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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About Chaff

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  • Birthday November 28

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  • Gender Female
  • Interests Chinese history, ultra-running, East Asian languages, knitting, fiction-writing, eating wheat (just kidding)
  • Location Okinawa, Japan
  1. Legumes

    Hi Dilettantsteph -- thanks for your reply.  I should clarify that I'm not posting here on this for me.  I'm posting this because a lot of folks online are suggesting just washing the beans to magically remove the gluten, while Jane Anderson is saying that trace amounts may remain.  I just want to point that out in case there are other sensitive folks like me out there wondering why they are sick.  I have a separate post (the one I linked to) on my own problems.  No one responded there and I suspect the sensitive folks don't check that forum too often.  But it's OK.  (You know, I actually did email Ms. Anderson on this a few weeks ago, but so far no reply.  Oh well. It's OK.)   Anyway, I think Jane Anderson meant that testing would still find the gluten:   Sounds like her scientist friends are actually doing the ELISA test here to confirm results. I ordered some of those tests and some certified gluten-free Eden Food canned beans, and I suggest anyone eating beans from any source other than one where they know how it was harvested (their own garden or a small farmers' they have spoken to) do the same, and not rely on just washing.
  2. Legumes

    For what it's worth, I suggest getting a gluten-free testing kit and checking to see if your beans are safe after washing.  It's the only way to be sure.   Jane Anderson at claims that washing (soap or no) does not really remove the gluten:   I'm inclined to agree.  Most beans are not totally smooth surfaces, so some gluten bits are likely to cling despite washing, unless you are tumbling them in a rock polisher.  But if a few trace bits do cling after soaking and washing, and then you boil the beans, you are boiling all of it in glutened water.  I'm also worried that tiny amounts may gluten the water that the beans absorb when you soak them.     Some people will do OK with washing, because either their beans really are gluten free, or the tiny bit of gluten isn't bothering them.  But you can't know until you test it yourself.   I have a bunch of dried beans from Rancho Gordo I got before being diagnosed, and I'm waiting for my gluten-free test kits to arrive before I dive back in.  In the meantime, Eden Foods tests their own beans and a subset of their beans (dry and canned) are certified gluten-free to 10 ppm: also claims some are gluten-free, but Jane Anderson says they aren't testing rigorously -- there may be some cc from harvesting.   I think that if you do OK with just washing beans, fantastic.  If you're still having problems, go for a certified option.     (I know this is an old post, but I have beans on the mind right now, and others having problems may do searches and come across this.)
  3. Hi Folks,   I've been gluten-free since Nov 2011 (when I was diagnosed after testing) and lately discovered that a lot of my lingering digestive issues seem to be connected to the small amounts of dairy I was eating (butter, hard cheese, the occasional yogurt).  Since I couldn't handle most foods, I'm excited to finally start to expand my diet now.  I'm underweight, but the dairy kept my bloated and without an appetite.  Now I'm hungry all the time!   I need whole grains of some kind because my high iron gives me blood sugar issues from simple carbs, but as you know, whole grains are often contaminated (and I react to gluten-free oats, probably from the avenin, which some celiacs are sensitive to).  Goya's website claims their blue-label beans are gluten-free (though mysteriously they don't make the same claim for their dry beans), although's Jane Anderson is pretty adamant that gluten-free beans from anything but small farmers is a myth.   Anyway, I tried the Goya black beans for a few weeks. It's a fantastic addition to my diet, like, I finally have hope of gaining weight without having blood sugar spikes, maybe even can think of travelling. I routinely wake up late, feeling clumsy, dizzy and stupid for a few hours in the morning.  Folks elsewhere on this site seem to do OK with Goya beans, so I'm wondering if I'm crazy and imagining things or what.      I've ordered some Eden Foods certified gluten-free canned beans and some EZ Gluten tests, but these will take 1-2 months to get to me, because I'm living overseas on a US base.  So I'm checking to see if you all have any thoughts on this in the meantime.  Apart from the beans, I'm just eating my usual diet of whole foods that I prepare myself. My kitchen is shared and contaminated, but I have my own area and equipment, and keep my stuff clean and apart.   Any experience with these beans, or thoughts on whether this could be a gluten thing?     Thanks!   References: Forums:
  4. It's totally orthostatic hypotension. I only get it after my evening glass of wine, but that has never happened before. I checked and alcohol should only be cause if I'm overdoing it, but if anything I'm drinking less than a whole glass. Nonetheless, could be causing dehydration. I have iron overload and eat way too much protein (not by choice), so dehydration from the alcohol seems likeliest. I'll check with the doctors at Mayo next month just to make sure it isn't something more serious...!
  5. I made rice crackers from cream of rice baby cereal, olive oil, and water. It's surprising edible!

  6. I'm Done

    OK, started a new thread on that here:
  7. Kareng brought up a good point on a different post -- what exactly does the medical literature say about problems eating fructose for people diagnosed with celiac? Some of us have it, but most don't. Is it a leaky gut thing? Is it a different genetic condition? Is there even a third factor that I can't think of right now that might be causing it? The question spurred me on to better PubMed keyword searching. I think I ID'd some of the key stuff. It's sparse, though, and a lot of it offers no evidence, but just states it as current medical doctrine. Perhaps I can't find better stuff because I don't have a PubMed subscription and lack basic literacy in reading medical studies? I knew I should have taken BioChem in college, but noooo, I wanted to learn Italian. Anyway, if anyone thinks they may have a severe issue with fructose, please PM me and I can talk with you offline about the fructose stuff, which has a good body of research behind it and a nice group of folks online who can answer questions on it. There's dietary (DFI or fructose malabsorption) and HFI (the scary one that's genetic and causes liver damage). They're basically analgamous to gluten intolerance vs celiac -- both suck but one's proven to be genetic and is more restrictive. Here's the stuff connecting them that I could find: Etiology of nonresponsive celiac disease: results of a systematic approach. "Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue." ( The prevalence and causes of chronic diarrhea in patients with celiac sprue treated with a gluten-free diet. "The causes of diarrhea in 11 patients consenting to this study were microscopic colitis, steatorrhea secondary to exocrine pancreatic insufficiency, dietary lactose or fructose malabsorption, anal sphincter dysfunction causing fecal incontinence, and the irritable bowel syndrome." via Celiac (NIH "Gene Review") "Consultation with an expert dietician to analyze the diet for hidden sources of gluten and to evaluate for lactose or fructose intolerance, which can contribute to poor clinical response to a gluten-free diet...•Assessment for lactose or fructose intolerance is important because these conditions can be responsible for lack of response to the gluten-free diet [Green & Jabri 2003]." The Green & Jabri reference is here, but the abstract doesn't help: 30.Green PH, Jabri B. Coeliac disease. Lancet. 2003;362:383–91. [PubMed: 12907013] ( And two interesting studies (one just a case study) on cooexisting celiac and hereditary fructose intolerance. Yikes! I had thought this was too crazy a hypothesis to be really that likely for me, but it's apparently within the realm of possibilities: Non responsive celiac disease due to coexisting hereditary fructose intolerance "An association between these two distinct genetic gastrointestinal disorders is important as treatment failure of celiac disease calls for careful evaluation for hereditary fructose intolerance" ( And from the flip side -- Hereditary fructose intolerance and celiac disease: a novel genetic association "The possibility of an association between these 2 gastrointestinal disorders is important, particularly in the management of HFI patients with persisting symptoms." ( Anyone have better research on this than I could find?
  8. I'm Done

    Well, I'm not a doctor. And most folks go off gluten and do just fine. But if you want robust studies on food intolerances connected to leaky gut, I would also love very much to see them. I'm desperate for serious medical research into the subject. Until then, we have outlier anecdotal evidence. It's not ideal. The fact is that fructose malabsorption issues are still not well understood, and their connection to the increased intestinal permeability brought on by damage due to gluten in undiagnosed celiacs has never been a direct subject of scientific research. I do wish they'd get in the ball with it, honestly. Until then we celiacs with odd problems like this are left to look to each other for hunches and advice yo go to our doctors with. I'm taking my hunches to the Mayo Clinic next month for testing, and have sent away for genetic testing as well to look for other possible causes, since what I have is unusually severe (though two others here have told me they had the same going gluten-free). But I wouldn't have known where to start without folks here passing along their ideas and experiences. All of which is to say, yes, I totally agree with you.
  9. I'm a 35-year-old woman with hereditary hemochromatosis. I'm supposed to have zero problems til menopause, but in my 20s I had severe iron overload. After the bloodlettings, things went along OK. But now I'm diagnosed celiac and gluten-free...and my celiac anemia tendencies are removed, allowing the iron free rein in my system. It's running in my system like toddlers after cake. So I feel like crap. Yay. Thanks, genes. BUT I also have crazy high blood sugar after eating. This is an Easter egg for iron overload. And since all fructose causes bad things to happen for me (extreme leaky gut issue or hereditary fructose intolerance? Hopefully I'll get some answers soon.) I have to eat only white rice, safe fats, and lean meat/fish. So, basically, a starch-rich diet with tons of iron. Yay once again. Ooh, or mercury, since I hate all seafood but tuna. Did I mention I'm dangerously underweight? And I lost even more when I stupidly tried the SCD thinking this was all just SIBO. I'm up to 99 lbs (I'm 5'2") but I can't both control my blood sugar spikes AND eat enough extra calories to gain weight. Since I feel awful when my blood sugar's above 130, guess which one wins out. Ironically, if I was my proper weight I could just saunter over to a blood bank and shed the excess iron. But with my current condition I'd just do what I always do when someone tries to take a full bag of my blood--pass out. No thanks. Am I complaining? No, I'm blogging. Complaining would be explaining to my coworkers exactly why I can't eat the constant snacks in the kitchen, in meticulous, medical detail. Hells bells, this is a crazy runaround of intestinal delights. Looks like I'll have lots to talk about at Mayo next month.
  10. I'm Done

    Just do a search on the boards here. A lot of people say fructose gave them problems initially. But not most people for sure.
  11. Hm...I get very dizzy upon standing at least once a day, but I have absurdly high iron (serum ferritin in the 250s--I'm waiting for a phlebotomy). I'll look into this further, but I'd love to know if its a celiac thing.
  12. Grrr. Because out digestive symptoms are drama queens. Just when you think you get it, it all changes on you. I hear it gets easier, so hang on. When I feel sad, I read the Crohn's boards and thank my lucky stars.
  13. YES. I hate it. I hate it all. I react this way to fructose, so I eat only meat/fish/eggs and plain rice. PM me if you want to talk about the diet. It's more varied than that and a little tricky to get the hang of, but solves all my problems when I do it right. It's been pretty great. Except the dizziness on standing up. No idea why that's happening and would love to know.
  14. Sugar And Fruit Problems

    Fructose is bad. I stay away from all sweet things except pure dextrose (in Smarties and pixie stix). Causes me no end of awfulness.
  15. I'm Done

    Did someone mention fructose intolerance? Could be that. It's a common thing for us within 2 years of going gluten-free while everything heals. A total mind game to suss out, though, since its in, like, everything. Try plain white rice as your only carb, no sweet things at all, and see if it helps. If it does, PM me and I can suggest some low fructose stuff and dextrose sources that would be safe. Sounds like you're close to that diet already, too.