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
not me- and just the name glutinous rice starch is enough to scare me off right now hha. I wonder why pyrotechnics was coming up thats odd isnt it.Looking for all those exotic ingredients is what got me in trouble! Oh yea be careful also if you get korean red pepper in paste form( which many times thats the way thier red pepper comes IF you can even find it called gochugaru or something like that) cause many times its gluten filled. I just used regular red pepper even though they all say to use Korean, I dont know even know where Korean red pepper is and if its really all that different.That recipe is good though, theres lots on the web so Ive been trying a few different ways but if none works as good as that one did for my stomache Im just gonna stick with that.Oh yea, I also discovered I have a BIG fake sweetener and dye intolerance, cant handle even trace amounts.. didnt you say you have that too?
Belle-Well that makes sense.How sweet for your boyfriend to do that and its like we def dont wanna discourage them from cooking for us but boy is it a minefield out there!The bag had only rice in the ingredients but like you said Im 100 percent sure it was either cross-contaminated with wheat OR like you said the label wasnt right. I also read that sometimes there can be an English problem as well and they can easily mix labels up also. It was funny when I went in the store I stupidly thought I could ask the girl in there to make sure thier was no wheat in it, well she was really trying to help me but she couldnt speak English and when I kept saying "no wheat, only rice", she thought I was saying " you have no wheat only rice?" and then took me to the wheat flour hha.Then my mom was in the background saying GLUTEN.. U KNOW, NO GLUTEN?? I said mom please, dont complicate this more than it has to be.Needless to say for a celiac unless one of us speaks the language, not the brightest idea!
Hey notme, yea things have been going alot better for me lately other than this last episode and one of the things that has helped me the most has been the kimchi. Thats why I was sooo mad I had to throw the last batch out! Anyways, Ive done the first recipe which I liked and was totally allergen free but it probably isnt as tasty as this second ones gonna be especially when I finally get to use rice powder with it. I will say the first one is what helped me like medicine but who knows I have yet to try the second recipe so it might as well. If you make the allergen free one Id use just regular organic cane sugar instead of honey( it only has about four teaspoons) because Ive heard honey can interfere with the fermentation process, although she even said that the small amount of honey wouldnt hurt it.
Now the second recipe is the authentic one Im gonna make tomorrow but Im gonna leave the rice powder out of it since Im trying something called the autoimmune diet and rice is prohibited for now (and also I guess my last glutening put a bad taste in my mouth-no pun intended hha). I think it would be great though with the Bobs Red Mill rice flour.Its not hard but a bit involved to make and I found its really best if its left to ferment about four days. You can choose which one you l wanna try. Hope you like it.... now on my third batch, hope this one goes better than the last! (-:
Im in the same EXACT boat. Matter of fact Ive been on an elimination diet meaning Ive been eating totally natural, nothing processed at about the same amount of calories per day as you and Ive gained about 30 pounds after finding out Im gluten imtolerant/ Celiac.My naturopath who also used to be a neurosurgeon said that for some people they cant lose weight while still having digestive problems and apparently can gain as well.
I read somewhere that everytime an offending food is eaten (which can be alot more than just gluten for some people) a person can gain between 3-5 pounds.If its only been two months for you your gut most likely has not healed yet.Leaky gut issues can cause weight gain due to the inflammatory process which as we know is very tied to Celiacs.Maybe google leaky gut and weight gain, not saying it is but that could be your problem also.
Your diet looks pretty good and your macros seem dead on so I know thats whats so frustrating but I would cut out the dairy as well as the same villi thats used to digest gluten is also used to digest dairy.In the past when Ive had problems with not being able to lose and I cut out dairy that was all it took. As for me now however, it seems nothing is helping as I keep reacting to not only gluten but other hidden things also.I found I had lots of intolerances to things like fake sweeteners and dyes and anything packaged at all and I mean anything, even like protein blends and almond milk.
I hope I can get a handle on it as before this all started I was 147 and Im now at a whopping 175! Its a freaking nightmare and pisses me off too when like you I know my diet and exersice is spot on. Let me know if you find something thats works for you. I think you have a good chance of being able to lose if you keep things about where they are at but just omit the dairy although like I said if not for Celiacs your diet looks good to me,your macros are right in line with what the majority of bodybuilders do over at BB.com hha. I know its tough though, trust me im with you on that, it stinks to be in the group that gains intsead of loses but then again I know they have another set of problems thats terrible as well.
Actually my last batch of kimchi was amazing for my gastro symptoms. Anytime I ate something that didnt sit well with me I would eat some kimchi and the pain would go right away.The last batch was a much more simple recipe however, and had no rice flour.Im debating on just going back to that since Ive been having so many problems. I really wanted to make it the authentic way so I guess I still could use Bobs RM too. Thank goodness for that product line as its usually easy to find and has never caused me problems either.Thanks, Im gonna give that a try I think and stick to just that.I see that its still possible to get glutoned by supposedly gluten free packaged anything!
Ive been on an elimination diet for the past two weeks and have been doing really well but recently made a new batch of kimchi( fermented cabbage- a korean recipe). Well this new recipe called for a couple tablespoons of rice flour.My first mistake was going to an asian market to purchase this as it was harder to make out whether it was gluten free or not, but from what I can tell and have googled it looks like it should be gluten free.The ingredients said it was refined from 100 percent rice.The thing is immediately after eating it I reacted pretty severely and being on an elimination diet makes it easier to pinpoint what it was. This is the only thing it could have been that was even remotely processed.Ive looked it up and I know theres still a small chance of cross contmamination in rice powder although that still seems low, but I cant tell even exactly where it came from either Vietnam or Los Angeles so who knows where its been and what process its been through.Im learning and wont make this mistake again! Anyways, has anyone else had this problem or used Bobs Red Mill rice powder with success?Thanks!
I hate it when I cant figure out the source of gluten and my mom and boyfriend ( who usually do alot of the cooking) are there with there arms crossed saying "well dont look at me, I dont know where you would have gotten it, it was all gluten free" hhe.And sometimes they might just be right because Im starting to realize Im getting gluten like symptoms from more than just gluten like dyes and fake sweeteners. Im also pretty certain that Ive been glutoned more than once from supposed gluten free packaged foods, I dont know how exactly but packaged anything just usually doesnt agree with me.One major thing Ive noticed and that Ive heard others say is that a straight glutening will last for days, for me its about 3-4 days but another reaction to fake dyes sweeteners or food that just doesnt agree with me for whatever reason will only last about a day.Usually I can tell a little more by how long it lasts but yea Id def be careful with packaged anything. Hope you feel better soon!
Sorry to hear your not feeling so well as I can def relate. About two months ago I had been taking nsaids for a while not knowing how bad they were for the stomache lining and I think it damaged my gut lining so bad I couldnt hardly eat anything for two weeks.It was either that or I was getting glutoned or reacting to something over and over again by an unknown source. Well, out of desperation I tried the closely related version of the SCD diet which is the GAPS diet.I believe that the SCD diet was taken from the GAPS diet. I will say that it did seem to calm my gut down quite a bit and the soup made with broth and bones was really soothing.They also talk about eating fermented foods so I made some homemade kimchi and started drinking kefir as well.The kimchi has been amazing. Everytime I get a flare or acid feeling in my stomache I eat some kimchi and the pain goes away shortly afterwards. Its supposed to be really good for digestion and said to have trillions of probiotics.
Anyways, yea I could see it working IF you could stay on it. It was soooo restrictive and like Irish heart said it got to the point where I was like, just give me some kind of grains already!I also dont like how the SCD page has "why celiacs slowly dying" on it. It just didnt sit well with me and then how you have to order the info seemed a bit disingenuous. Im not saying the diet wont work though cause it did seem to help me for a while at least.I havnt tried FODMAPS yet. Is it as restrictive as SCD or GAPS?
It sounds like you are just as sensitive as I am.Diet sodas crank me up at first and then make me feel really irritable.I really should know better and although it is rare that I do I should never put those things into my body because I have been sensitive all my life. I guess I will do good for a while and then give in and think oh it wont hurt this one time to have a diet soda and it is effecting my health more than I am realizing.I also avoid soy but my chiro told me for some reason soy lecithin wasnt as bad, but I believe he wasnt talking about in the case of celiac/gluten sensitivity. I think he just meant it wasnt as bad for blocking the thyroid or something but now that you mention it one can never be too safe even if it does it a little bit. I will start paying close attention to soy lecithin as well because my chocolate bar did have soy lecithin in it.
I have also always struggled with anxiety anyways and like I said I do believe that the fake sweeteners might be doing the same with me. Basically I think I have formed an aversion to ALL things fake hhe and like you said sometimes when I think Ive got glutoned it turns out that it doesnt last nearly as long as it usually does. I think these are the times when its from the artificial chemicals instead of a real glutoning. Hearing so many others say they experience the same thing gives me more willpower to stick to it and that its not in my head. I am going to be much careful from here on out as Im ready to feel better once and for all.
I agree that esp for us its better to have the real sugar than the fake. Thats something Im just now wrapping my head around...although sugar might not be not great in excess its waaay better than the chemical sugar.Again,thanks so much for all the help!
I know, your sooo right. I usually dont slip up and drink something with that many chemicals but all in all I think it has given me a clue as to what may have been ailing me lately. I think its the red also.A couple of weeks ago when I thought I got glutoned I took some childrens liquid benedryl in hopes of slowing the reaction and well I noticed it seemed like it made me much worse, almost like Id been poisoned or something. Ive also from time to time been using a dash of those liquid mios that although are gluten free also has red dye in it. On top of that Ive been chewing gluten free trident gum that also has yet again RED DYE. The thing is that all these also have fake sweeteners so I could also be reacting to that as well but my bet is also on the red dye. Looks like I need to really stick to ALL natural. I just find is so hard to believe that I reacted to that just like gluten but looks like I am.
Oh yea, I did call hersheys and asked about the dark chocolate bar so although it wasnt listed on the gluten free list thankfully it was gluten free.. wheeew Im sure we all didnt want to lose that one!(-; Yea I need to wait till my body heals first before jumping conclusions as Im just starting to realize how much more cautious I must be. Thanks everyone, by any chance do any of you react to fake sweeteners badly as well?
I have been feeling a bit dehydrated (although I drink quite a bit of water)so I decided to get a bottle of kroger brand generic pedialyte.I paused considering the named brand because I knew it was gluten free but looked at the ingredients and they all looked almost exactly the same, key word was almost I guess. Well minutes after drinking it I got the old familar ache beginning in my stomache and shrugged it off hoping against hope it wasnt what I thought it was. Over the next hour it grew into one of the most violent reactions Ive ever had.I ended up throwing up it was so bad and am sicker than I have been in a while today with all the familiar glutening symptoms.
I called the company just to reafirm and while she said it doesnt explicitely state gluten free it had absoluetly no allergens listed and she said it must be gluten free.Well then what did I react to? I know dextrose can come from corn or wheat but have read that it is refined so much that there is none left. The only other thing I ate with it was hersheys dark chocolate and Ive never had that happen with dark chocolate before. I am 99.9 certain it was something in the generic pedialyte. I have been having a hard time lately even with being 100 percent gluten free so it may have something else in it I suppose that Im reacting to. I need to find out what it was because it might give me a clue as to whats been going on with me as far as new sensitivities. However, I find it SO hard to believe that it wasnt some sort of wheat glutening cause as far as reactions go it was by far one of the very worst I have ever had.
Here is a list of ingredients in the generic Kroger brand. Can someone please help me figure out what I could possibly have reacted to, this is hell not knowing and then being told it had no allergens listed was shocking!Thanks all, any clues will be appreciated as I think I also do have leaky gut....
Water, Dextrose,Citric Acid,Pottassium Citrate,Sodium Chloride,Sodium Citrate, Acesulfame Potassium, Artificial Grape Flavor,Zinc Gluconate,Sucralose,FD&C Red #40,FD&C Blue #1
Ooooh yea I almost forgot, as one of you brought up thyroid is another thing I have suspected. I had a TSH test a year or so ago as well but according to my studies on "stop the thyroid madness.com" THATS not accurate either as something called reverse T3 and reverse T4 is what should be tested instead.Im too chicken to tell a doc what test I want, I feel like Im trying to tell them how to do thier job or something so I think Ill need to order the tests myself just to put my mind at ease but yea Ive got alot of thyroid symptoms as well. Im in the cant lose weight for nuttin group, low temperature,thinning eyebrows etc you know the deal, but yea its somthin I should def look into so thanks for reminding me there.
And btw Nvs- its probably most def the gum that is making her teeth yellow, esp if its the 4 mg but any will do that because of course it contains nicotine. When I quit smoking a couple years back using the gum I went out with friends and was chewing like a maniac to avoid smoking and we had a few pictures taken. I was horrified when I saw the pics on facebook as my teeth looked the color of an ear of corn,so I can imagine what it would do after chewing for that many years!(-;
Yea I agree with both you guys. I need to reevaluate everything again. I have been extremely careful with my food but now I am starting to think it could be cross reactivity or maybe even CC . At first I thought the idea sounded a bit crazy that I could be picking it up from household utensils that have had gluten on them as did my family but Im really starting to rethink things.As far as my diet there for a while I cut it ALL out because im almost for certain I have leaky gut. I wasnt eating gluten soy,dairy, eggs, nuts or grains of any sort .. even no nightshades but then it just got all too much for me as I got sick of not being able to eat anything. Recently Ive been thinking I might need to go back on it again because that might be why I could be reacting to it seems everything when Im pretty certain Im not eating gluten.I walk around feeling almost toxic much of the time.
Which leads me to my meds! I just realized yesterday that I havnt checked my new ones so Im almost hoping that they do have gluten because that will be my answer and I wont have to turn into a gum addict for the next twnty or so years hha(which for me I know is entirely possible as I do like nicotine a bit too much in general).Intersting to hear that we can get the same symptoms from dairy too. You know whats so frustrating to me and my family even moreso is because weve all been so concious of gluten and I keep getting sick after two years of doing so well, so its got to be something Im missing.I need to figure it out soon as I fear they are begining to secretly think Im just a hypochondriac but I know what I feel, I just wish they could also if even for just one minute. Ill go read the 101 newbie post as well.Yea I think I give up on the tests for a while, I did get a letter saying a biopsy would be the next step but Ive read thats pretty inconclusive as well unless you have total villous atrophy. I stink at math and science too so thanks for helping me reafirm my results!
Food has a powerful impact on the body and mind period but I have a somewhat unique case as I have a history of addiction to opiates and unfortunately past eating disorders as well.When my eating disorder was at its worst it was usually when I had given up opiates and I immediately went to anything with bread or wheat to try and soothe myself.Mysteriously when I went back to the opiates my eating disorder vanished.Im saying this because after getting sober I went into the field of addiction/mental health. I am convinced that in susceptable individuals that gluten can have a powerful impact on the brain and addiction.While I have the physical symptoms after ingesting gluten like brain fog and fatigue, I also have violent bouts of anxiety, depression and a feeling of almost mild opiate withdrawal after I accidentally ingest gluten.
I am very well versed as to what withdrawal feels like,in particular opiate withdrawal, and I agree with coldnight that our reponses are so varied and different that its impossible to make broad conclusions.There is also as coldnight said, a huge difference between addiction and dependency.While most everyones body can become dependent on a particular substance if exposed to long enough, addiction is a behavior to obtain that substance even in the face of of terrible consequences. Genetics, predisposition and life experience it what usually determines how we respond to those substances and sady I got hit on all three levels so I must be extremely careful with everything.
Since becoming gluten intolerant (which I believe was actually triggered when I quit smoking) I have had a MUCH harder time staying sober.Cravings for actual opiates become almost unbearable in the times right after I have ingested gluten.I thought that there had to be some sort of connection so I did some research last night and found this and then came to this site and found this thread. Makes me know Im not crazy. Im on the ultra sensitive spectrum as far as anything goes so like I said while this might sound far out I know theres got to be some tickling of opiate receptors going on.
Im def not saying everyone will have this problem and I dont want to lend to any cause for celiacs being lumped in as addicts because as catslovedi said, docs are fast to discriminate when anything about addiction comes up.Im just saying in some people I think that gluten can have a very negative impact on mental health and addiction.Anyways heres a snipet of what I found from this site( Im new here so hope I can post links, if not moderator feel free to delete).(:
Gluteomorphins: Are You an Addict?
Many people who go gluten-free claim that the diet actually makes them feel worse. This can be quite baffling if one is unfamiliar with gluteomorphins. Common in autistic children, gluteomorphins are opiod peptides formed during the digestion of the gliadin component of the gluten protein (3). For these folks, getting off of gluten can be like kicking a cocaine habit!
The discontinuance of any addictive substance will result in a period of withdrawal lasting a few days to several weeks. In the case of gluteomorphin withdrawal, symptoms can include neurochemical imbalances, altered mood, and gastrointestinal distress. Yes, gluten can be a drug.
An individual whose immune system is making antibodies to gluteomorphins will have a much tougher time in the early phases of a gluten-free diet.
Traditional gluten testing does not look for gluteomorphin antibodies.
Wrapping It Up
Ugh! I hate when my blogs turn out this long. Another antibody to look for is prodynorphin. A basic building block of endorphins, the manufacturing of prodynorphin can become depleted in gluten sensitive individuals, leading to vulnerability to drug addiction, schizophrenia, bipolar disorders, and a form of epilepsy (3).