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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.


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  1. If you think there is still some underlaying issue, go back to the doctor for further testing.
  2. Culvers, Is it really gluten free?

    We have eaten Culver's 3 times now.  It has been a good experience.  There is no ketchup, mustard, or mayo put on to save you from cross-contamination.  You should have received single serve packets.  From what I observed,  the buns are placed on a warming rack.  I had one bun out of 4 that the bag was open.  I examined the bun and the area where to hole was and the bun was not even dried out in that area.  So I think the bag broke open to vent while it was on the warmer. I think the right thing to do is tell the business (any business)  what went wrong (as nice and professional as you can be).  The business then can fix the problem.  The business is open to make $$$, they have to know how to make customers happy to stay open.  We need to have places to eat when we are traveling, and this shouldn't have to be over complicated to work into a fast food system.
  3. Sorry to hear you are going through all of this.  ((HUGS)) cyber hugs to you Continue to eat gluten through out your testing.  To really find answers you will probably need to have an endoscopy with biopsy.  Have a full discussion with your doctor to understand what medical issues can be ruled out or diagnosed with the biopsies.  (also make sure the pathology tests for everything possible are being tested. i.e. eosinophils with red dye - no doctor ordered screening = no red dye= no eosinophil count) In the time being... Keep a food journal.  Diet, symptoms, and activities compared to a time log.  In the case of Eosinophilic Gastrointestinal disorders; active damage happens for up to 12 days after a "trigger" has activated eosinophils that may be airborne. Good luck with testing and feel better soon!
  4. At this point, you can get a baseline of where Celiac damage is at.  (It seems you feel strongly that it is Celiac)  An endoscopy can rule out any other diseases/issues that you may also have.  A big problem in diagnoses for gut issues, they can present the same symptoms.
  5. Advice please

    If it's possible, switch doctors.  You need a doctor who works with you, and that includes listening to what you say.  If you ever get a possibly fatal infection that is time critical, you need a doctor to diagnose you as quickly as possible.  (It happened to me.  The doctor's office was laughing so many people had shown up thinking they had meningitis because news coverage of recent deaths in the area.  Problem was I was showing symptoms and had contact with a family member of one of the deceased.  Headache was so severe I could barely talk and doctor didn't even ask me any questions.  Gave me migraine drugs and an antibiotic.  Hours later I was having seizures and was hospitalized.  It really didn't mater that 20 people before me were just panicked, I really had the illness.) You should have been tested for Celiac before you made any changes to your diet.  Now that you are noticing a difference it will be harder to eat gluten for the testing.  If you don't have enough damage from gluten- you can't get a Celiac diagnoses.
  6. Help!

    I've heard of cases where Lyme triggered gluten sensitivity.  Lyme could have "triggered" Celiac. A lot of your symptoms are connected to vitamin B 12 deficiency.  Vitamin B12 is water soluble and is not linked to a toxic level danger.  If you take too much you would most likely get "D".  Are you going to get further testing at your doctor's office?
  7. I think the Nairn's brand has the closest taste and texture. I'm going to suggest you find gluten free sugar cones.  Put your chocolate in the cone, roast your marshmallow to perfection, stuff into the cone, give it a second or two to melt the chocolate, and then enjoy.  It is a little bit less mess, but it tastes AWESOME.  Or use 2 gluten free chocolate chip cookies.
  8. I have seen some claims that a Celiac's blood in a petri dish will react for up to a week once gluten was added.  
  9. Can you call the company and tell them of your experience so the product can be looked into properly?  (the batch number code from the box will be needed to track down any issue) I remember when I was new to the diet a bottle of vanilla was making me sick.  I cross contaminated it before I went gluten free -the product was gluten free.  I was able to track down the vanilla as the problem from keeping a detailed food journal.
  10. Unfortunately it is not uncommon for new to the diet Celiacs to discover they have another food intolerance.  Peanuts are actually in the legume family so beware of soy, chickpeas, and others.  That being said keep a food journal (which you seem to have kept track of what caused reaction).  If symptoms persist, go for further testing.  (after years gluten free I did need my gallbladder taken out-high fat foods caused severe distress.  My daughter was diagnosed with Eosinophilic Esophagitis after about 5 years gluten free from Celiac diagnoses -she had to go on an elimination diet to find food "triggers" that caused damage up to 12 days after consumption)
  11. There are two things that stand out for current research.  Zonulin levels, which are showing up in non-celiac individuals who are reacting to gluten.  Eosinophilic Gastro Intestinal Disorders (EGID)- linked to Celiac disease especially if gluten is a "trigger" the individual.  (but eosinophil levels should have been screened by the pathologists in your biopsy samples- and damage can be seen during the scoping (unless the damage is deeper) While I don't want you to be a human guinea pig (also known as a Cavy), I do want you to be correctly diagnosed so you can get healthy.  If there is any eosinophil involvement, there may be more than one trigger (gluten) that is making you ill.  If you decide not to further test, I urge you to keep a food journal.  The journal may help you track down any other further food intolerances and keep you on a healthy track in your diet.  When you are hungry and the only gluten free item you can find is a bag of potato chips -well you have to be more proactive planning out a healthy gluten free diet.
  12. I would not fully trust the genetic testing. If you start noticing symptoms, you should start seeking answers with a (pediatrician) gastroenterologist.
  13. Best Flour

    What blend of gluten free flours?  I have noticed I have problems with sorghum. 
  14. Every blood test (including genetic testing) has a 30% human error rate. Genetic testing  may have a 98% accuracy rate listed - You can be the 2% error rate. Not all genes for Celiac/ DH/ gluten intolerance are not identified. Genes mutate.  Genetic anomalies do and can occur.  i.e. More cases of chimerism are being identified. You may have to use patient response/symptoms for diagnosing an issue with gluten.  Basically if it makes you sick, don't eat it.  
  15. I'm going to chime in.  Some people are kitchen wipey freaks.  The problem they are using the same wash clothe and wiping everything it.  They are just spreading gluten and germs everywhere.  It may appear clean but it is not. This happens at my sister-in-laws house.  Cross contamination from not even using soap to wash and clean things in between.  (I saw the punch ladle go from the punch bowl- to the turkey juices- under a 1.003 second rinse at the sink ((just water)) - and back into the punch bowl.)  No wonder why I was getting ill every function at their house.  (even just drinking coffee and bringing my own food. using any utensil or plate was enough cross contamination.)  Household where people eat food everywhere but the kitchen table, would also be an issue.  Letting toddlers run around with food is also a big problem. So like Cris, it was almost as if it was breathed in. This site was one of the best resources ever.   You get some pretty good advice from people that have lived through this.   There are now apps for finding product lists, eating places, gluten free drugs.