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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Ideas For A Celiac Living In A Non-gluten-free Home?
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Hi, my name is Rebecca and I was diagnosed with Celiac Disease in 2005. I have been coping well and have learned how to live with it on my own just fine. Recently, however, I moved in with my long-term boyfriend (who is amazing about my intolerance and is always searching for new things I can try), and I am looking for some guidance on how to make it easier to live with someone who is not gluten-free. He tries some of my food but typically prefers his regular food to mine (who could blame him!). I am concerned about the possibility of accidentally being glutened because it is not a 100% gluten-free environment. Aside from being diligent about cleaning, can anyone offer some suggestions on what has worked for you?

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I can't offer advice really, I think I haven't worried too heavily about CC yet. Maybe I am waiting to see if I get sick to see how dilligent I need to be? I don't know. We share a toaster oven. I usually just wipe the rack off with a wet paper towel and then dry it before putting my bread or whatever on it, or I use a tray that only I use if I want to bake something in it. I do have my own colander for my pasta and veggies or whatever. I have my own cutting board. I have a shelf in a cabinet that is only for my things, up at the top of the cabinet so I am sure my kids wouldn't accidentally put anything up there. We don't have a dishwasher and I don't let my kids wash the dishes because they are still young and when they try, I end up having to re-wash everything anyway. I always have tons of paper towels on hand, and clean kitchen towels to wipe down counters, and wipe off pots and pans.

My sis in law has celiac disease too and she is really really dilligent, to the point she won't even make her kids a sandwich on regular bread or ever touch gluten. I will. I will make the kids pilsbury dinner rolls, I will bread their chicken with breadcrumbs, I will make them toast, sandwiches, etc. I simply wash my hands well afterwards. No big deal. There is only ONE thing I will not do...and that is touch flour. I don't know what it is. I will bake cakes with boxed cake mix..but I won't touch all purpose flour. It scares me for some reason, I don't even like having it in the house lol. But dh likes it for when he batters chicken wings he makes in his deep fryer. That is kept in a cabinet where there is nothing I eat in there at all, and I refuse to make him anything with it. But he knows that.

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I'm in the "make most of the shared stuff gluten free". My husband has his granola bars, Fruit Loops, and wheat-based buns. But all the meals I cook, and we eat together are gluten free. (Outside of those buns on hamburgers, of course.) Chicken soup, beef stew, lots of stir-fries, bbq'ed meat and veggies, roasted veggies, salads... We just eat foods that are naturally gluten free. (Ok, I do use Tinkyada if I'm making pasta salad, and wheat-free tamari.)

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I share a kitchen not only with my gluten eating husband who eats with me but with in-laws who are not gluten free and haven't a clue what CC is, how it works or... well they're clueless. I have about 2 dozen dishcloths which I use to clean the counter every time I prepare food. Because I am super paranoid I clean it twice. These cloths then go immediately into a "contaminated" bin for washing. I also clean the knobs on the stove, the microwave handle/buttons, the oven handle if I will be using it and the refrigerator and freezer handles before I begin cooking or preparing food. I do this because normal practices here involve getting butter while making toast, microwaving all sorts of gluteny things, baking cinnamon toast, and other such things. I have completely separate dishes and pots and pans, because I can't rely on the in-laws not to do things like grab a plate while making toast. I also have a completely separate section of counter just for me where I can keep my grill, toaster and mixer.

When I cook, most of our meals are naturally gluten free now. Meat, potatoes, vegetables are all great things. For bread I often make arepas or Brazilian cheese bread, both of which are South American things and are naturally gluten free also. We also simply use gluten free pasta because it is good and the risk of CC when dealing with pasta is too high to mess with imo. When he does have bread, we simply keep it in a separate area, or a different counter while preparing our food. I also have my own section in the pantry and fridge, my own things that get double dipped in, all that stuff too. I have been free of CC since something like Sept or Oct, I would have to check for sure but it has been many months.

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Here's a good topic to read. It's about how we keep gluten-free when living with a WE ( Wheat Eater).

I have red as the gluten-free color. I have a red toaster, red colander, red spatulas, etc. What I couldn't get red, I put a piece of red duct tape on it or keep it in a separate counter from the gluteny ones - my gluten-free cookie sheets are not red, so I keep them in a different place. I can't get red dish sponges so I get pink or purple ones and the regular blue for everyone else. I rotate 2 & put them in the dishwasher every night and get the fresh one out.

Most food is gluten-free. Get San J Tamari soy sauce. Stir frys, BBQ chicken, steak, mashed potatoes, soups, stews, chilis, eggs, etc are all easy to make gluten-free and it doesn't effect the taste.

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Thank you for the suggestions. I am super sensitive to gluten so combining lives in a non-gluten free home is proving to be more difficult than I imagined. For instance, if he makes a sandwich and doesn't wash the counter afterward, I feel like I have to wipe down the counter before I place anything on it for myself. And when you're already adjusting to the normal things that come with learning how to live with each other, it just seems to complicate things even more. I've pretty much lived on my own since I was diagnosed, so this part of the lifestyle is totally new to me (and to him).

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Thank you for the suggestions. I am super sensitive to gluten so combining lives in a non-gluten free home is proving to be more difficult than I imagined. For instance, if he makes a sandwich and doesn't wash the counter afterward, I feel like I have to wipe down the counter before I place anything on it for myself. And when you're already adjusting to the normal things that come with learning how to live with each other, it just seems to complicate things even more. I've pretty much lived on my own since I was diagnosed, so this part of the lifestyle is totally new to me (and to him).

NEVER. Place your food on the counter! Always use a plate or bowl! Get into that habit and your life will be easier. Get him to do that, too.

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Probably not helpful, but have him be gluten free too. At least in your shared home. Too hard otherwise.

If you're super sensitive you have to make sure he cleans his mouth before kissing you, doesn't use gluteny products during intimate times if, um, well, I'm sure you get it (and that includes things like soap that can have gluten), and if he does choose to eat gluten, HE has to be just as diligent as you are with cleaning and changing towels/clothes, etc.

I wouldn't be able to abide the finickiness to live in a shared house. No way no how, I'm far too messy. My BF went gluten free at first just because he couldn't bring himself to be eating yummy food I couldn't eat around me. Because he lost so much weight doing that though, he's stuck to it. On occasion (birthday, bachelor party, etc) he will indulge, but he never, ever brings in food (knowingly) that has gluten. He's absolutely amazing for doing this, I know, but honestly, it would be such a pain in the ass any other way, and I suspect I'd screw up too much for me to ever get fully better.

Also, making 2 meals instead of 1 is just stupid in terms of time and money.

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On the beginning we were a zero gluten house except beer. Fine, since its in a bottle.

Then I added gluteny hamburger buns/hot dog buns since they really disliked the gluten-free ones.

That caused quite a bit of contention because we all had to be very careful...no crumbs, dipping into jars, I had to be served first and I couldn't have seconds.... It was so bad hubs just said forget it. He'll have no bun at all. Now, ironically, neither one prefers burgers with buns. But my son still likes hot dog buns.

Both had to learn to be careful about cc. Don't touch things, eat it on a paper towel, wash hands, etc. It took a year to start allowing a few things in, and I almost always have those as prepared foods in a wrapper that can just be tossed out. I did allow cinnamon rolls from a tube, once, but only when hubs was here to run interference with them and I lined the pan in foil and they ate them all at once :).

So, it's a process. You'll figure out what works for you. Do warn him that you'll treat him like a turd on the floor though...something that must be cleaned up and dealt with. I think that look puts them off a bit, even when you try to hide it.

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We are a mixed house. I did keep getting glutened until I told DH that the whole house would have to go gluten-free if it kept happening, as we couldn't afford to have him off work to look after the kids if I got glutened.

6 weeks and so far so good :)

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Well I do know that getting him to go completely gluten-free is out of the question. He will try a bite of my gluten-free food, but considering the price of it, he leaves it all for me to eat. Most of the meals we have together are naturally gluten-free, but his basics aren't (bread,rolls, snacks, etc). We use squeeze bottles for mayo and those kinds of things so we don't have to buy doubles. But, like last night for example, he came home with fast food and of course it left crumbs on the counter and then I worried about everything he touched afterward. I guess I just need to make him clean up a bit more...!

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"But, like last night for example, he came home with fast food and of course it left crumbs on the counter and then I worried about everything he touched afterward. I guess I just need to make him clean up a bit more...!"

Awww, that really sucks. You have to nail it into him that this is your health you're talking about, that being lax about it isn't optional. It's a complete fail on his part if he didn't even wash his hands after eating. At least if you wash your hands before you eat anything you don't need to worry about doorknobs and stuff. But it's NOT ok to dump a gluten filled bag and then spread crumbs around the house, especially in the kitchen where you make your gluten free food. Totally inacceptable.

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On the beginning we were a zero gluten house except beer. Fine, since its in a bottle.

Then I added gluteny hamburger buns/hot dog buns since they really disliked the gluten-free ones.

That caused quite a bit of contention because we all had to be very careful...no crumbs, dipping into jars, I had to be served first and I couldn't have seconds.... It was so bad hubs just said forget it. He'll have no bun at all. Now, ironically, neither one prefers burgers with buns. But my son still likes hot dog buns.

Both had to learn to be careful about cc. Don't touch things, eat it on a paper towel, wash hands, etc. It took a year to start allowing a few things in, and I almost always have those as prepared foods in a wrapper that can just be tossed out. I did allow cinnamon rolls from a tube, once, but only when hubs was here to run interference with them and I lined the pan in foil and they ate them all at once :).

So, it's a process. You'll figure out what works for you. Do warn him that you'll treat him like a turd on the floor though...something that must be cleaned up and dealt with. I think that look puts them off a bit, even when you try to hide it.

Prickly, have you tried parchment paper? It's sooooo much easier to deal with than aluminum foil. And OP, parchment paper is great to cover your food that you cook in a shared microwave.

My household went from shared to totally gluten-free, then shared again. Squeeze bottle condiments are good, too. I live with Dennis the Menace, but I caved. He can't even get it that he should put his stuff on the bottom shelf of the refrigerator vs. the top, but he likes to pile meat on top of meat in the refrigerator, and doesn't know the difference between an artichoke and an avacado.

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Prickly, have you tried parchment paper? It's sooooo much easier to deal with than aluminum foil. And OP, parchment paper is great to cover your food that you cook in a shared microwave.

My household went from shared to totally gluten-free, then shared again. Squeeze bottle condiments are good, too. I live with Dennis the Menace, but I caved. He can't even get it that he should put his stuff on the bottom shelf of the refrigerator vs. the top, but he likes to pile meat on top of meat in the refrigerator, and doesn't know the difference between an artichoke and an avacado.

I use parchment paper for most baking but this needed to mold to the deep dish so I used foil.

I haven't gotten to the point of allowing gluten (except prepacked sushi) in the fridge. I do have one bag of gluteny hot dog buns in the freezer and double Ziplocked them.

Founds my son eating gluteny valentine candy then sticking his finger in my gluten-free chocolate mocha pecan torte....scraped the frosting off where he stuck his grubby finger and threatened his life.

That's another problem. He's so used to being able to do stuff like that because the house is 98% gluten-free. It just doesn't occur to him he may have gluten on his hands - he's so accustomed to it not being an issue at home. When we do have it (generally) it's a huge to-do and he knows to be careful.

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
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