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
Is there a "success story" part of this forum where people get better and write their stories and inspire others? If there isn't. I feel it would be very beneficial to the community. It would also be very inspirational and educational for thos who are struggling.
I feel like most people on here are people who are suffering. It would be great to have a community of those that are doing great return to help others still down in the dumps.
I try to eat just meat and veggies and unproccessed food, but sometimes I get cravings. Tonight blew up in my face though. I'd rather be craving foods than dreadin that I set myself weeks back in healing.
I guess I'll just have to try harder and keep to my guns about avoiding processed foods. I'll have to find some way to prepare foods for when I travel too. Isn't the gluten free lifestyle fun!
my wife does eat gluten, but not in our house. we just moved and made the pact to not cook anything with gluten in our pots and pans. i know i shouldn't eat out and, believe me I really try not to, but my wife loves to go out and i can't deny her that. we are in a new city and don't have any friend yet, so how fun is life if all we do is stay home at night?
i am sure the occasional eating out doesn't help, but hey. i do what i can. because I get hungry all the time (and really really bitchy and out of sorts when i miss a meal) that I am forced to eat at least a salad when we go out.
i actually ate something we cooked tonight and got sicker than i have been in months. i am still experimenting with grocery stores around here and the brands they offer. I am trying to figure out what got me so violently ill. The culprits are mrs leepers corn pasta that claims its gluten free, classico creamy alfredo sauce, or new york style company basil and garlic sausage (which I think may have been the culprit, but I ate it this morning and had no symptoms..). The rest was just vegetables. but man, after i ate...i got nauscious, bloaty, the big D, anxiety, a runny nose and even a few sneezes. My body was doing its best to reject whatever i ate. Even though it was minor, I have never had runny nose and sneezes with a gluten reaction.
I think I may download a nutrition app and keep on those vitamins. I haven't been taking them faithfully. That nattokinase looks interesting, but I will have to study it before adding something like that to my body. Its a relatively new find which always scares me. But it would be interesting. I wish I knew if there was scar tissue on my intestines or not.
I also forgot to mention that I did take supposed anti-candida probiotics when I was on the anti-candida diet. Its a product called "symbion" which I guess is similar to "three-lac". After buying the symbion, I realized I was a total victim of marketing, so I don't know if it was a good product or not. But I think it might have help me digest things a little better.
I've also never noticed white on my tongue, but I guess I dont' look at my tongue too much either. That vegetable reaction you have Yolo is odd, what the heck do you eat if you can't eat those veggies, grains, soy, dairy, gluten...whats left?
I have pretty much just been eating meat and produce for awhile now. I also only drink water for the most part.
I took out dairy for a few weeks, maybe even a month. I took out soy for a few weeks, but i feel like I don't even eat that many things with soy anyways. I also tried a candida diet for a few weeks.
After really messing with my diet the past 9 months, I have trained myself to pretty much only buy meat and veggies at the grocery store. I'll eat brown rice occasionally, but then I feel like my stomach feels slightly off...but then I think its in my head.
I used to get some cross contamination from pots at my mother's, but I moved and that isn't an issue. My wife love to go out to eat, thats really the only problem. but I usually get a salad with some sort of meat on it.
Aside from the obvoius gluten reaction. All i really learned is that when I over-do it with dairy or whey, that I feel a little worse. But I feel like I'm ok just eating small amounts of it. I think its just as simple as I am eating really healthy and I feel better when I'm eating healthy.
I've had my thyroid checked many times as well as my testosterone. I had low vitamin D at one point. I don't know how extensively the doc checked my vitamin levels. But I am taking an isotonic, high absorbtion vitamin and getting a lot of sun lately.
I was checked for diabetes and hypoglycemia. I had to take my blood sugar everyday and keep a food diary for awhile. But it all checked out.
I do have sleep apnea, but I got a cpap machine (a pressure mask you put on at night) for a few years now and it works great. Its odd because I am young and skinny and have sleep apnea. But I think its because I am somewhat tongue tied, the skin on my tongue connects where it shouldn't and I can't stick my toungue out very far. I think this makes my tongue go too far in the back of my throat when I sleep and bock the airway. The cpap is great for me though.
I don't really belive in vitamins or medications, haha. I feel like consistently putting lab chemicals in your body just can't be good for you. I just try to be diverse with my selection of veggies and meats and hope thats good enough for my body to heal itself. I mean, thats what was here on earth before we made processed foods.
Thank for your responses. I feel pretty good today. I just had a super low point when I wrote this post. I am getting better...sssslllooowwwlly.
I am starting to think that people that get better instantly either [A]-haven't head celiac triggered in their body for that long so they have minimal damage, -aren't celiac, but gluten intolerant so they get better immediately when gluten is out of their body or [C]-their symptoms are caused by antibodies attacking their body, not malabsorbtion...so removing gluten has quick results.
I think nearly all my symptoms are malabsorption related. If I think about my life... they slowly got worse and worse, and now they are slowly getting better that I've taken gluten out. It would be great if I got better and got really fat, haha. I never get fat no matter how much I eat. I would love to be somewhat plump and not shake and freak out when I miss meals. Of course people with weight always envy skinny people. The grass is always greener I guess. Anyways, thanks guys. I'll wait it out. I am slowly having improvements. I just wish I could instantly rid myself of this problem.
Within 48 hours of going gluten free I noticed I stopped having diaherea and indigestion/acid reflux.
After 3 months I realized my asthma was getting slightly better, that was an unexpected surprise.
After 7 months. I didn't have asthma anymore. I can actually run without and inhaler. I had a very enlarged heart and occasionally get an ultra sound from a cardiologist. He told me my heart was starting to reduce back to a normal size.
Now its been 9 months. Instead of sleeping 12 hours a night I am at about 9-10. I can go slightly longer periods without getting cranky if I happen to miss a meal. I think my memory is getting slightly better.
Its great stuff right? Well, here's my problem. My main reason for going gluten free is that I feel like I am in a brain fog 24 hours a day since I was 13 or so. I am age 32. I've spend more than half my life looking for a cure for this foggyness.
I can't even tell you how hard my life has been trying to explain this mystery illness and having doctors tell me i'm thinking too much. even my family isn't really supportive lately. as much as i try to live normally , this fog is always plaguing me. I've had so many diagnoses of mental illness and put on so many medications only to come to the conclusion that positive thinking, diet and exercise is the best remedy. If I am depressed, its just because I have this illness I can't communicate to anyone easily or seems to not be cured, but makes it really hard to percieve reality. And considering reality is the basic of which we all interact, that pretty important.
Has anyone else experienced something similar to this and had brain fog that taken years to heal after going gluten free? I really hope so. I feel so upset and frustrated and like i've burned all my bridges to my friends and family as far as talking about this. My poor wife has to hear my complain, and I really try to be positive when I can. I am just in a rut lately.
I also can't sleep properly. I feel half awake for most of the night even though I'm sleeping, or I have vivid dreams. And while I do have some increased energy. Trying not to come of as lame, but I feel so hopeless. I feel like maybe I don't even have celiac disease and its all in my head.
See, I was never officially diagnosed with celiac disease. my blood tests came back negative. i asked a gi doc for a biopsy but she told me that I have such an obvious reaction to gluten that I should continue my diet either way, so she wasn't going to do something that invasive.
I feel like I can't trust any doctor anymore. All of my true progress and diagnoses have come from my research, not really any doctor I've seen. and i am so sick of hearing about medications and surgeries that seem unnecessary. Its freaky.
I guess I just am asking someone to give me a story that can give me some hope. Thanks so much for any response.
Oh and about the thyroid issues. If it means putting me on medication or getting parts of me removed...I would rather be the way I am. I am done with taking a medication that I "have" to take all the time. I think I will stay this way now until I am forced to change.
But maybe I am jumping the gun. I might not even have any thyroid issues. I could get tests done, like I said...I think they tested me for thyroid stuff but I dont' really know. I am going to make a doctor appointment sometime soon before I don't have insurance when I move. I'll mention it to him. I just really am skeptical about treatments if they are for the rest of your life.
I was on many, many prescribed pschocactive medications that I feel really messed me up for a long time between ages 13 and 29 or so (im 31 now). For instance...My opinion on SSRI's, the most common treatment for depression...is that they dont' work. All they do is change your brain in "some" way...but not really to make you happy. The few people that this "change" helps, feel a bit better and thats the 33% effectiveness in a trial vs. the 24% on the placebo. And they are SO PHYSICALLY ADDICTIVE! Doctors don't tell you that. I had to try for 1.5 years to get off SSRIs. Anyways...long story and many more opinions later...I have much up experience up my sleeve to not trust anything a doctor gives me. I trust most of their intentions...but I trust nature and hardwork much more than the modern school of medicine.
side tracked. haha. anyways. I will get my thyroid checked. Thanks for the input.
I am going to try to deal with cross contamination. It seems to me thats probably the primary cause of still being so tired. I had no idea it would affect me that much. But for instance I made fried potatoes today on a cast iron grill and got so so sick afterwords and horrible brainfog for hours. Now that I am aware of what the cause is. I am starting to realize what (i think) is happening. I started using aluminum foil when cooking on the gas grill now because I got sick off that once not too long ago.
And I actually don't live with my parents right now. I live with my wife. The reason I eat so much with my family is: I work at a family business and have just become used to going to my mothers for lunch and dinner. I don't really make enough money to buy groceries all the time. Breakfast is hard too...I always wake up like 5 minutes before work cause I am so tired, so I don't eat breakfast at my house. I end up eating it on my break at my mom's. Tomorrow, I am just going to try to devote all my free energy to buying and making my own food. I guess.
I think despite me moving, I am going to get a few of my separate cooking items. I am going to bite-the-bullet and shell out a good deal of money on groceries and just become self-dependant for food at work for these last few weeks I have before moving.
Its just so hard to do because I am so tired. Getting the energy to go to the store after work, when I barely make it through the work day... then making the food for dinner and the next day's lunch... and I am not the best cook yet. I've been realizing that simple cooking isn't too hard, but I am limited in what I can make.
This is totally a topic for another post. But read this judgement free please. I quit smoking for a year, but started again not too long ago. I tried quitting again, but the stress from it actually popped something in my neck and it was really painful. Anyways I decided not to quit for the time being. I was reading that most cigarettes have gluten in papers and the glue even if they are additive free. So I was going to buy American Spirit tobacco (which I know is additive free) and a pipe...so I wouldn't have to smoke the paper. I do plan on quitting again, but I feel like right now isn't the time. I have way too much going on in my life.
So the last thing I could eliminate would be stuff like toilet papers, floss, tooth paste, soaps. But that is just way too much for me right now. I read the labels, but its just usually a bunch of chemicals and I get overwhelmed. This post is way too long, so I am going to stop writing, haha.
I have had my thyroid tested. They've checked blood sugar and deficiencies as well. That was probably the first thing they tested me for about 20 years ago. I've had it tested recently as well.
I have low vit D...or I did a few months ago. I have been in the sun so much now that it is summer...I doubt I do. But that is also a symptom of celiac i've been hearing.
I am so sick of doctors testing me. Thats why I said this is my last hope. I feel like if I don't have celiac disease, I am just done with trying to figure this out for awhile. I'll just deal with the cards I've been given. I can't stand medical doctors.
I do think cross contamination plays a role. I am moving about 3000 miles away soon and selling all my stuff, so I can't buy new cook-ware. But I just realized the other day that I use my mother's wooden cutton board and cast iron grill. I was trying to cook eggs yesterday with alumuminum foil on the skillet, that was hard haha.
My mother also cooks me stuff sometimes and gets so mad when I ask her whats in it and to give me an ingredient break down. Even if it is Gluten free, she uses all her pots and pans that cook other gluten meals.
The cross-contamination via pots and cutting boards idea hit me about 3 days ago. So I'm still trying to figure a solution for that until I move.
I also stopped eating casein about 4-5 days ago because I feel so desperate, I just wanted to try something new. I didn't really have any withdrawal from casein. I read so many horror stories about withdrawal. Its hard to find nourishment without milk, cottage cheese and yogurt. It can be done, but its rough for me. I think I'm probably going to go back on dairy in about 6 days if I don't notice any change because I don't want to get skinnier than I am.
For now my focus is eliminating cross contamination from surfaces and sticking with it. I can't wait to not be tired all the time
My problem with the human race is so very few of us are open minded. Americans (if you are born and raise in the US like me) especially seem to be intolerant. I am from the US, so maybe I am biast...but I am not impressed with most people I know here.
Its seems like most Americans have "Its my way or the highway type attitude". Like they even call themselves American as if thats all of America. America has 2 continents, North and South...it also has many countries in each one. So to assume when you should be internationally known as AMERICAN, when its only a portion of AMERICA and apparently nothing else matters but the US...its rather narrowminded and not accomadating of others. And even worse, the entire country catches on to this and it becomes the standard. All because someone couldn't think of a creative label that was more catchy than "United States-ian".
Anyways, I am saying this as a metaphor for your obviously intolerant experience. Even the woman who walked away when you were talking about gluten. Like why didn't she just say "Oh, I am sorry. I dont know what that is?" God forbid if someone were to admit they don't know something. People are so afraid to come off like they don't know anything.
The reality of my life is, I have my family who loves me, animals, and about 3 true friends. But whats awesome, is that is all I need. I am open to other people, but I usually expect others to not take the time to understand me, even after i try to understand them.
The real truth is we are all struggling to figure out why we are here. Life is hard. All that matters is your positive attitude. Focus on good things. I bet if you look at that party, not everything was bad. Best of all from what I see...Its really awesome you know whats wrong with you now and that you can fix it.
I have been attempting a gluten free diet for a little over 5 months now. I (think) my energy levels are higher. And within a few days, I could tell i wasn't having loos stools anymore. But today, for instance, I am so tired I can't even perform at work. I had to go home to sleep. I feel like a failure in life, I am so sick of being tired for everything I do. I am so sick of being the hypochondriac tired guy. I was wondering if peraps I accidentally glutened myself, but I keep looking back on waht I ate and I dont know (i had eggs on someone else's cast iron grill maybe?) Its so hard to tell. My real question for this post is this though:
"How long do people take to get energy back? Can it take 6 months to get only a small bit of obvious difference?"
What makes this time harder for me, is I am not officially diagnosed Celiac. Its hard to get my wife and family to stand by me with no results and barely any proof. 5 Months ago my blood tests actually came out negative for Celiac. I was on the diet for 2 weeks before the blood test, which I now know is a bad thing. But I have a very obvious reaction when I eat gluten and very classic symptoms...so my doctor just told me to stick with the diet. I have no idea why he didn't order an intestinal biopsy now that I know what I know. I even switched doctors for this, but I just don't trust 80% of the medical community after my lifetime experiences. Anyways, without the "official" diagnoses I am so afraid I am putting all this hope into getting better and then being crushed by barking up the wrong tree. This was like my last hope. I have a large childhood story of wasting time on doctors only to give me BS diagnoses like Chronic Fatigue Syndrome and Irritible Bowel Syndrome or depression/anxiety. I know I am not depressed (i was) and I get anxious sometimes, but I have taken numerous drug free steps to deal with it. Everything just feels so dark and unreal to me, but malabsorbtion just sees like a better fit, especially cuz I am so skinny. I am 32 with the body of a 16 year old.
If someone reads this who had felt better with the diet or knows people...let me know if 5 months and no obvious results is normal? I feel a little better, but maybe its just cuz i am eating way healthier and cooking for myself.
Also at the start of my post I say "attempt" the diet because you mess up alot in the beginning and learn where gluten is hidden on labels like "malt flavoring" has barley, and cross contamination on cooking surfaces. I have been trying so hard to avoid gluten, but then I get sick and research like crazy what it could be and find out something else I have to avoid. So its 5 months with a few occassional poisonings. But I assume that is normal...there is no way people can start this diet without messing up. Thats why I get so jealous of people that say they feel better in 3 months. Anyways, please let me know if this is normal. I am really upset right now. I feel like I have put so much effort ino this and I am going nowhere. Thanks.