exactly with when I first started noticing celiac symptoms in November of last year. I often wonder if the fact that I 'm a Canadian West-coaster living in the middle of Finland for two years is partly to blame for sadness. I'm quite homesick. Also, I have a 1 and a half year old boy, and I'm a bit socially isolated because of that.
But as for what I think might correlate with my celiac disease, I've noticed that when I accidentally get glutened (like yesterday), my eyes feel like crying. It's a weird way to put it, I know. Also, my heart feels heavy in my chest, and my head fills with clouds. I feel apathetic towards almost everything except the joy my son brings and finding more about celiac disease. But if there's one thing that helps me through rough times, and this might help your daughter, is getting plenty of exercise. A good boost of endorphins often replaces the lost energy. It doesn't make everything all better, and it requires a lot of will-power. I suggest running up a steep hill a couple times to get the heart pumping.
I think I've always had some trouble with quinoa, which is too bad because I love the taste. Luckily for me the only seems to be that I simply do not digest it. It comes out looking exactly the same as it went in! But thanks for the info about it; I thought I was the only one who had trouble with it!
I'm not going to reply to anything specific that you wrote because I think you're probably on the right track and that you will figure this out. I just wanted to say that from your looking into to this matter so thoroughly, it shows not only how much you care for your daughter (all of us parents care for and love their children!) but also your virtue of taking action when it is needed. Parenting teenagers is difficult, but you seem to be good at it! :-)