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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 Takala

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    1. Takala added a post in a topic Gluten On Dishes? Being Too Careful?   

      I really do not understand the responses to the "I find bits of food on my things" which are claiming that noticing this, and re- washing it because of the possibility of cross contamination in a gluten- shared household, is being "overly obsessive."
      I think this is borderline trolling behavior designed to elicit a protest, besides being bad advice.  Remember that slogan, "not even a crumb?" 
      If you're sharing kitchen cookware or plates and utensils that were used with gluten, that are "supposed" to be clean, and they are not coming up "clean" for whatever reason (sloppy handwashing & rinsing by another person, or a malfunctioning dishwasher rinse cycle) to the point where you pick up a "clean" plate or a pot out of the cabinet, and there is something old and dried on there that you can actually see, (I mean, really, just eeeuwww     )  then keep your kitchen stuff separate and on a shelf or in a cart or upper cabinet which is clearly marked, and it's for your use and no one else's.
      If this is a dishwashing machine that is not getting dishes clean, start by telling the others they need to be really rinsing the dishes off before they get put into it, no matter what the directions say, and try switching dishwasher detergent brands.  I can't believe the crud I've seen on "washed" dishes that were just run thru a home dishwasher by people just assuming they could throw an unwashed, unrinsed dish into the thing.   I live on a well, not city water, and the minerals in this water just doesn't allow soap to lather up easily.  Other people will have the opposite problem, install a water conditioner, and their processed water will be "too" soft, and it just will NOT rinse effectively, no matter what.  For awhile we struggled with this, and ended up taking out the stupid water conditioner, I can outwit the hard water, but could not get things in the dishwasher, nor my hair in the shower, to ever rinse clean without leaving a lot of scum with the "softened" version. Yuck. yuck. yech. (you will notice in other posts I talk a lot about pure apple cider vinegar.... or baking soda.... we get a lot of use out of this here)  If you have a human relative that isn't very good with the handwashing & rinsing dishes routine, just keep your stuff separate, and wash your own.  You can also volunteer to be the person who picks up the dishes after the meal, and rinses them before they load into the dishwasher.  It is exasperating, but trying to get the culprit to notice this problem is sometimes an exercise in futility. We were taught as children to hand rinse anything first, that was going to either the sink to be washed, or to be loaded into the dishwasher, and woe unto them that didn't, so it's just a habit.  I mean, nobody, really wants to see dishes that aren't clean. 
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    2. Takala added a post in a topic Could Be Celiac? Starting Gluten Free?   

      I would suggest you go to the PCP's office, and tell them to their faces in the office that you have symptoms of celiac, that the GI is not agreeing to test for it,  and you need to be tested for celiac by a blood draw lab test, and tell them also if you need AN APPOINTMENT to get the doctor to agree to do this, then they are to schedule one right, right now, and you're not leaving until they do so. 
      Never let your PCP blow you off like that.  And that GI is a real freaking con artist, not looking at both ends of your digestive tract, so I wouldn't bother to go back to him/her after pulling that stunt.  Most of these idjiots think a person has to be thin and wasting away to be a celiac, when many of the undiagnosed adults are instead puffing up because of metabolic, malnutrition and thyroid problems. And of course no one is going to tell you that anti depressants cause tremendous weight gain in an awful lot of people.  I have been stunned by some of what I have seen happen to others, who have taken them for chronic discomfort conditions.  Did you know that the gut is the place where most of the serotonin is produced in the body ?   I haven't seen any studies about the side effect of hormones in birth control pills affecting the function of the intestines, but those things caused me some pretty weird gastro symptoms decades ago, and I stopped taking them because of that. (pity I didn't think thru and get tested further, but the blood test may have been negative for me anyway, and then I would have been tagged as an IBS victim. )   Do the blood test and then figure out what to do next.  If positive, get a referral to a different gastro doctor.  If negative, you might be non celiac gluten intolerant, aka NCGF, and can do a trial of a gluten free diet to see if it relieves your symptoms.   All of these doctors are more interested in the insurance company reimbursements than actually diagnosing someone with something treatable these days. 
      But don't go gluten free before testing, THAT screws up the test results. 
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    3. Takala added a post in a topic Advice On Next Step?   

      You are more likely to get a negative diagnosis anyway because you have been off of gluten for so long, unless you go back on gluten for a long time, even then, no guarantees at all, because damage takes a long time to create, so that still leaves you with the conundrum of what will it take to get you to stick with a gluten free diet. 
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    4. Takala added a post in a topic Baking With Sweet White Rice Flour   

      Usually used in small quantities in combination with other gluten free flour mixtures, not by itself.  It is the same type of rice that is used in sushi, so it is sticky when cooked.  But that would mean the use of less gums, so it's a trade off. 
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    5. Takala added a post in a topic Brown Rice Pasta Sticking To Itself   

      If you don't have a large pot, break the noodles in half before you put them in the boiling, oiled, salted water.  Stir and make sure it is not trying to settle on the bottom of the pan in the begining.  Once done, drain, and rinse in cool water in a colander to get the sticky stuff off and to stop the cooking process.  You then might have to add just a little olive oil again and a little salt and re - toss, you can reheat on a plate if you want it then to be hotter.  (rice pasta is sort of a PIA.) 
      Also, the cooking times on the packages are only a suggestion, and it works best to cook up a single serving as an experiment, timing it from the time it hits the boiling water, then testing it before it allegedly is going to be done.  Overboiling can give you a mushy, sticky mess, too.  High altitude is going to take longer.  
      Agree with Adalaide that the thicker noodles are the way to go with rice pasta, now I prefer them. 
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    6. Takala added a post in a topic Asahi = Not Gluten Free   

      If it makes you feel any better, I had a waitress in a sports themed bar/restaurant try to give me another brand of beer that I knew darned well was not gluten free  to go with my gluten free pizza, saying "and oh, we have brand xxx, gluten free beer."  This particular beer brand isn't even marketed as gluten free.  I said, that's not a gluten free beer, and she says, oh yes it is, it's processed that way.          I really wonder if they don't have their heads up their bums sometimes.  Fortunately I don't drink beer anyway.  I ordered plain water in a bottle just to get the point across.   I've done good with their actual meal there repeatedly, so I don't want to slam the entire establishment, but don't automatically trust waitstaff in busy chain restaurants selling name brand profit makers.
      Last time I was in a bar they let me read all the labels on the diet sodas, and we gave them a nice tip.  I found out that one brand of diet root beer has starch in it.     Now, it is said that starch in North America is typically made from corn, but who knows.  Was this highly processed barley starch ?  I got a different flavor.   Cue theme music from "Jaws."  "dunt dunt duh dunt... "  it lurks, everywhere  .
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    7. Takala added a post in a topic Gluten Free For Non-Celiac/not Intolerant?   

      Most of the talking points against the "gluten free fad diet" are coming from various lobbying interests, who are all trying to jockey for position over the agricultural subsidies given to corporations to grow various crops, and for the biological research and the medical research dollars for universities.  They are using talking points provided by certain "experts" who, when researched, turn out to not be celiac or gluten intolerant, and who are not specialists in the disease, nor educated as gastroenterologists, and who have a financial stake in continuing the status quo.  Others are registered dietitians who, when researched, are just all repeating the exact same talking points from the wheat lobby. The ones who are the most annoying are the ones who are not revealing potential conflicts of interest. 
        Yes, of the "studies" these "experts" quote,  there have been a lot of studies done of the effects of diets heavy in number of servings of whole grains, but the problem is, they are diets based on wheat, and they are not studies of diets based on "not wheat."  Since the mechanism of celiac disease wasn't really recognized in modern times until the World War 2 era, there are no long range studies of successive generations of humans eating modern whole wheat grains vs. studies of successive generations of humans eating whole non- wheat grains as a large part of their diet.  We are not mice.   In fact, it's only been about 67 to 68 years that wheat was recognized as causing celiac, and that celiac is an auto immune reaction, and that's only 2 human generations. So a lot of these pronouncement of what really is and what really is NOT going on is a lot of speculation, as far as I am concerned.  Entire continents did not have wheat introduced as a crop until fairly recently, in the Americas, it's only been here a few hundred years out of anywhere from 20,000 to 30,000 years of human habitation, the same can be said for Australia, Africa below the Sahara, and the Far East, wheat is relatively new, all of which used other forms of starches and carbohydrates until humans migrated out of the middle east roughly 5,000 years ago with dryland crop agriculture, and brought wheat type grains with them, slowly spreading it into Europe and Asia.
      I haven't read the Wheat Belly book (I guess I should get around to it... ) just the reviews and all the food fights on the internet over the thing.  It's just one theory and one book, but you'd think the grain subsidy lobby had found the instruction manual for the End Times.  It seems to be along the lines of the Atkins Diet book from the past, who was another researcher who was convinced it was high starch modern diets combined with high saturated fat from meats which were making people age poorly.  Then, as now, I see a lot of evangelical vegetarian/vegans (you know, the ones who really want all the rest of us to eat like they do  )  really not liking the idea. I did read the Atkins book, I might even have a copy somewhere, because at the time I was experimenting with different diets, it had some recipes, and I was surprised how often what he actually said was misrepresented in the media.   The problem with Wheat Belly is that he thinks all people range in gluten intolerance from so mild they never realize it to full blown celiac and refractive sprue, and yet we do have some people who live to very old age eating wheat, anyway, and some of them do seem to do well on a vegetarian diet.  There are so many other foods which have problems, yet we eat them anyway, I don't know if I agree with his premise.  I think wheat is fine for some people, just not as many people as the wheat lobby wishes.  But I like how he acknowledges there are a lot of gluten intolerants who are not celiac, because getting THAT recognized by the medical profession has been difficult. 
      As to you and your husband's diet, just keep eating whatever makes you feel best.   
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    8. Takala added a post in a topic Coming Back To Gluten Free   

      You can have both celiac/gluten intolerance and a wheat allergy or hay fever or other allergies to any sorts of things.  Allergies = histamine reaction.  Celiac = auto immune reaction where body is bothered by proteins inside and makes antibodies against itself.  Gluten intolerance  = like celiac without the official diagnostic seal of approval™ (okay, that last part was a joke.) 
      Go to a PCP/ regular doctor at first for the bloodwork, because an allergist is a specialist who will be looking for ....  allergies.  I have allergies also, (to some members of the grasses typically used to make hay for livestock)  and yet I've never tested out as a "don't eat wheat" in any test, and yet am definitely gluten intolerant.   No doctor ever tried pegging me as celiac, because to them I just don't look like one, (so much for that Irish part ancestry...  pffffffffzzzzzzzz )  and gut problems were not my main symptom. 
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    9. Takala added a post in a topic Need Advice On 10Yr Dd Results Celiac Mom   

      Pain is not a diagnosis, it is a symptom.   Putting the word "functional abdominal" in front of it doesn't make it less so.  We have pain for a reason - to make us stop doing what we are doing, that is harmful.  If we were back in the stone age, and the grass seeds we were eating caused pain, we'd stop eating them.  No different now other than the societal and cultural pressure to blend in. 
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    10. Takala added a post in a topic Daughter's Dad Not On Board   

      He may be in denial because he realizes he contributed to her genetic makeup.  He may even have symptoms of gluten intolerance or celiac, and he is also in denial about that.  Gluten is addictive, after all. 
      Some relatives are just weird about this.  We've had plenty of people on the boards here saying that their parents are not exactly cooperative or fully believing of the gluten free diet for celiac disease, and they really don't "get" the cross contamination issue and they don't feel like trying real hard. 
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    11. Takala added a post in a topic Newly Gluten Free   

      Avoid processed foods as much as possible, and eat fresh, whole foods cooked from scratch as much as possible.  You also may be intolerant to oats as a small percentage of celiacs are.  Other common cross reactions are dairy (see that you are already avoiding that for now) and soy proteins such as soy flours. 
      You can't undo years of celiac damage in 24 hours.  It is an auto immune disease and damaged tissues will take time to heal from the assault of the antibodies you've made to your own tissues -  IF you stay really gluten free. 
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    12. Takala added a post in a topic Finally Got Into Rheumatology Triage   

      I am thankful I was diagnosed back in the early '80's by an osteopath, because when we moved to a different state nearly 2 decades later, I was rather shocked at how people who are not classic rheumatoid or lupus types are treated, so I tried seeing a couple of equally clueless rheumatologists, and gave up.  If you aren't a candidate for the newer ATNF drugs they won't diagnose, or they'll finally admit to it after way too much storm and drama, and then tell you tough luck, take something otc and get lost. That's actually in the guidelines for the one HMO I had, the "treatment" was take otc anti-inflammatories like ibuprofen and not bother them.  I'm lucky I didn't fry my kidneys and liver doing that, but that's how I survived for about 3 decades.   I did a huge amount of research and figured if I could stand the discomfort and avoid the real drugs, I might have better chance of living not quite as messed up as the people who were doing the heavy duty drug therapy, anyway.  State of the art American medical care, 20th - 21st century, slightly better than applying leeches.  Best treatment I had was the lady PCP who sent me for physical therapy, probably a life saver, so I haven't fused up, but I have to be vigilant.  I continue to be amazed that I am this much more flexible off of gluten, even at this age.   
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    13. Takala added a post in a topic Dental Horror   

      I don't have a dental horror story other than the wisdom tooth extraction.  Decades ago, I lucked into my husband working with a co worker who's dad was one of those old school dentists and who was on the state dental review board, so he took me on and made recommendations for things with the other types of dental work.  For the next extraction (before the braces they needed to take out some little biscupids in front of the molars) I insisted on being awake, and the guy was surprised that I only wanted to be numbed, but did an outstanding job, easiest thing I've ever done. 
      I cannot open my mouth normally all the way because of the arthritis in my jaw, which any competent dentist could see in an x ray, it's not like they don't take enough scan pics to realize this.  I remind dental persons of this anyway before they come near me -  I Cannot Open My Jaw Normally, so Don't Try To Force It.  My 2 upper front teeth have also been loose for over 30 years, so don't hit them hard.  So they are cautious.  This "feature," which I've read on other threads here, is also common to celiac, so I guess it can go with gluten intolerance, too.  
      You know, get the hubby to tell them that you absolutely cannot see Dentellion -The - Barbarian again because it's so painful you are going to have to report him to the state dental board if they don't get their act together.  (In fact, put this person's name in some search engines and root around and see if he has any other complaints against him or if he just moved here from another state, and you can call his old place of employment up or check out if he graduated from some cheap fly by night school.)   In fact, it's so painful you can't talk on the phone.  The regular dentist should finish this project.  This stuff really should not hurt that much, and you shouldn't be their training dummy.  And call your PCP and insist you need something for the anxiety for these dental appointments, and ask if the meds you are on now are contributing to this reaction.   
      The worst shots I've ever had was once an incompetent moronette was attempting to put in contrast dye halfway thru a scanning procedure, and I had put myself into such a deep meditative state that I accidentally lowered my blood pressure so far she couldn't find a vein if her life had depended on it.  And I wasn't supposed to move.  After repeatedly jabbing me she finally hit a bone in my wrist, and I still didn't move but managed to use a tone of voice which intimidated her enough she went to get help, something along the lines of "Do Not Touch Me Again With That, Or I Will Scream."    This second person then finally found a vein in the other arm (duh!)  and put the needle in a manner which was typical of someone who wasn't trying to stab a pile of truffles underground with a pitchfork.  I had bruises all over my arms after this first idiot, who was also rude to me when I didn't spring up off the scan table fast enough afterwards,  and I complained in written form,  but she was still working there a year later when I had to go back for another one.   I took one look and told them "Not Her" and they had another person in the room with me.  The second time was Halloween week, and this same nasty tech who had kept sticking me shows up to take me back to the machines, wearing, get this, a freaking Halloween costume as if this is funny and comforting to people who are having diagnostics done for neurological problems.  I bet they thought I objected to the costume.     
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    14. Takala added a post in a topic Gluten Free Before Endoscopy?   

      'Tis better to err on the side of caution, however, if your birthday is a big gluten blow-out typically, you might want to start to experiment with gluten free treats for that, such as a special gluten-free cake, ice cream, homemade pizza on a gluten free purchased crust, gluten-free beer or soda, etc, but keep consuming at least 2 servings of the glue- poison per day. 
      My husband isn't gluten free, but eats that way at home, so we had buckwheat chocolate pancakes twice that week he had a birthday, with coconut, chocolate chips, and chocolate- almond spread and sweetened yogurt.  I made some other stuff that week that was also a little fancier than the usual meat/vegetable routine, like Indian curry sauce, (mixed my own curry powder) and I think we had a homemade pizza crust in there.  The regular food doesn't appeal to me at all, because of how it makes me feel, and pizza is pizza if you get whatever concoction of crust that works for your food intolerances halfway there.   
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    15. Takala added a post in a topic So Confused   

      So, keep up the good work and send her next time with her own gluten-free personal pizza and cupcake.  A lot of people make these in batches, or at least keep pizza crusts in the pantry supply, and freeze them for when needed. 
      Individuals vary on how may hits they need before they become sick from eating gluten. Even diagnosed celiacs will sometimes be able to cheat and think that because they didn't get really sick, nothing much was going on.  Wrong. Even though I'm "only" gluten intolerant,  I have gotten a lot more sensitive over time, and really don't want to cause any more damage at this point, I'm screwed up enough.  Just my eating out now sometimes at a place which is very good about gluten free, will give me subtle symptoms sometimes over the next 48 hours, I will be just a little bit "off."  This is my body reacting to cross contamination that others won't notice,  and it will, over time, set off a big auto immune flare if I am not careful.  If I had only known when I was younger, I could have had a much different sort of adult life. 
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