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
The hair test is a good one, so I've heard, I didn't have it. I had the ELISA 96 food panel done and it showed quite a bit. I've been able to add some of it back in slowly, but also had to avoid some things that were previously okay. The research shows that the reliability of these tests isn't very good and the only true way to know is an elimination diet. Eat only whole foods, such as fruits, vegetables, nuts, seeds and meats for a few weeks and then add one other food item at a time and keep track of your reactions. The things I've learned about intolerance tests are they are always changing. If you tested every month, you would get different results, depending on what you've eaten. I have a celiac friend who has been gluten free for over a year, retested and gluten showed up as okay, but only because there had been none in her system for so long. I'm not knocking the testing, I've had some done as well, but really the only true way is to test each food yourself and see what happens. Best of luck to you.
I've been receiving treatments and advice from a functional medicine doctor for just about a year now. I had never heard of them before I attended a 6 wk program on digestive issues, put on by my wife's county employer. Everything he said and his knowledge on the subject was remarkable so I made an appointment to see him. He is very picky on who he accepts, because he wants only the determined, so he doesn't waste his time, I liked that. Of course insurance doesn't cover anything that he has done so it became costly, but I figured being healed was worth any price I had to pay. I've had several tests, GI effects stool, Adrenal Stress Index & NutrEval etc and they all brought up "red flags" that he dealt with by giving me certain supplements. The problem has been that I'm not really much better and it is starting to feel like he is running out of answers. My program with him runs out in June and that will be it for me, win or lose, because of the high cost to maintain everything he has asked of me.
My question is, who do I try and find next? I know the GI doctors are useless with these problems. I've had 3 colonoscopies, upper and lower GI, small bowel etc and everything was negative. Even blood tests for celiac was negative, even though my recent tests with my functional medicine doctor all showed very elevated gluten intolerances.
Any advice, if June rolls around and I'm feeling the same? I keep praying that I'll have a breakthrough in the next 6 months but I just don't know??
I believe in using whatever works and sadly traditional medicine is falling way down the list for me. Doctors only seem interested in getting you in and out and with a prescription for something? Can you believe I've seen two different GI doctors in the past for long periods and neither one ever held any interest in what I eat or what might be causing the problem, just about taking something to mask over the symptoms. Sorry about the little rant.
I appreciate advice from everyone and there is nothing I wouldn't try. I've done acupuncture, hyponosis, meditations and various "miracle" drugs on the internet that end up being a "rip off". I went for a check up with my primary doctor a few months back and he had no clue what a "functional medicine" physician even was? I took him some of my lab test results and I had to show him how to read them and even then he dismissed them as unreliable, like they do for any non AMA test or supplement. We would be so much better if doctors cared about healing you instead of just making money and furthering the millions in the phamaseutical industry.
I agree, that the dairy has to go. There is also Almond milk, that is lactose free and tastes good. If you decide to try the glutamine, be careful, because it will cause nausea in some people. I've tried two different products containing it for healing and I couldn't stomach either one. Apparently this happens to more people than you would think. Best of luck to you.
I have tried in the past two weeks with ill results- broccoli, cauliflower, cucumbers, bell peppers.
I am totally grain free and have been for 5 days. Before that I was eating gluten free foods such as breads, cereal, granola bars etc. I've still had two "attacks" in the past 5 days, so no real difference in the change? My functional medicine doctor thought that I was having cross reactions so I was put on a whole foods diet only on the 11th.
I still believe there has to be something definitively wrong with me to not be getting any better. The handful of supplements I've been on should have offered some long term relief by their self. I've been on gut repairing, anti spasmodics, probiotics, digestive enzymes, magnesium citrate, vitamin D & a fiber???
Thanks, it is so frustrating. I am only slightly better in the past year than I was eating full out gluten products and even then I was avoiding greasy, processed, fast foods, chocolate, caffeine etc, due to my IBS-D symptoms. If my main problem was gluten, which I was told and tests showed, shouldn't I be feeling a lot better? I've been gluten-free for 10 months, I still get gut wretching cramps, pain, diah, constipation etc that comes on when it feels like it, with no provocation. Between what my intolerance panel says I can't eat and the food I just plain don't like, there is only a few things left. Trying to rotate this small circle to not eat the same things days in a row is an almost impossible battle. I'm down to only 2 meals a day and I'm always hungry. Sadly, I was happier being "unhealthy", I'm down 15 lbs since starting treatments and changed diets. I was only 157, so I didn't have any to lose? My biggest fear is that the over 3,000 dollars I have invested will prove to be futile
The GI doctors could care less, they just push worthless meds and worthless tests. Been there, done that for many years.
I can honestly say that I've never been tested positive for celiac disease, just IBS-D for over 20 years. However, when I began early last year receiving treatments and testing from a functional medicine provider, all signs pointed to celiac. I had some blood & stool tests done that tested off the charts for gluten intolerance. I was eating tons of gluten, all of the "good stuff", pizza, bread, cereal, cookies, pasta etc. I still ate better than most because I had avoided all processed, fast, greasy, spicy, chocolate and dairy foods for more than 10 yrs. I would get severe cramping pains and diahrrea, sometimes needing ER relief.
He believed I had celiac for a long time and it did consider damage to my intestinal lining, that just took a while to really affect me. Like a previous post stated, just because you have no symptoms currently, eventually when enough damage is done, you will and it will be bad. I'm having a terrible time still, due to cross reactions now to non gluten foods, I've been gluten free for 10 months with no cheating. We are still trying to heal my bad injured leaky gut. If you are diagnosed celiac and you continue to cheat or ignore it, trust me, you will pay later.
Thanks for the good insights and for offering advice.
I do have total faith in my functional medicine provider who is very knowledgable with digestive issues. He has literally healed hundreds of people, my case just isn't as "cut and dry" as most of his patients. All of my supplements have been advised by him and he is very picky on what he suggests. He only uses certain labs for the supplementation. All the ingredients are natural and fully allergen free. I am also taking Vitamin D, Magnesium Citrate and a GNC vegetable based gluten free multi vitamin.
I just started with the whole foods diet a few days a go after several extremely painful cramping sessions lasting hours. I was eating gluten free bread, Chex cereal, scrambled eggs and gluten free snacks like vanilla chip granola bars as well as fruits and veggies. I haven't had gluten foods since Feb 2012.
When I started treatments in May, I was initially on a ton of supplements. My testing originally showed parasites, overgrowth of yeast, overgrowth of bad bacteria etc. When I re tested again in July, I was rid of everything just mentioned and was feeling pretty good. I made it through July and August with no symptoms and then September I grew worse again and had terrible Oct and November. December, I had about 50% good days and so far this month I average 2 out of 7 days with no issues.
I've had two good days in a row, eating only the whole foods. I have been hungry and low on energy but pain free. My doctor wants me to stay this way until the gut heals properly and then I can try and add some different foods back in.
I took a food intolerance panel test a year a go that showed a lot of "red Flags" so I have to avoid them as well. My main goal is to just stay pain free, because I got crippling pain and couldn't function. I keep a record of everything and am always comparing and contrasting. Thanks again.
Hello everyone. I'm Dan, a 48 yr old gluten sufferer that has been gluten free for 10 months, but still struggles with leaky gut syndrome. I've been working with a functional medicine doctor for treatments, supplements etc, after years of getting nowhere with GI doctors. They are only interested in slapping the IBS tag on you and prescribing as much worthless harmful drugs as they can. Who knows how long I've been gluten intolerant, it took two trips to the ER with severe cramping and diahrrea to finally convince me that this was more than just IBS.
I'm still only having limited success because now it turns out that I am eating cross reactive foods that my body is mistaking for gluten. I've had to shorten my already slim list of things I can eat and it is frustrating. I've never been scoped for celiac, but I've had the GI effects stool test, the ELISA food panel & various blood tests, all which showed high intolerance to gluten, so I was told for the most part consider myself a celiac.
I don't trust the "gluten free" foods out there either. The FDA only has to meet certain markers to label food, so the ingredients are still there, just in a smaller amount. I'm currently on a whole foods only diet, eating nothing that has any ingredients in it at all. Fruits, vegetables, meats, nuts and that is it. No rice, soy, dairy, potato, egg, which worked for awhile as a gluten substitute, but no more.
I'm on different all natural supplements to aid in healing my leaky gut but it seems like one step forward and two steps back. I'm lucky to have 2 "good" days out of 7. I was a steady 155 in early 2012, I stay consistently at 140 now.
Anyone else as frustrated as I am with any advice?
The good ole insurance companies won't touch any tests that I've had done and I've sunk over 3,000 dollars in treatments, tests, supplements, consultations etc with a functional medicine doctor. My current treatment plan with him runs out in June and then I'm on my own because I can't afford to keep going.