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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 cyclinglady

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    1. cyclinglady added a post in a topic Not getting enough food, malnourished?   

      Getting tested is your best bet on staying on the gluten-free diet.   It is possible to go gluten-free on your own (like my hubby did) but it is hard.  Not just the diet, but the possible lack of support from medical family and friends.  Ask your doctor to test you vitamin and mineral levels.  No need to guess.  
      Next time notify the the bride to see if the caterer can accommodate you or bring your own food.   But I bet you already have figured that out!  
      I am sorry that you got sick.  Why are you not eating?  Do you cook?  It might be time to learn.  Start with plain meat, fish and poultry and lots of cooked veggies as they are easier to digest.  Hopefully you will feel better soon!  
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    2. cyclinglady added a post in a topic Lindt Excellence 85% Bars   

      Jane Andeson on usually has good tips for celiacs.  I ate lots of yummy gluten-free things in England based on her advice and did not get sick!  This article was published in August 2015 and talks about chocolate.  I buy Endangered Species which is certified and delicious!  Am a diabetic so I savor one square at a time.
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    3. cyclinglady added a post in a topic Celiac and Acne   

      You can always test the zinc for a short period of time.  Make sure it is gluten free!  You are probably right that you could be low in other minerals and vitamins that your doctor did not test for.  I have Rosacea (even the ocular (eye) version.   I noticed that foods can cause a flare-up (e.g. red wine, garlic, etc)  Try keeping a journal. 
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    4. cyclinglady added a post in a topic Pizza pan for Against the Grain Pizza   

      Here is an old link to a 2011 posting about this very subject:

      I can not offer personal advice.  I am have an intolerance to onions and garlic so pizza is out! 
      Dang!  This linked strangely.  Anyhoo......go ahead and click on it and it will open to the entire posting.  Lots of great tips to avoid soggy gluten-free pizza.
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    5. cyclinglady added a post in a topic Can I live?   

      But you said you do have symptoms:  fatigue and low HB (I assume this is low hemoglobin which makes you anemic).  I would encourage you to research the impacts of anemia!  I have two anemias.  One is a genetic anemia called Thalassemia which in my case is mild (hemoglobin just slightly out of range)  But the other is iron-deficiency anemia brought on by celiac disease causing my hemoglobin to drop even lower resulting in  fatigue and breathlessness.  Enough to make my doctors worry about heart damage! 
      Anemia was my main symptom when I was diagnosed.  Just a lucky guess on my GI's part when I went for a routine colonoscopy because I am in the "Over 50 club and all my friends were getting them!"  My anemia in the past was brushed off because one was genetic and the other was attributed to peri-menopause.  Solution?  Have a hysterectomy which I declined after a few other GYN consults out of my network!
      I was shocked about the suggestion of celiac disease.  First, I knew the drill having lived with my hubby who has been gluten-free for 14 years.  I knew exactly what giving up gluten meant.  Second, I had no gut issues (well, only if I consumed milk).  But my blood panel was high (DGP only) and my biopsies revealed a Marsh Stage IIIB (moderate to severe damage). 
      Two months after my endoscopy, I fractured two vertebrae DOING NOTHING!  What?  Osteoporosis?  I had no clue and I am not that old, plus I am an athlete.  I can ride 100 miles on my bike!  I teach a few exercise classes, swim, and run! 
      So, you may not think you have symptoms, but you probably do.  You are just used to them.  Think about it.  I started to slow down, but it was not due to age, but to celiac disease.  I am cranking again on my bike when my anemia resolved by eating gluten free. 
      Finally,  you can develop other autoimmune disorders.  Many of us have more than one (I have Hashimoto's Thyroiditis too!)  So, I encourage you to be as healthy as possible by adhering to the gluten free diet and you might just avoid developing lupus, multiple sclerosis, cancer, etc.
      I wish you well!  Don't forget to encourage  your first-degree relatives to get tested.  This autoimmune disorder is genetic.  Just needs something to switch it on (stress, illness, etc.)!
      I wish you well! 
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    6. cyclinglady added a post in a topic Hyperprolactinemia As A Marker For Celiac?   

      I tested positive to only the DGP IGA when I was diagnosed in 4/2015.  My biopsies revealed moderate to severe damage (Marsh Stage IIIB).  Since my hubby has been gluten-free for 14 years, I knew the diet well.  I never went back for celiac disease testing because I was feeling well and my anemia (main symptom) was resolved.  I got glutened this past July (no clue to the cause but have a few suspects -- foods/meds my hubby never consumes) and had a blood panel done again.  Again, just one positive on the DGP iga.  I have Hashi's (but many Celiacs have it) but I have no clue why I test out this way.  Neither do my doctors.  
      I went originally for a routine colonoscopy (Yep over 50) and my GI noted that I had been anemic all my life.  No kidding.  I have Thalssemia, another anemia.  Found out I had two types of anemia.   I knew when I got my celiac blood test that it was for sure.   Just a gut feeling -- no pun intended.    I ate a loaf of sourdough a day for seven weeks.  By the time I had my endoscopy and colonoscopy I had stomach issues.   I do not recommend this at all.  But I did have time to say farewell to gluten.  Not sure I would do it again.   Who would have thought that both hubby and I would have the same thing!  Took about two years to heal, but I did heal!  
      I hope this helps!  Hang in there!  
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    7. cyclinglady added a post in a topic Been glutened and need some help with a few answers   

      Glad things are improving!  Rest as much as you can this weekend.  Go ahead and have some coffee or tea -- just do not overdo it.  I can not give advice about the flu shot.  Last year's batch was a dud and was not effective.  Hopefully, they'll get it right this year!  They select three strands when they are many strands of the flu virus.  So, it's a crap shoot, but effective for many, especially those really ill people.  I must note that we work from home and not in a high risk environment like a school! 
      I think recent studies do not show any effectiveness of Echinacea.  You might want to research further.  I use those cold tablets that you dissolve in water.  I think it makes me feel better, I doubt that the contents actually work, but the brain is such a powerful healer!  My 14 year old gets colds, but hubby and I rarely do.  I think we have had all strains of cold virus and have missed the new ones!  Washing our hands and disinfecting door knobs while my germy kid is sick helps.  I guess that is one good thing about celiac disease, I have been very careful about not touching my face unless I wash my hands!  
      Ask your doctor to check you for vitamin and mineral deficiencies which are so common in celiacs.  I was severely deficient in iron (ferritin level was a 2).  Check for b-12, folate, and vitamin D for sure! 
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    8. cyclinglady added a post in a topic Interpreting Cyrex Array 3 results   

      Well....welcome to the forum!  Unfortunately, there is a lot of controversy as to whether the Cyrex test is helpful in diagnosing celiac disease and there is no known test for detecting Non-Celiac Gluten Intolerance or sensitivity.  You can read about it here a the University of Chicago's celiac website (leading U.S. researcher):
      But, you can take your Cyrex test results to your medical doctor and ask to be tested for celiac disease.  The blood panel consists of TTG-IgA, TTG-IgG, DGP IgA, DGP, IgG, EMA and an IgA deficiency test (helps determine if the IgA tests actually work!)  Finally, an endoscopy obtaining at least six biopies is recommended. 
      Search through the U of Chicago's website and check out the British and American Gastroentrologists organizations for proper protocol and diagnostic procedures.
      Ask any questions as we are happy to help!
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    9. cyclinglady added a post in a topic Chasing Symptoms for years   

      Did you look up EoE?  Try researching Mast Cell Activation Syndrome.  It has allergy symtoms like face and throat swelling, hives and anaphylaxis, abdominal pain and other symptoms but you test negative on allergy panels.  EoE is linked to Mast cell Activation syndrome.  Those two diseases require epi pins.  
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    10. cyclinglady added a post in a topic New to becoming gluten free   

      There are over 300 symptoms of celiac disease and some people display NO symptoms!    You should make sure you get copies of all your lab tests.  It is your right!  Only you can be your best health advocate (or your Mom!).  You need to really make sure your test results indicated that you have an issue with gluten.  You  do not want to give up gluten if that is not the answer to your problems. 
      I hope you figure it out!  No one wants to feel icky! 
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    11. cyclinglady added a post in a topic Chasing Symptoms for years   

      I agree with Knitty Kitty, you should consider testing for celiac disease (gluten challenge)  after you get tested for a wheat allergy (there is no such thing as a gluten allergy per my research).   Another thing to research would be Eosinophilic Esophagitis.  A few of our members have this issue. 
      I hope you figure it out!
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    12. cyclinglady added a post in a topic Been glutened and need some help with a few answers   

      Getting glutened can happen to the best of us!  There is no quick fix.  Everyone heals at a different pace.  Remember, Celiac disease is not an allergy but an autoimmune response that is triggered by gluten.  It sets off a "flare-up" of symptoms.  It can last a few days, weeks or even months! 
      I was glutened at the beginning of July (unknown source) and then most likely glutened while on vacation, despite my best efforts!  Took me about two months to feel better.  Even went back to my GI to get my antibodies tested.  Results confirmed that I did get glutened.  Ugh!
      I drank lots of water, rested,  ate simple easy-to-digest foods. I also became lactose intolerant again!    Those dairy enzymes seemed to help along with other digestive enzymes when I was really feeling bad. 
      Things are looking up after a solid three months.  I am back to consuming dairy.   Did I figure what glutened me?  Nope.  I suspect two items that my husband never eats.  But I am not willing to test those items.  A few months of being ill is not worth it! 
      Exercise?  Take it easy.  Gentle exercises for now.  Put all your healing into your gut.  I got off my bike for a few weeks.  Started walking, then running and then got back on my bike. 
      Hang in there! 
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    13. cyclinglady added a post in a topic New and Naive.   

      Your question?  This link to the University of Chicago says it all.  Read the entire website.  They are one of the leading researchers in the US.  
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    14. cyclinglady added a post in a topic New and Naive.   

      I am so sorry that you are sick!  Your doctor........what can I say?  You should ask for a complete celiac panel since you have what seems like one positive.  I would get copies  all of your lab tests.  You should completely rule out celiac disease before going gluten free.  I had Hashimoto's for the past 20 years.  It often goes hand-in-hand with celiac disease (not to mention other autoimune disorders).  
      The EMA is usually not the first test recommended by celiac experts and that includes the American  and British Gastroentology organizations!  Time for a GI referral as your doctor does not sound celiac savvy.  
      Here are the celiac tests:
       -Tissue Transglutaminase (tTG) IgA and (tTG) IgG-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG-EMA IgA -total serum IgA and IgG (control test)-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests -endoscopic biopsy - make sure at least 6 samples are taken You have to be consuming gluten for the tests to be accurrate!  Like 8 to 12 weeks.  So you might want to consider eating gluten daily if you want a diagnosis.   (Source: NVSMOM -- 😊) 
      Welcome to the forum and let us know how it goes! 
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    15. cyclinglady added a post in a topic Horrible stabbing pains at night   

      It sounds like you did not get confirmed for celiac disease with an endoscopy which is the normal protocol.  Be sure to tell your GI that you have been gluten-free for a month or longer.  He can check for SIBO, colitis, H Pylori, etc if he orders an endoscopy.  In the meantime, eliminate all dairy.  Celiacs are often temporarily lactose intolerant.  
      Hang in there! 
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