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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.

Doc Said I Was Super Sensitive
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Yesterday I went to see my new gastro. He actually diagnosed me as a super sensitive celiac. He told me to eat nothing from a box. (no prepared foods) He said that gluten free labeled foods are becoming a fad and that he even suggests to his IBS patients to eat gluten free and that not all of those packaged foods out there are actually safe for celiacs.

So I am officially joining the super sensitives club.

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Wow...I am impressed - great suggestion - yet not common among medical profs. Consider yourself fortunate.

Processed gluten-free products are not good for any newly diagnosed - IMO - they should be used as occasional treats rather than staples.

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Congratulations to your GI for being so well informed. It was a GI in my group who told me too, back more than 5 years ago. Back then there didn't seem to be hardly any awareness of this condition. I'm really glad to see it becoming more well known. Congratulations to those on this forum for helping with that. Still, I read all the time about people following the gluten free diet who still have symptoms or even positive endoscopies who are told either they are non compliant or that they have refractory celiac disease. I find that sad when I know from personal experience that good health can be achieved even when you are sensitive to very low levels by eating mainly non processed foods and following challenge/elimination diet practices.

I hope that you are one of the less sensitive super sensitives. I also hope that you don't find your apparent sensitivity level going down even further as you get your diet cleaner. Best wishes.

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Thanks. It is nice to know why I have kept reacting to packaged gluten free foods. One thing that is bothering me is that I run a low grade fever while glutened and he really didn't know anything about that which concerns me. Do you know anything about that? He wanted to send me to an internal med. doctor which I have already seen and she sent me to him. :blink::wacko:

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Ate something out of a box for dinner and blew up like I ate a basketball. I guess I really do need to listen to the gastro - nothing from a box. - This is going to be hard but I can do it. :)

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Ate something out of a box for dinner and blew up like I ate a basketball. I guess I really do need to listen to the gastro - nothing from a box. - This is going to be hard but I can do it. :)

You can do it...it does get easier. I've been box and bagless for over a year and can't imagine going back -- although I will add some convenient items back in once my stubborn gut heals.

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Lisa, every time I see your profile picture it makes me want to get out there any try skiing! We moved to ski country recently and it looks like a lot of fun!

Thanks for the encouragement, I am going to start no boxed or bagged tomorrow. :)

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I eat mainly from the garden. Real food starts to taste a lot better after awhile. You learn to cook better too. You can do it. It helps to make extra so that you can reheat, though at this point I mainly cook fresh because it tastes so much better. You can grow herbs in pots in a sunny window and they add a lot of flavor. My teenage son eats this way too. If a teenager can do it, you can. You know how much junk most of them eat LOL. You definitely need some sort of treat. I have a honey brand I can tolerate. They just sold the business and I sure hope that they don't change anything. I also grow sugar beets. They make a nice treat too.

I love skiing too, but it's been a long time. We don't have good skiing where I live now.

I don't have personal experience with fever as a symptom of glutening, but I have heard of others, especially children, who have.

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He actually diagnosed me as a super sensitive celiac.

How did he Dx'ed that for you? Some test method, blood test result or by symptoms alone, etc?

I might join the club myself soon.

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Steph, I read in another post that you make your own juice. How would I go about doing that. I do have a little electric juicer. I do have a small herb garden growing in a basket in my living room window. I have been using McCormick spices but I don't think that they are agreeing with me. I do need a treat! Honey would be wonderful. How do you go about finding a safe brand? I saw some local clover honey. Hopefully that would work.

Opa, he said that most of the packaged foods are for people on gluten free diets for other reasons or for weight loss. He said that these companies are cashing in on our disease and it's about money and not helping people with the disease. He said that celiacs should not be eating most of them and that we need REAL food in order to heal.

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I make apple juice. I need a better juicer. I use a centrifuge kind and it leaves behind a lot of pulp which I put in my apple sauce. I have also made grape and pink currant juice which I did by squishing and then straining through a sieve.

I had problems with McCormick spices too. I know some super sensitives who use Litehouse brand freeze dried herbs, but I haven't tried them myself.

With honey, I tried a lot of brands before I found one that I could tolerate. I learned a lot about making honey in the process. I thought they just put the bees in a hive and let them do their thing, but no. There are things they can feed them in the off season, things they give them to treat disease, things they give them to calm them down when they handle things etc. I found a company in Hawaii which doesn't do all that, but their honey is very expensive which is why it is a treat. They just changed ownership of the company so I don't know if they will continue to do things the same way or not. They are called Volcano Island Honey. I hope you can find a less expensive honey which you can tolerate. I wish that I had been able to find a local honey.

I think your doctor is right.

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I am also a super sensitive celiac. I personally hate how 99% of all the gluten free food I still cannot eat because it makes me sick. My sisters and I were struggling for a few years testing out different foods and figuring out what makes us sick and what doesn't. Well we finally figured it out but still test new foods every now and then. I'm glad your doctor told you to stay away from packaged foods, most of them will definitely make you sick! I dont know how long you've been dealing with this but I have quite a few food suggestions if you would like to know some new foods that you can have. With making your own juice, I highly recommend investing in a juicer and getting the "Juicing bible", it has helped my sisters and I SO much. With the lack of nutrients and vitamins you're not getting from the gluten free food juicing is the best way to go about that, it may not taste good but you will definitely feel 100% better!

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I find this discussion very interesting. :)And no, Opa, there is no special diagnosis for super sensitive.

My GI doctor (very celiac-savvy and knowledgeable) deemed me "sensitive" (as I react rather strongly with many symptoms--and for weeks-- to a trace CC glutening) yet I am able to use McCormick spices when I cannot use my own fresh herbs and have absolutely no trouble at all with them.

Also, juicing has caused me mega trouble in the past (high fructose and histamine issues) even though fruits and veggies are incredibly healthy foods.

I get honey from a local beekeeper and I'm fine with it. and I've used other "shelf brands"

I do not eat very many things from "boxes" (but in a pinch, I use Pacific stocks and canned tomatoes )and I almost always cook and bake from scratch, but honestly, I do fine with certified gluten-free companies (for flours, nuts, etc.)

So why the differences with the same "designation"?

I guess this is the problem with varying symptoms and rates of gut healing, the onset of symptoms and most importantly, the delay in diagnosis.

No "one size fits all", I'm afraid.

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No "one size fits all", I'm afraid.

It is probably easier in life for those of us who have grown up knowing that one size does not fit all, than realizing it later in life. For those people who can wear the average hat, the average gloves, the average shoes, to whom the catalogues proclaim "one size fits all", and it fits them, they really may not know that this is not the case -- for anything! I don't even bother trying on anything that says "one size fits all" :lol: from my too-big feets, my too-big hands, my too-big head (no, not swollen, just big enough to cram all my brains into :D ) and, alas and alack!! my too-small boobs (or is that two small boobs? ;) ) So it goes with my life. I have diseases and medical conditions that no one else has (well, extremely rare :P , rare enough they dunno what to do with them at least, if they can even identify them), if a side effect is rare I will have it, and I always have contrarian reactions to things such that I sometimes wonder why I read the warning labels on medications, because if I react it will either be the opposite of what they say or something totally different so that they say "that is not a reaction to that drug".

So does the range of sensitivity to gluten surprise me? (you didn't think I was going to get back ON topic, did you?) No, it does not, Does my reaction surprise me? Yes, it does, because I am not a super sensitive at all, which is why I was able to tolerate my symptoms so long undiagnosed. But I do have sensitivity for those who are, who must be so careful to avoid even the smell of cross-contamination, a danger that for myself I would just kind of laugh at. And fortunately my husband is not a super sensitive either, although I scared him straight _________________showing him some of the DH pictures on the forum after he had his little DH episode from cheating :ph34r:

I hope I am able to look down on the year 2050 when they are sitting around talking about all the stuff we were totally unaware of in 2013, and saying, "How could they not know that??"

So all we can really do is tell people what works for us. We cannot tell people what will work for them or how they will react. I see many people come on the forum, knowing all the answers, and saying "this is what will happen to you". Well, guess what?? It probably isn't. It could be, but you are an n of 1, and unless you have an identical twin nobody has your genes, and even if you do have an identical twin you may develop celiac disease and your twin may not.

So there ya go!!

Happy sleuthing and quick healing, every one of you n's of 1.

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EXACTLY!

I've never been able to wear "one size fits all" either, Shroom. Ample hips and boobs (I prefer the term Rubenesque) :lol: and unfortunately, not long enough legs to be a Rockette.

Mo,

At DX, I could not eat much of anything (citrus, corn, acidic foods, GFoats, legumes, dairy, soy etc--all killers for my gut)

In time, I've been able to add most foods back in.(I have a high histamine problem at the moment, so that takes out a lot of foods, but hey, my life of various illnesses and complications, delay in diagnosis and the road to recovery has not been a straight line, so, I just roll with it.)

Your doc may be right about "nothing from a box"-there are many preservatives, additives, fillers, etc.

that none of us humans should be eating. Some of those things put in foods scare the beejeepers out of me.

I totally agree with his suggestion to eat real food.

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I agree, there aren't just two categories, regular and super sensitive. There are many. Many celiacs notice no symptoms at all. That is one reason why so many are undiagnosed. Then there are crazy sensitive people like me. I keep having to remove more and more and try to grow my own as much as possible.

There are also many with other food intolerances. The best way that I have found to come up with a safe diet is to keep a food/symptom journal, try to change only one thing per week, try to keep track of all variables, and be patient.

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"Thanks. It is nice to know why I have kept reacting to packaged gluten free foods. One thing that is bothering me is that I run a low grade fever while glutened and he really didn't know anything about that which concerns me. Do you know anything about that?"

 

Nothing offcially diagnosed or any articles to draw from, but I used to feel my body temperature fluctuate fairly regularly. I'd get really hot or really cold for seemingly no reason, especially not related to air temperature. Last I 'tested' dairy seemed to cause that too.

But fever is often a sign of infection which is really just a sign of your immune system acting up. Like if you have an infection that your body isn't responding to, you wouldn't ever get a fever. So a low-grade fever doesn't seem out of place to me.

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I have been messing around with a few packaged gluten free items.   I have had bad results.  Migraine, joint pain and digestive issues.  Back to whole foods cooked by me only.  It's not worth the hassle, price or illness that comes with it.

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Hey GFreeMO... I run a low grade fever when I have been glutened. Done it my whole life but when I was a kid they didn't know why. I get the foggy head also and it lasts for a week or better. My doctor said I was super sensitive too. I think we all have some ways in which it reacts with us that differ one from another. My fingers also get bruised badly and then some of them will fracture. I am pretty sure thats from not absorbing calcium. Still I am finding new ways to live everyday and overall life is getting better.

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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. 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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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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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