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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.

Super Sensitive And Living In A Mixed Household
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I got glutened from my dad, who wiped his hands, but did not wash them (or even rinse thoroughly) after eating a doughnut before he reached into a bag of my almonds (that I later ate). I am working on my parents into making at least the kitchen gluten-free, and not physically interacting at all with my mom, as she insists upon wearing Aveno products (and she touched my hand after putting on lotion, and I broke out in a rash only where she touched), and pretty much making my dad scrub for surgery before I'll do so with him. I also reacted BADLY to an apple that was cut with the same knife that had cut sandwiches before hand. Both of these, I didn't find out the source until afterwards.

So, I was wondering if there were other people who were super sensitive who lived in a non gluten-free household. Do you have any further tips to keep me from getting glutened? I have so much anxiety at my own house because, although the wheat bread that is used for sandwiches is made on a plate and not directly on the counter, my parents are very messy and will still leave crumbs. I'm so tired of having to wipe down the whole kitchen before every time I cook something, and I am the only one I trust to do my own dishes, as my mom is terrible about leaving residue on plates. The few times my dad had done them, his picture has been taken.

Am I wrong to want, at the VERY least, to want them to make it a gluten-free kitchen, especially since they have made me sick already? I don't want them to never eat it again (well, I do, because I think they could benefit from going gluten-free), and if they want to bring home glutened take-out, they can eat it in the dining-room. They could also make their sandwiches, and put their glutened crackers in their glutened soups there, too.

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I'm sorry to hear about your situation. When I first went gluten free we tried a mixed household. It did not work. My husband got crumbs on everything. So we went gluten free in the house for a period of time. He still would bring home takeout and get gluten all over things like the microwave handle or refrigerator handle that I didn't know about. Eventually I banned gluten from the house. Now all is good as he only eats it at work.

Once while we were on vacation he went to a restaurant and ate a meal while I was doing something else. Later on he came back and we kissed hello, a light on the lips kiss. 20 min. later I got sick. I asked him what he ate and 'Oops' it had gluten.

I can only suggest that you set up your own gluten free kitchen in your room since it isn't your house. Get a dorm refrigerator, a microwave and your own set of dishes that you hand wash in your sink. You will have to buy all your own grocery's and not share with your parents. If your old enough consider getting your own place. If not then I think your stuck with having your own simple kitchen.

Almost forgot to mention, you will need your own cooking dishes, cooking appliances etc. We found that anything without a seam could be cleaned adequately. But anything with could not. So serving spoons that were all one formed piece of metal were OK. Those with plastic spoon, metal handle were not. A glass bowl was OK. A metal pan with the handle bolted on was not. We bought a new mixer and blender as I constantly reacted to anything made in our old ones no matter how well we cleaned it.

Good luck!

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We tried for a year to work out a system which would work with a shared household. The celiacs in the family kept getting sick no matter how hard the others tried be careful. Even now, with our gluten free house with two eating gluten out of the house, they sometimes gluten us. We are very sensitive. I was going to suggest the dorm fridge and hot plate too. I hope you can get it to work.

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We have a mixed household as I am the only gluten-free person. 2 teen boys and a hub eat gluten. They are careful. There is no sticking hands into a box of Chex or bag of nuts. We pour it out. Better for not spreading germs, too.

I think a shared kitchen could work if your parents wanted it to. Obviously, for some reason they don't. Its thier kitchen so I don't think you should tell them how to live. If you are an adult, you should probably get your own place. Maybe this is the message they are trying to get accross to you?

If you are a minor child, my answer would be different. They owe thier minor child a safe enviroment to live in. This isn't safe. Ignoring a childs medical issues and refusing to treat them would be child abuse or neglect. I would advise you to talk to the school counselor and an adult relative or pastor.

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I agree with Karen. If you're an adult living in your parents' house, it's not up to you to tell them how to run their kitchen. Put your dishes, silverware, and a pot or two in your room along with all your non-refrigerated food and go with that. If you are paying rent to them and buying your own food, you have a better case for insisting on some basics (like your own cupboard).

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I had another thought while I was taking a shower. If you still want to live with them, for whatever reason, this might work. You have to be prepared to follow thru if it doesn't. Make a budget, check out the costs of apartments then, with that info in hand, tell them you are moving into your own place. Give them the objective reasons why - very factual, no blaming, no yelling. Maybe take them with you to look at the apartments you can afford. They may want to keep you at home & change thier habits enough that you could live there safely. If not, be prepared to move.

This happened when I was about your age. I had a little bit of college left and had to get an apartment by myself. When my parents found out the "bad " neighborhood I was going to live in, they asked me to live with them until my wedding, for free. I still had to follow the rules at thier house but they made some changes for me.

Good luck.

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You know, ah, maybe it's bc I am 'supersensitive,' but I cannot imagine myself infringing on another's health or, ever taking the chance of doing something that I know could even possibly make another person sick. It's just plain 'insensitive.' It's not like this disease is your option.

I would have a very serious, well-mannered talk with them, trying very hard to be assertive, as opposed to aggressive in tone and mannerism. I would have a few articles for them to read on the subject of cross-contamination when I did, even if they've read many before and I would, also, try to find something that tells of the damage being done upon each contamination - it is delaying your recovery.

If you are underaged, I would consider bringing it up to your doctor, if he is sensitive to the issue himself - many are not. I would ask him for his opinion on the need to prevent CC and get a feel for how seriously he takes it - many do not take it seriously. If you find you have an understanding ally in him, I would ask him/her to cordially speak to one of your parents.

If you are an adult, I would feel no differently. So what if it is their household? You are a member of it and if they don't want to make allowances for you there, they need to straight out tell you, not allow you to stay knowing full well they aren't going to be making concessions or, stay on focus.

Bottom line is that you can't live your life being constantly sick and you need to develop an approach that will allow you to meet with your goal of staying protected. Remember, there is no selfishness in having a desire to maintain your health or, feel well and if others believe you to be unreasonable, it only demonstrates that exact characteristic in them.

Good luck.

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I am looking into getting a dorm fridge... However, I'm not sure if I want to buy one now, since I'm most likely to move out.

I am an adult, who is keeping my parents from being in a financial pickle by paying them rent to live here. I would rather not move out, because I know that would be detrimental to them, but I can't handle being glutened at least once a week, in my own home (I don't eat out) and I'm REALLY careful (washing my hands after I touch anything that could potentially be a source of contamination, washing my dishes by hand and rinsing them for at least 15-20 seconds, using plates instead of counters to prepare food, etc.). It may be their kitchen, but as I'm paying for use of it, it should be in such a condition that it not going to make me sick. Since gluten makes me sick, then it should be gluten free. Or I'm not going to use their kitchen. Which means I'm not going to eat, because I don't eat out... so the only option is for me to move out.

I've tried to talk to my mom about this, and to say that she is resistant is an understatement. My dad is more supportive, but is unable to counteract my mom's strong personality when it comes to things like this.

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if you pay rent, you should have equal say in the running, chores, expenses & rules of the household. However, if these were just 2 roommates who wouldn't work with you, you would move out as soon as your lease was up ( or kick them out).

Your parents are grown-ups. If they refuse to even try to keep the crumbs away from you and your food, you will need to move out. Thier financial problems are not more important than your life & health. I would not want to depend on my kids for money.

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if you pay rent, you should have equal say in the running, chores, expenses & rules of the household. However, if these were just 2 roommates who wouldn't work with you, you would move out as soon as your lease was up ( or kick them out).

Your parents are grown-ups. If they refuse to even try to keep the crumbs away from you and your food, you will need to move out. Thier financial problems are not more important than your life & health. I would not want to depend on my kids for money.

What Karen said.

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I would move out. I was in a similar situation over the summer. my husband deployed and we lived in a bad area before he left so my parents asked me to move in until he returned. My father is very unclean when he uses the kitchen and he is always eating. I was constantly wiping down counters before preparing food. I also rinsed off every bowl, plate, and utensil I ever used while staying there, because my parents really dont wash their hands before reaching for things. I came home one time and my father was unloading the dishwasher, while eating a piece of toast and he laid every single thing down on the counter (the dirty, gluteny counter). I finally decided, after being glutened twice in the first two weeks, everything I wanted to eat would stay in my own room. also, if you don't have room for everything, leave things in the common kitchen on a separate high shelf before it is opened. once it is opened, take it into your room so no one has the opportunity to reach their hands in.

However, in your situation I would simply move out. You are trying to do you a favor and they can't help you out in return. that is selfish and they are adults. No need to be a martyr for our cause. Go find yourself a place and take care of yourself. every glutening means your intestines can sustain damage and in the long run, a lot of glutenings can lead to serious health problems. good luck with your situation

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No matter how old you are or how much rent you are paying, they are your parents and will feel like it's their house to call the shots in. I agree with the others who say make your own kitchen in your room or move out. It's just not safe for you if they will not respect your need to live in a gluten-free environment. Good luck!

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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. 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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." 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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  
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