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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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  1. I'm glad the testing (even though it was a hard long road) was done in such a positive way.  To be presented with information at diagnoses is such a positive reinforcement. Some advice for a child's diagnoses... Keep gluten food snacks and treats available/on hand at all times.  Not being able to eat with everyone else sucks.  Unexpected food celebrations come up all the time.  Having a cupcake in the freezer to join in on the celebration is priceless.  Being on a gluten free diet should never be punishment excluded from celebrations.  Only being prepared can stop that from happening.
  2. My genetic test result from Prometheus labs was very puzzling.  The doctors office did not give me the results, but informed me I was negative for the Celiac genes.  (12 years ago)  Now I really questioned this because my daughter's result was positive for 2 Celiac genes DQ2 and DQ8.  I wanted the test done over again, because they couldn't even tell me if I was genetic match to my daughter. I paid a lot of money that was not covered by insurance. Prometheus labs said NO WAY they would do it over again.  They prompted stated I was part of the known 2% off tests that would not test positive for the gene, genes mutate, and that every lab blood test has at least 30% human error factor. This is from what is considered to be one of the best genetic testing labs of the world.  As they are used for testing Egyptian mummies and other such historical documentations worldwide. Genetic testing is only so far along and now there are more discoveries of chimeras.  That is when one living being is formed by DNA of separate beings.  Think of it as fraternal twin demise with the other surviving twin absorbing the body of the "lost" twin.  If you care to look into this further...  a recent article Unborn uncle fathered man's child or a documentary "I am my own twin".
  3. That is the  "normal" way of getting diagnosed for Celiac when you are eating gluten. All the Celiac genes are not identified yet.  (They were asking for volunteers for genetic testing a few years back.  It could have been 11 years ago by now. ) If you have figured out eating gluten makes you sick, just don't eat it.  If you need a label, you are gluten intolerant.
  4. Did you happen to use any spray starch in the sewing room?  Haven't used spray starch in years to even check if wheat starch is in the ingredients. What about getting a glass top for the coarse wood table?  (If it is a special order size piece of glass, don't forget to get the edges polished. You are fully adopted part of the family here now.  You have Celiac experience.  You can write your own advice to others having child guests to the house.  "House rules :  If you are little and eating gluten you eat in this spot, and this spot only"  
  5. The top 8 allergens are the most complex protein chains to digest. Learning to cook gluten free and egg free is quite challenging.  I noticed a lot of gluten free cooking relies on the eggs to build more texture. There are a lot of ways to replace eggs in baking, but keep in mind what you are replaces the egg for.  Texture (light and fluffy), taste, or to hold the food together? light and fluffy - baking soda - egg replacement powder tastes- fruit puree - apple sauce, banana binder - flax seed and water (let it sit and it turns into a slimey texture I also found using cream cheese in cookie recipes (cream cheese chocolate chip and sugar cookies to roll out and cut )works well if you can have dairy. Also look up other ingredient words that mean egg/ egg protein like albumin. Everyone with food sensitivities needs to know the recipe for "crazy cake" or depression era chocolate cake. * Do not double the recipe in a larger pan. It will not get done in the middle!*  Of course you use a gluten free flour substation with xanthan gum or guar gum.
  6. Ummm.. Look at your daughter's throat.  Are the tonsils enlarged?  Are there creamy spots on the tonsils, back of throat, or tongue.  Does her breath/ throat/mouth have a bad smell? You may have found an "allergen" for her, but what exactly is the reaction she is having? If there is any sign of the above you seriously need to look at information on Eosinophilic Esophagitis.  Unfortunately there seems to be a link between Celiac and EE.  Seasonal allergies play a large part of symptoms flaring up bad enough to get diagnosed.  (late summer early fall)  So there may be a window for proper diagnoses, so you need to look now.
  7. It's now or never for the endoscopy.  Putting your child back on gluten for testing in the future would be cruel and dangerous.  (sometimes reactions after starting a gluten free diet can be more severe, and this can lead to dehydration in young children -life threatening situation that requires an IV) There are reasons to do an endoscopy at this point... Get a a baseline of the damage of the gut which can be important to make sure the gluten free diet is working Rule out any other disease or disorders contributing to symptoms that can be treated, but only if diagnosed. Personal experience for my advice.. Daughter had symptoms as an infant starting foods.  Over 3 month wait to get into the ped gastro, so stopped giving high gluten foods to keep her from being so ill.  So at 14/15 months old she had to consume gluten for blood panel.  Hours after having the blood drawn she became so ill she had to be hospitalized for dehydration.  She was too sick to have the endoscopy done and I refused giving her any more gluten.  (Blood panel had some positives for Celiac - genetic testing results showed positive for 2 Celiac genes - DQ2 and DQ8) She was doing well on a gluten free diet from ages 17 months old till 6 years old.  She would have some issues of any time she started vomiting (stomach bug/ accidental glutening?) she would not stop.  She was hospitalized for dehydration on average of once a year.  Then a really bad illness was going around and she caught it.  She was vomiting blood.  Off to the hospital again.  No further testing could be done at that time.  Wait 3 months to get into the ped gastro.  Finally an endoscope was done to diagnose her with Eosinophilic Esophagitis along with Celiac. So it seems there is some connection between the EE and Celiac.  So don't take any chances of missing a concurrent illness.
  8. You could be having issues with high fat.  If your gut has not healed from recently diagnosed Celiac.  Or keep an eye on your gall bladder.
  9. I don't think I am the best at explaining test results.  Kind of guessing at your test question. ANA is Antinuclear antibodies level.  This is a count of abnormal antibodies that can be attacking normal body tissue indicating an auto immune disease. There is such a thing as gluten withdrawal.  In some individuals there can be an opiate like reaction when they eat gluten. As far as having much more severe reactions to gluten after going gluten free.  Celiac immune system was reacting to every gluten meal, and was working over time getting overtaxed and weakened.  Cutting the gluten, the immune system has been resting and getting nice and strong until it has something to attack.  It attacks full force the next time that gluten is your system and most people definitely feel ill.
  10. Test results -Family/Friends Relations

    I end up posting this a lot.  You really find out who your friends are when Auto immune issues like Celiac show up. The nasty details of physical symptoms Celiacs deal with make it hard to discuss face to face.  We find out family and people you thought were your friends can't be bothered by going to the restaurant with a gluten free menu. It is one of the reasons why this site has been so helpful to so many.  Instant on-line support in your own home when you are too sick to go anywhere. As far as being diagnosed with Lupus, you are going to charge of your health in general.  Eat healthy, exercise (even if it is only meditation or listening to music tapping your feet) 
  11. Have you looked into 4H student exchange?  4H works with colleges and universities extension.  It is more common for farming communities to be involved with, and does not as much as other organizations. Good luck.
  12. Need to lose

    I recently had my cholesterol level checked.  No surprises there, it is always high.  So I listened to my lecture and really tried to make some diet changes.  Well how exactly do I cut out more carbs when I've been on a gluten free diet for over 10 years?Years of pasta and bread making me sick, I really don't indulge that often on gluten-free replacements.  So it came down to eating more vegetables.  (lost weight and went down on some of the cholesterol counts from eating 2 more bites of vegetables per meal) Since I can't think of anything else to do to lower the cholesterol further I am trying psyllium husk fiber.  It is still early but I seem to be losing weight. I don't know if that will help anyone lose more weight, but keep eating healthy!
  13. Are the areas of numbness cold?  Do you have any other signs of poor circulation.  (fine "mushy" hair, messed up fingernails, cold feet/hands that turn blue/purpleish)?
  14. Eosinophilic reactions are like Celiac symptoms a hundred times-fold.  Celiac is your immune system attacking your body tissue, an eosinophil is the top of the line immune defense white blood cell complete with a small shaft/spear of destruction.  Even the weakest eosinophil continues to cause damage for up to 12 days. You need more time to heal.  I strongly suggest you do an elimination diet to figure out what your "triggers" are. the top 8 allergens and peas should be eliminated.  It took 2 years to go through this process with my daughter and you may need to add in an amino acid supplemental formula for added nutrition.
  15. Your spleen is a "mysterious" part of your immune system.  They don't know the exact amount of control it contributes to your immune system, but it is part of it. Severe stress does wreck havoc on your immune system.  A recent mono infection, could still be taxing your immune system too.  Calm down. Stress doesn't do anything good to your body.