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 know Celiac disease is an "auto-immune" disease, but why? What's up with that? Does that mean I can have a hard time with infections or getting over colds too? I don't know what the auto-immune dangers are.
Yeah! Hurray for buckwheat! Right now, it's the only grain product I am always safe with. The buckwheat cereal you mentioned is a staple of mine when I need a good carb fix! Also, I've been able to bake with buckwheat flour. ( The cheapest way to get it is the 100% buckwheat pancake flour..not the "mix") I use buckwheat flour in place of wheat flour to make breads like banana or zuccini bread ( substitute any veggie or fruit mash desired) and I use mechanically press palm oil as the shortning ( it's about the consistancy of cold cream and works great.) The yeast breads with buckwheat were a no go, though, because the flour is too heavy to rise. The banana bread thing is heaven, though, and SO easy and fast. Use carrot or squash or anything you're sure about for you.
I also make little buckwheat cakes ( thick) to use in place of buns and they have a great nutty taste. A little baking soda and powder must be added, but you can experiment with quantity there. I still am, but have had no real bad results with any estimations yet. For about 8 little buckwheat cakes/buns ( 2 c. flour) I use about a half teaspoon of soda and the same with the powder. That's working well right now.
I've been gluten free for three months after my biopsy diagnosis, but still can't touch milk, soy or corn products. Any of them. I read that casien may be the culprit with me. Geeze! How bad can this get, anyway? I thought celiac was bad enough. Anyone know about the casien thing??? Help!!!
I'm in the in the initial healing process, and I know it's supposed to be hard. Been diagnosed by endoscopy biopsy. Eating non- gluten of course, bit still have WAY too much trouble reacting to many non-gluten foods. Such as fruit or anything sour...any starchy veggies...milk products. And can I please ever make a non-gluten baked good that I don't react to??? Seems like anything too complicated or diverse sets me off even if the individual ingrediants usualy don't. What up with all this?? I'm so confused!!!
I'm on fish and vegetables and buckwheat only right now. I can't even do rice ar any grains at all. No starches. No fruit. Almost no fats ( common dietician says) Lactose intolerant, of course. Absolutely no strong flavors of any kind. But then I'm just beginning the healing process and am grateful just to out of the IV clinic finally!
I really wish I could find a good web site that doesn't just say don't eat wheat, barley, or rye. Geeze! Wish it were that simple! And what are these "night shades"? I'm so limilted right now and keep making mistakes like when I tried eggs. Bad 4 me! Potatoes, beans...I never know what to do, so I'm just sticking with what I know right now. Fish and non starchy veggies and buckwheat. Starving here!!! AAUUGGHH!!!
The first couple of healing months for me have been absolutely awful! I of course react to gluten, but aslo to so many foods that are non gluten. Trouble with fats ( dietician ays that's common) lactose intolerant. The only grain I can tolerate at all is buckwheat ( not really a grain but a flower) Natural and artificial flavorings absolutely throw me down! No fruits yet or anything sour ( like a dry wine too) I worry aout my fat soluable vitamins because I'm getting very little fat and my energy level id low cause I can't take any startchy or sweet carbs like beans or rice or fruit. Even potatoes are still off limits.
I like to say I get my variety having fish and vegetables one day and then vegetables and fish the next. lol Yeah this is a tough time for me, but yesterday I was able to tolerate 8 oz of fat free milk! Yay! And even though I can't tolerate chicken, I discovered I can have pork ( of all things) if it's boiled clean of too much fat and in small amounts. I can also drink tea again too! Nothing flavored, though.
So I'm getting better and smarter and more patient. Patient especially has been a biggie with me. Not trying to eat all foods that are non-gluten too fast. Wierd that we have all these other food reactions at the beginning of the damage manifesting itself. I was SOOO discouraged and always sick for a while. But at the very beginning I was actually doing the IV food bag clinic cause I couldn't tolerate a bite of anything. Hideous! Thank God that part is over at least!
Oh sure! That's a celiac thing. I get dizzyness, loss of balance, ringing in the ears, extreme irritability, disorentation,numbness and neuropathry in the extremities, and bone and joint pain all accompanied by extreme sleepiness and exhaustion. But you can't lay down cause it makes it worse. AAAUUGGHH!!!
My reations always get better in sequence. First I feel better mentally ( less sort of creeped out feeling or basic anxiety) then I know the dizzyness and and balance problem goes. Numbness next, but the joint pain lasts longer. Usually 24 hours or so, but the disorentation ( I call it the Jessica Simpson complex) and ringing in the head can go on for days with any food at all stirring things up and I have to be really careful eating too much at a time.
I'm losing too much weight and worry about being malnourished. I take good vitamins and calcium too because after a bad reaction I have to eat nearly nothing for a few days so as not to "stir things up again" I've been told that when this kind of thing happens some Celiacs take laxative to clear out whatever caused the darned crap in the first place cause it can take a few days to natually void it out. I haven't tried that yet. It seems so drastic! But I almost did that this weekend. My reaction ruined my weekend totally. I'm going to ask my doc about the laxative thing to make sure it's OK occasionally before I do that.
My IGA tests were inconclusive so my gasroenterologist told me to eat gluten foods for a week before blood testing again because being gluten free for even a couple of weeks will make the antibody test negative.
I made it four days and I was DONE with that!! The IGA test came out negative so he decided to schedule the endoscopy biopsy. There is absolutely NO NEED to eat gluten for a time before this test!!! Damage to the villi ( what the test looks for ) takes years my doc said and no matter what I did food wise before the test would not effect the results at all.
I stayed gluten free then ( geeze! Of course! ) for the few weeks before the test and it showed villi damage. Celiac. The test was a breeze, though. I was unconscious for the whole thing, and they gave me a colonostopy while they were at it to check for possible bad things down there which can be cause by Celiac Disease. Happy to say that came out fine.
I had no "recovery" time. I couldn't tell anything had even been done, so don't worry about that.
If your tissue examination ( biopsy) shows villi damage don't be alarmed. You kinda should already expect that may be the case. Your doc just wants to verify the Celiac diagnosis. They just do.
If you do show damage and are in the "healing" process, don't be shocked to experience confusing reactions to non gluten things sometimes for no apparent reason, a lot of frustration figuring out how to stop your unexpected reations. No one will be able to advise you either. All they can say is that Celiac is "different with everyone" and the healing process is impossibly hard to deal with cause weird things will happen continually.
Even though @%$& happens constantly, though, and the time span for this is unknown for sure ( everyone is different again) if you are gluten free you will still be healing even when weird unexpected reations still go on for a while for no apparent reason even gluten free. Your intestines are screwed up for the next two months to a year. Geeze, can they please give us a more narrow clue???? AAUUGGHH!!! Basically we're on our own and good luck in hell. That's basically it. Rest assued it will improve bit by bit with nose dives all the way..but fewer and fewer with time.
My advise is to just grit and bear it. What else can we do really? What a pain! Look toward the future, though. Keep reminding yourself that once you get through this initial bad part you will discover a lot of health issues you may have had for years will go away from joint pain to gingivitus. Really, I'm not kidding. Things will get tons better so hang in there, and God bless us all.
I had two IGA tests that came out normal, but then my endoscopy biopsy tissue test for villi damage showed quite a bit of "stubbing" and confirmed Celiac. My gastroenterologist ( which I chose for his expertise on this) said that there is such a thing as non- antibody Celiacs. That's why my reaction symptoms are mostly neurological instead of the stomach ache, nausia, vomiting, headache that results from antibody producton..as though one suddenly has a bad flu. Joint pain, disorientation, loss of balance, and ringing in the head are my main pains in the butt.
But I still have the same problem as you..I seem to be actually getting worse during this healing process sometimes. I'm able to eat fewer and fewer things every day. Was fine with rice, olive oil, fish and dairy before. Now, no go. But my reactions aren't as serious. That's the only improvement.
My dietician told me that every Celiac has their "nemisis foods" that they will react to that are gluten free, and that these will change around continually during the initial "healing process" and to expect a lot of confusion, frustration, and unexpected reactions. Sometimes just because of a stressful day, you can get reactions out of thin air without even eating. basically expect a lot of "hell" for a while and more weight loss till things eventually start to turn around. When this will happen is anyones guess. That's most of the frustration..not knowing anything for sure or what to expect for sure at first. You don't have anyone to go to..anyone to advise you on what you are doing right or wrong. It's all so confusing and we are really actually on our own. Bummer, huh? Good luck to us all!
I've just stared my healing process, so I still get reactions lots of times unexpectedly for various reasons. The first thing I'll always get when I start a reaction is a buzz or hiss in the head. If it's a bad reaction this hiss can be very loud! Does anyone else get this? Also it's the last thing to go away..lasting often into the second day ( a bit less then) and sometimes even slightly into the third day. It's so annoying! I really feel sorry for people that have tinitus all the time!
I was just diagnosed a month ago and have been gluten free of course, but there were still tons of other things I reacted to cause I still needed to heal, I guess. Trouble is, even though I've been gluten free for a month now, a lot of the things I could tolerate a month ago I react to now.....dairy, olive oil, rice, fruit...stuff I could eat before. Now I'm just on a steamed veggie diet and only small amounts at a time. I'm wasting away and just don't understand why this is happening. Aren't I supposed to be getting better??? What's up?
I was just finally diagnosed with celiac after my endoscopy biopsy. I was actually relieved to be finally verified as to what I already knew was wrong with me after about a hundred hours on the net and scientifically done food experiments on myself. ( seems you practically have to diagnose this disease yourself sometimes.) Finally ended up at a gastroenterologists office who believed me and did an endoscopy biopsy at MY request. Sure enough...Celiac.
As far as neurological symptoms..that's what started this whole journey in the first place. It started out with foot neuropathy ( first I was screened for diabetes...no diabetes) Then I started getting the VERY sleepy and weak effect. When I actually collapsed once after a meal, I really started to research this.
My internist gave me the IGA test which was negative..but I was still convinced it was the gluten. After eating I began to have a lot of pain in my bones and joints, dizziness, an overall "ill" feeling, horribly loud hissing in my head, bad foot neuropathy, extreme sensitivity to sound, and worst of all..extreme emotional response which could either be sobbing, anxiety, or anger to the point of rage. ( so very wierd! ) This would only happen after eating.
I eliminated gluten and went totally veggies only and was totally reaction free for a couple of weeks and felt great! Then I started reacting to even a bite of a vegetable that I was fine with the day before. Things got really confusing then. I barely ate for weeks and ended up in the ER on a food bag! What I didn't know was how difficult the "healing" process was. A nurse at the ER told me that for some it can be so bad that they have to eat as little as possible and come in every few days to the IV clinic for the food bag treatment until they were healed up enough to eat even gluten free. WOW! I prayed this wouldn't be me!
Thank God after a time the reactions to every single thing subsided and I am now able to get enough calories, etc. to survive on while I heal up. At this time I can eat only fresh veggies (except for potatoes or tomatoes) and I can also tolerate olive oil, long grain brown rice, and fish. No soy products, fruit, lactose, corn products, no anything else at all yet. But my dietician says that as time passes I'll be able to add things in. Many Celiacs, however have trouble with some non-gluten foods all their lives. Corn, tomatoes, beans, and eggs are common. One woman I met can eat anything gluten free except for watermelon. Strange, huh? Another women I met who owns a gluten free strore ( bless her!) cannot eat eggs. She says that all Celiacs have one or more non-gluten foods that will still give them the glutened reaction. Go figure.
So, here I go on my healing adventure. Right now I am just over joyed to have been able to add rice to my "good" foods. Before that I was DYING for carbs!!! Now I feel much better and have stopped losing so much weight and have more energy. Whew! Now if I can only add eggs back in! Patience plays a big roll, though. If I want to "test-add" a new food ( like potatoes again, please!) it has to be just a tiny tiny bite or else I can be really sorry.
So wish me luck. I heard that during the healing process you can be going along fine in your regimine and all of a sudden you nose dive for no apparent reason, and everything gets so confused again. Here's to hoping that won't happen to me!!!!