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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 NoGlutenCooties

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  1. Northern New Jersey Restaurants

    I just found out that there is a "The Counter" that opened in Clifton, right on Rte 3.  I haven't been to the Clifton one yet, but I've been to the one in Reston, VA and the one in Times Square, NYC and they are awesome!  Some of the best burgers I've ever had. And... their fries AND sweet potato fries are gluten free.  And they are the best sweet potato fries I've ever had. They have a separate gluten free menu and they are well trained about cross-contamination. They do have gluten free buns, although I've never tried them - but they do this "burger in a bowl" thing, where they serve the burger on a salad.  And you can build your own burger - meaning you pick the cheese, toppings, and what you want and don't want in the salad, as well as which dressing.
  2. Chef That Wants Your Feedback

    For me, it's butter, sour cream, mayo, and ketchup.  I never trust these in a restaurant because you never know who stuck what in the tub of butter, etc. back in the kitchen.  So even if they had decent gluten-free bread, which I could actually do without anyways, I wouldn't trust restaurant butter.  And naked baked potatoes just aren't the same either.   So offering packets of butter, sour cream, mayo, and ketchup that are known to be safe would be awesome.
  3. What's Your Favorite Gluten Free Restaurant?

    Speaking for the New Jersey and central New York state areas...   Uno's Pizzeria & Grill has a full page of gluten free options, decent burgers, and a knowledgable staff.  They have a dedicated Gluten Free area of the kitchen and typically have separate waiters bring out your food so it doesn't get stacked/carried with the gluten-eater's stuff.  They also have hard cider, although sometimes they only have it on tap and I only trust it in a bottle.   Ruby Tuesday is also good - some better than others.  The last Ruby Tuesday's I was in, as soon as I asked for the Gluten Free menu they alerted the entire kitchen staff and the manager came out to personnally assure me they knew what they were doing and that I'd be safe and that they take every precaution not to cross-contaminate.  (There are no guarantees... but it always makes me feel better when they at least know what cross-contamination is.)
  4. Northern New Jersey Restaurants

    There is a Houston's in the Riverside Mall in Hackensack and they now also understand the true meaning of Gluten Free - and actually know what Celiac is.   Houston's is an upscale steakhouse - quite expensive, but the steak is to die for.  I only go there about once or twice a year.  When I went last year, they kinda knew what gluten free was and I was safe with a naked steak and a naked baked potato.  I went there about a month ago and as soon as I told the waiter that I had Celiac, he knew exactly what I could have and not have.  And get this... <drum roll please> they have Gluten Free fries!  And yes, that includes a dedicated frier.  They had a variety of sides that can be made Gluten Free and they had my food carried out to the table by a separate waiter so it wouldn't get cross-contaminated by my date's Au Jus - which they warned me not to touch, just for good measure.   I can't speak for other Houston's around the country, but this one knows what they're doing.
  5. Pseudo Coeliacs

      I'm with you!  When I first told a friend of mine about the whole Celiac diagnosis and what I couldn't eat, etc. her first question was, "have you lost weight?" - I'm skinny.  Always have been.  There have been times in my life when I have needed to gain weight and couldn't.  But I have never been chubby, let alone needing to lose weight.  I just answered her, "No, thank God!"
  6.   Just to clarify - it's not the gluten that must be in your system, but the antibodies.  And yes, false negatives do occur.  False positives are more uncommon.
  7. Hi Kelscot30 and Welcome!   Your symptoms sound very much how I feel when I get glutened.  Only my intestinal tract doesn't wait until the middle of the night to send everything packing... as quickly as possible... if you know what I mean.  But the sweaty, dizzy, light-headed, chills, ucky feeling... Yep!  Right there with ya! Be insistent with the doctor.  Many doctors just don't get it.  As far as I'm concerned, "IBS" is simply a general non-diagnosis for unidentified intestinal issues.  They don't know the cause, so they label it IBS, tell you to take a pill and relax and send you on your way.  Idiots.  Be sure they give you the full blood panel of tests.  Be insistent.  Be pushy.  Be whatever you have to be to get the message through.  This is your health - don't let a doctor who may or may not know anything about Celiac push you around and keep you from getting to the bottom of your issues.  Your body is telling you that something is wrong.  Listen to it.   If any of the tests come back positive, they will most likely want to do a biopsy.  Always a good idea, as this can confirm the diagnosis and they can also check around for other possible issues.   If the tests come back negative, try a completely gluten free diet for 2 - 3 months.  100% gluten free.  And see how you feel.  If your symptoms improve and start going away, then you know you have an issue with gluten and you likely have non-Celiac gluten intolerance.  Unfortunately, there is no reliable way to test for NCGI other than going gluten free, feeling better, reintroducing gluten, having your symptoms come back, going gluten free again, and having your symptoms go away again.   If removing gluten does not alleviate your symptoms then keep pushing with your doctor for a better answer than "you're emotional".   Good luck!
  8. One other thing to consider... if they're willing to do the biopsy and you wouldn't have to wait long, you could go ahead with it and go gluten free as of today anyhow.  I was gluten free for 3 weeks before my biopsy and it still showed moderate to severe villi damage.  My doctor explained that going gluten free prior to biopsy is not ideal, but as long as you don't wait more than a few weeks then it should be fine.  The damage does not heal that quickly. An additional benefit to getting the biopsy is that they could potentially catch something else that may be going on, aside from Celiac. Keep in mind though - it is possible to have a negative biopsy and still have Celiac.  The inflammation is spotty and comes-and-goes, so it can be fairly easily missed.
  9. With the family history of health problems that you mentioned, I would be comfortable with the Celiac diagnosis that this doctor is willing to provide without bloodwork and biopsy.  Maybe not ideal - but without a gluten challenge and without expensive testing, this sounds like the most viable route to me.   I know some folks on here put quite a bit of stock in the genetic tests, but keep in mind that they only test for 2 specific genes known to be associated with Celiac.  And about 30% of the population have at least one of them - while only about 1% actually develop Celiac.  So even if you have one or both of these genes, it does not rule out NCGI and it doesn't guarantee that your kids inherited these genes from you and even if they did, it doesn't mean that they will ever get Celiac.  And if you don't have the genes, there is still a chance that you can have Celiac.  (some researchers claim you MUST have at least one of these genes to have Celiac, but there are folks on this forum who are officially diagnosed with Celiac who tested negative for either known gene) IMO... the genetic tests are fairly worthless but I know some folks on here disagree.  Just giving you another opinion/option.   Either way, I would be on the look out for any symptoms in your kids and get them tested early.
  10. Hi Fayejw and Welcome to the Forum - you've come to the right place!   First, I'm so sorry about what you've had to go through - unfortunately your story is a common one.  Take solice in knowing that you are not alone.  ((HUGS)) The question of whether or not to get tested is a personal one that only you can really answer.  But I can share my opinion... given the severity of your symptoms, if it were me, I think I would request a full Celiac panel of bloodwork and then that day go gluten free and stay 100% gluten free for life and never look back - regardless of what the results of the test turned out to be.  If after being gluten free for awhile you continue to have specific symptoms you can always continue to search for another possible cause for those particular symptoms - it is possible that not everything is due to Celiac.   As far as how to explain it to others... honestly, I wouldn't bother.  Just tell people you have Celiac.  It's really no one's business how you were diagnosed.  There are plenty of people who are self-diagnosed Celiac and they stay 100% gluten free for life, stay healthy, and don't worry about it.   The full Celiac panel includes the following: AGA (antigliadin antibodies)-IgA AGA-IgG tTG (anti-tissue transglutaminase)-IgA EMA (anti-endomysial antibodies)-IgA Total serum IgA   Good luck!
  11.   Are you doubting that you have Celiac or NCGI and looking for a diagnosis?  Still having symptoms? Without a good reason to have doubt, being that you had severe issues - went gluten free - had symptoms disappear - went back on gluten (or tried to) - and then had such severe symptoms that you could not tolerate the gluten challenge... I'm no doctor but you have Celiac.  If you have a doctor willing to document it on paper as Celiac based on this than it can't hurt.   Or am I missing something? If it were me... I would happily take the diagnosis, continue being gluten free, and never look back.
  12. Please Help

      True - but that's not what I meant.  Coupled with the symptoms I would say Celiac is a safe bet if one of the kids also presents with Celiac.  But you do bring up an important distinction - having a child with Celiac does not mean either parent necessarily has it.  It just means that at least one parent carries the gene(s) for it.
  13. Please Help

      True.  I was adding that to the list of symptoms.  Taking both into consideration I think it's a pretty safe bet that Celiac is the issue.  Not 100%.  But a safe bet.
  14. I'm Celiac and at the time of diagnosis my biopsy showed moderate to severe villi damage, although I didn't have any noticeable symtoms.  Despite the extent of the damage, within a few weeks of being gluten free I found I had more energy, needed less sleep, got fewer night sweats, could think more clearly, and was never bloated.  At 6 months I redid the blood work and my ttg iga was down from 13 to too low to register (under 2)  and one of my other tests (I forget now which one) went from 156 down to 30.   My point is... is that it really does depend on the person.  So in my case, even with the antibodies and the villi damage I was able to heal very quickly and my body stopped generating new antibodies very quickly.  As the others have said, I think part of it depends on how quickly your body gets the message that it doesn't need to create any new antibodies.  I also think that it depends a lot on how healthy you are to begin with otherwise.
  15.   I disagree.  This may be true of many people - especially those who have gone a long time without a diagnosis and those who have really crappy diets to begin with.  But stopping eating gluten is the only mandatory action for a Celiac or NCGI person.  Digestive enzymes, probiotics, a whole foods diet - all of that is great and can really speed up the healing process - but you can't say that it is required of everyone.  I don't think that it is accurate to say that "usually" people start with a strict paleo diet either.  Some do, yes - but I highly doubt that it is the majority.  (I just don't want new folks to read your post and get the wrong idea.)   I know for me, all I changed in my diet was to eliminate gluten.  Nothing else changed.  I didn't have to give up dairy or anything else.  I don't tend to eat much processed crap, so I just kept on not eating much processed crap.  And I've taken digestive enzymes and probiotics for years - so I just kept taking them.  And I'm doing great.