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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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About Spunky007

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    1. Spunky007 added a blog entry in Spunky's Blog   

      Could It Be?

      Could it really be? I've long since written it off. Especially as I see the previous commonly-missed condition become all the rage now: GI problems = gluten problem. Yet such a rare condition, all be it an extreme one, unlike traditional allergies/intolerances.

      It's caught me off guard in my latest attempt to solve the mess.
      Once again willing to do whatever it takes for a new kind of life--and more desperate than ever to figure it out.
      And once again left confused, lost, even with the most thorough possible techniques to find what I can eat, to establish a baseline and oh-so-carefully build to find "my menu" -types and amounts-that address any food issues or how I eat as works with whatever condition may be going on.
      As I find a more safe baseline than ever-the individualized elimination starting with a diet consistenting solely of a couple absolutely safe foods, my baseline offers initial hope. Massive flareup improving within 24 hours, maintaining somewhat stable.
      And yet it stops there. Normal function does not follow, giving me grounds to test.
      As I tire of the diet without the results, I loosen up on my careful testing plan...

      Once again adding to the confusion is an initial "help" from adding more food. Obvious perhaps, except that it's in foods I thought I knew were problamatic. massive amounts of veggies? Even milk?
      What a mess: from my "happy foods" being anti-normal-problem foods [coffee? Lactaid? chick peas?] to the mixed messages about what can help/hurt. And no means of being absolutely safe to try standard testing!

      With the relief and help from the massive veggies, no real difference with soy or lactose, the laxity continues. Try a new approach...pick up trends. Just maybe, if I've noticed key problems in the past, I can sort through some basics with more careful logging, as I meanwhile establish consistent and adequate intake.
      I keep tally's on questionable foods, hoping to pick up trends: is it fructose? IBS related? certain problem foods?

      And then something odd happens. My steady days continue to improve. Even when I mess up the basics-don't get adequate intake, drink 2 pots of coffee.
      While the symptoms don't evaporate entirely, I find myself feeling more and more free of the constant GI agony. I brace myself to pay the price when I think I'm eating my worst, to find I can handle things like never before.

      I've even purposefully start eating lactose and soy again, even though I've tied them directly to problems in the past, because more research has lead me to believe that these problems are a symptom of the root problem, not an intolerance to the foods themselves.
      And oddly enough, for the most part they don't effect me. I have some of my best moments of GI peace following straight up milk and/or soy nuts.
      Even with my favorite but most problamatic fruit--the apple.

      The only thing I keep completely free of is gluten:
      I want to resist the urge to just say "nevermind" and dive into all the breads and cereals I gravitate towards because I'm tired of wondering, and I know this one needs time.
      I know that it's a matter of my intestines heaing if gluten is the issue, and if it IS at the core of all this, I need to finally find out.
      It's been brought up far to much, since repeatedly, for years now, people I've consulted who know abotu GI matter have brought it up. Said my symptoms really describe a gluten intolerance vs. X, Y, Z [whatever condition I'm exploring at the time].
      From the first time I confided in a professor about my frustration with GI matters hijaking my genuine attempts to eat big, bulk up during my undergraduate education--to this past year, as I continue to repeat the process of "anything and everything, maximal nourishment" only to wind up with a new low physically and a mess of a life, not free at all.

      Now, eating perhaps half as much, I find myself with the kind of results I had always gone for with the "big eating" quests. Not only can I digest better than ever before, but I feel like I had no idea I could! The energy, the strength, the physical healing.
      I feel like all the areas of my life that have been hijaxed due to malnourishment have made a dramatic turnaround, the kind I could only dream of...except it's catching me by surprise because I feel like I'm a good 1000 calories away from the kind of intake I need for that!

      It really does seem to be coming down to the message I've gotten over and over: I have to be able to digest in order to get anything out of the best nourishment possible.
      -just as enjoyment of "whatever I feel like" couldn't matter less when it creates the life chained to the bathroom, surviving in coping mode.

      Deep down, I knew that.
      But I really, really didn't think it was gluten that was the core of it all...
      I was in awe today, at the nonstop energy at my workout, at feeling so great physically and appetite despite a [for me] low calorie, limited options, diet.
      And how my digestion continued to improve as I continued to lose the motivation to apply myself to any sort of makeup guidelines for what I ate.
      And then I realized I was on day 12 gluten free...
      ...followed by another freaky realization: the one day in the last few weeks I had a true flareup was not after a veggie binge or overdoing coffee or drinking milk.
      It followed my eating an accidental flour ingredient in homemade soup--something I didn't realize unti long after the flareup had set in [couldn't have mentally triggered it].

      To think I was just wondering what the point was of holding off gluten anymore, while everything else was "down the drain."
      And I have to reconsider my idea that gluten is most likely not the issue...

      Could it be? the core of it all:
      -why mixed messages other good/bad, why elimination helps but adding helps
      [b/c CAN digest fruit/veg...and those can help...once digestive system working
      problem foods when system destroyed by gluten]
      -why anti-yeast [also gluten free] helped, why easy cereal harder than veggie omelette
      -why I continue to improve to a point of at least "normal digestion problems", to a point where, even if other problem foods are involved, I can identify them in an overall better functioning digestion.
      *And though I have a ways to go before i'd truly consider my GI system "working"--if it can be this different, and on the improvement, after 12 days gluten free while eating more and more helter skelter with everything else: could this really be the "time to heal" so often referred to? And if so...what will it be like after twice this long? A month? The time really required to heal?
      Not to mention that if this trend continues I'll be much more rigorous about all the little things--my toothpaste, cross contamination in a shared kitchen, etc.

      Most interesting is the physical change-so unexpected, so backwards:
      How I've been feeling better and better physically [healing, strength, endurance, energy]-and gaining weight-despite eating less and working out more last week or so.
      absorping = my key to nourishing and results from that I've always wanted!?
      As opposed to the escalating GI disaster and crappy coping mode I feel in when I'm just fixated on "maximally nourishing."
      When I can

      [b]I won't truly believe unless and until it continues like this.[/b][i][/i]
      But the way it caught me off guard from every end: the change in digestion and physical results just when I thought it'd all be getting worse--right when the one thing I've done is continue gluten free, meanwhile losing other variables to consider--I just have to wonder.

      yes, it opens a ray of new hope.
      And just a little bit of terror--what? I might have to live gluten free?
      BUT--it'd be worth it if it got me a new kind of life!
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    2. Spunky007 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      If Gluten Intolerant, Immediate Symptoms?
      After years of ups and downs with malfunctionng digestion, I am so determined to sort it out. I want a different kind of life so badly...a system that works. I can't even imagine!

      Anyhow, first I tried a strict elimination, eating only a few foods I know generally work for me, planning to stick to that until I stabalized, then build. Sounds logical, right?
      Except I can never really stabalize... I improved, ended a big flareup withing 24hr, but the general ups and downs continued.
      When I freed up my diet, things like a bunch of veggies helped. Even lactose [a classic problem] didn't seem to make a difference. yet over the next few days my digestion headed downhill again...

      All this time I HAVE stayed gluten free. I wanted to give it a chance because it keeps being suggesting, though I haven't had any reason to associate it with problems.

      What I'm wondering is, can you tell right away if you have a reaction to gluten? With everythign so messed up anyhow, if I had a period where I was semi-stable [my usual coping mode] and ate, say, a bowl of cereal or regular bread, would I know right away if gluten for the first time in weeks was one of the key causes to my problems?\

      NOTE: I can't get medical help/testing due to severe lack of finances and insurance--please, just share your experience with how I can know whether gluten is a problem or not!
      • 2 replies
    3. Spunky007 added a post in a topic Bread Recipe With Limited Ingredients?   

      Thank you so much! I can't wait to try it.

      I love breads...but have yet to find a gluten free one that tasted like something meant to eat.
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    4. Spunky007 added a post in a topic Looking For Fellow Athletes?   

      Thank you for responding! I guess I rambled a bit and was confusing in my entry though...
      The thing is, I know a lot about nutrition and how to eat healthy, especially for athletics--the part I have a hard time with is the fact taht standard healthy eating DOESN'T WORK if my gut can't take it. So I need to first focus on eating to heal and finding what I can tolerate before everything I can apply about sport nutrition even matters.

      In any case, I'd still love to hear from any other athletes out there, roaring strong [or building to that] despite a touchy gut!
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    5. Spunky007 added a topic in Gluten-Free Sports and Fitness   

      Looking For Fellow Athletes?
      One of the most difficult things with overcoming for me is my passion for athletics. While it is a prime motivator for me to get healthy [i'm underweight, anemic, and can barely function at times through the flareups--makes it really hard to participate in sports for longer than a few good months until I'm out sick/injured again] can also be the biggest challenge when it comes to sticking to my diet.

      I want so bad to be "normal." I love sport nutrition and sometimes just think if I just "eat healthy" everything will heal. Suffice it to say I have found repeatedly that it doesn't work to eat all the nutrients, calories in the world when my body can't digest it. Still, I feel like having such picky intolerances sets me a part and makes me the "sick girl" instead of the athlete.

      In reality I know it's not this way--if I learn to eat what I need, I can build the body and life of the athlete I dream of being. And it would really help to hear stories of other athletes who have or are coming through these kinds of hurdles too--both for friends with similar goals, and so that I know that Celiac doesn't make me a living invalid, but that treating the condition can keep me from being just that.
      • 9 replies
    6. Spunky007 added a topic in Gluten-Free Recipes - Baking & Cooking Tips   

      Bread Recipe With Limited Ingredients?
      I've found several yummy-looking gluten/soy free bread recipes, but most have too many ingredients that i don't have. Does anyone know of any bread items I can make with:
      -Bob's Red Mill all-purpose gluten-free flour
      -buckwheat flour
      -rice bran
      --xanthan gum
      -egg/egg substitute
      • 3 replies
    7. Spunky007 added a topic in Gluten-Free Diet & Weight Issues   

      Hi And Thank You
      This thread [and forum] is incredible! I always thought I was so alone--either the only one struggling with gaining weight because of intolerances, or in the world of Celiac's, the only one who had to also fight to gain weight.

      I haven't been officially diagnosed as Celiac, but after "digestion problems" took a severe downhill slide after graduating college, I've pursued close examination of my diet on my own. I used to just count calories and fight to eat 4000+ a day to gain weight. Suffice it to say this was miserable since instead of filling me up and making me gain weight like it would a normal person, it made me sick, irritable, and have no life outside the kitchen/bathroom.

      I'm only at the very beginning of my journey to health-and LIFE-but after two weeks of finally getting hardcore about cutting out gluten, soy, and lactose [plus some other foods that seem to be triggers] I'm already seeing the improvements!

      It's a rough road, even yet, as I still have confusing flareups for no reason, and almost anything I "put in" to my system riles things up. I still have trouble telling what could be a problem food vs. what is just plain tough to digest when my system is so messed up.

      All of your posts encourage me that I DO have hope--even if I'm written off as the scrawny freak who just doesn't know how to eat by everyone around me.

      I'll be looking around for some good ways to get more calories on a restricted diet and budget! Right now my "happy foods" are nuts and lactaid milk...but even those get old after a while.
      • 0 replies
    8. Spunky007 added a post in a topic Desperate To Sort This Out   

      I should also add that I had biopsies done that ruled out Celiac Sprue. And I am currently without insurance so can't receive additional testing. Someday I hope I can get that-but until then I have to do what I can on my own--one reason I am on here seeking suggestions besides the "see a doctor" [which didn't help much anyways the last few years with a couple Doc's].
      • 0
    9. Spunky007 added a topic in Other Food Intolerance and Leaky Gut Issues   

      Desperate To Sort This Out
      I don't even know where to begin to introduce myself, but I am desperate to figure out what is going on with me-and a solution-and I really need support.

      I have had issues going to the bathroom for as long as I can remember, but as a child it was mostly just that I had to go all the time. During college it got worse to a point of constant discomfort, especially when eating. Since graduating I've developed a rectal prolapse and the problems and flareups have gotten much worse and more constant.

      Additionally, I am quite underweight. This has held me back as an athlete and left me not only feeling disgusting [vanity] but also often labeled Anorexic or Bulemic. More importantly, while I have considerable good strength and energy [i am an athlete] for someone my size, I wonder how long I can last like this I am not medically healthy at such a low weight. Plus, this last year blood tests have shown I am now Anemic and have low blood counts.

      I have gone on several weight gain diets over the years, but it usually takes 4000+ calories consistently for me to gain, something very hard to do when it causes so much grief. Nonetheless, i have fought to keep my intake at 3-4000 cals despite the distress--but at this point I feel like I'm just surviving as my condition gets worse and affects more and more of my life.

      This past year I've tried several eliminations in case of Celiac's or other food intolerances, especially since so many of my "issues" are triggered when I eat. I know I have a problem with lactose and to some extent soy, but solely eliminating those two didn't help much. Playing around with different eliminations and "levels" of fiber intake and whatnot haven't helped at all as my flareups overall are completely random--something that settles ok one day will leave me with a worst episode the next.

      Currently I am trying to completely rebuild my diet from ground zero. Ideally I'd live off of coffee, lactaid milk and cottage cheese--the only things I've found that actually help my gut. I can't be quite that extreme, so I'm settling for trying to get 3500 cals worth of those items + anything free of heavy spices, gluten, soy, or lactose, and also any fruits and veggies that have worsened things in the past.

      I'm on my second day and so far it's about the same. I know it's been barely a chance, but I really want to do this right and I also could use support. I am not entirely sure how I'm going to go from here--I know i need to "test" one item at a time, but I wonder if I'll ever even get a normal working gut to start testing on!

      I'm sorry about the long post, but if any of you have any advice or experiences to share I'd be so appreciative.
      • 4 replies
    10. Spunky007 added a post in a topic Dairy Free With Low Bodyfat Benefits From Dairy?   

      Are you sure? I thought I read one of these articles in specific reference to soy vs. cow milk [saying that it was the cows milk that has been linked to promoting lean body mass]...and both of these are sources of calcium...?
      • 0
    11. Spunky007 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Gluten Free Trial With Dairy?
      I am one week into a gluten free trial. I have had the symptoms of celiacs strongly and consistently for a long time now, despite blood tests coming back normal. Since I don' thave the money to get further testing done, I am hoping that by going gluten free I can improve my condition if it is indeed a gluten intolerance.

      I also began eliminating dairy when I was told that lactose cannot be digested due to the "damaged villi," at least until it heals. I'm wondering, however, if the elimination of dairy is really necessary just to see if gluten intolerance is the problem? I feel like I am hurting my diet with lack of protein and other benefits of dairy, and would rather not continue to eliminate it unless I know that I do indeed have damaged vili from a celiac condition.

      If I eliminate gluten but not dairy, should I still see results if celiac is my condition? Or will eating dairy mess up the results so I wouldn't know?
      • 1 reply
    12. Spunky007 added a post in a topic Dairy Free With Low Bodyfat Benefits From Dairy?   

      For clarification, here's an example of the type of information I am referring to:

      "Zemel looked at 34 obese black women and men who did not eat any more or less food during the 24-week study. Half ate three daily servings of dairy foods in place of lean meat. These people did not lose weight. But they lost nearly five pounds of body fat, gained muscle, had lower blood pressure, and lost an inch and a half around their waists."

      Anyone know why this is and if it's possible to replicate without dairy?
      • 0
    13. Spunky007 added a topic in Gluten-Free Diet & Weight Issues   

      Dairy Free With Low Bodyfat Benefits From Dairy?
      I know this is more a "dairy free" topic, but it seems a large number of us are also dairy free, especially during the first stages of healing from intestinal damage.

      My issue is this: I keep reading articles that talk about how dairy is linked with low body fat. I don't remember all the specifics, but it is something i have read from a number of different healthy sources/newsletters.

      Is there any way to get this benefit without consuming the dairy? I don't think it's the calcium [some amino acid in dairy?]

      If anyone has more info on this [the benefits of dairy and body fat more specifically] and also if it is possible to obtain them dairy free [or not!] I'd love to hear more...
      • 4 replies
    14. Spunky007 added a post in a topic Ideas For Getting Protein, Iron And Calcium?   

      Where do you get these? Do they have them with the nuts and seeds in normal grocery stores?

      Also, I will be trying to eat more lentils and green veggies, but it just seems like <10% at a time is barely going to add up to what I need!
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    15. Spunky007 added a post in a topic Ideas For Getting Protein, Iron And Calcium?   

      About why I took note of the iron levels: I have just been surprised that I don't deal with anemia in the past, since I don't eat red meat and I am a runner. Then I realized I was getting a lot of iron through the gobs of cereal and protein bars. It hasn't been long enough to notice a change now, but my concern is without those I will become anemic.

      I thought I'd get plenty of protein with the beans, nuts, etc. but I counted the last two days and dropped from 12-15% calories from protein to less than 10%! I am an athlete so if anything I need extra protein, hence the concern.

      I might consider an iron supplement, since the point about it being the same thing as a fortified supplement is a good one. I'm also trying to drink more milk replacements for calcium. Protein is probably just going to take more conscious thinking about it than it has in the past.

      Thanks for the help!
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