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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.   The quoted section ends up not being about Celiacs.  The quoted section is pointing out the odd experimental result that when you give the original wheat product that has starch and gluten together, that this gives a much different digestive result than taking the gluten-free wheat starch and adding the gluten back in separately.   It's interesting information in any case, and it might partly explain why some wheat meals cause dramatic effects for Celiacs, but other wheat meals meals seem to be much more benign.   Again, I'm accepting your point and every else's point that Celiacs have zero tolerance for gluten in any form.
  2.   I think you are right about this.   The way it is presented - particularly in a chapter about Celiac disease - is a little misleading.   Thank you for making this clear.
  3.   Specific Carbohydrate Diet (SCD) is not the invention of the author of the book I quoted.   The SCD was created by Dr Sidney Haas, one of the most respected doctors and early investigators of Celiac disease.   In reviewing the citations in the section I quoted on Pubmed, you would be surprised at how little research has advanced in 20 years.   I guess the research grants are all going to cancer drugs.
  4.     Wheat starch is the carbohydrate portion of the wheat.  Gliadin is a peptide.  It is possible to separate these two elements, leaving just the pure carbohydrate.   Are you asking me what is the chemical process by which these two are separated? It's not clear where your confusion is or what your question is.   It is interesting that some studies show that when you feed just wheat starch - with the gluten removed - to celiacs, they do just as well as a stricter gluten-free diet:   Other research acknowledges this point but makes the additional point it is not well studied or understood:   I'm going to accept at this point that combining gluten to gluten-free wheat starch is probably not a great idea, for a Celiac.     Another fantasy bites the dust.   Just as a point of order:  the Specific Carbohydrate Diet (SCD) is one of the best respected nutritional approaches to inflammatory bowel disease.   It's not just another diet book.  I would also ask you to review the history of the Celiac disease.   One of the most important figures of the last 100 years in this disease is Dr Sidney Haas.  In 1951 Dr Haas published a famous book named "The Management of Celiac Disease" which advocated the SCD as a treatment for Celiac.   Many Celiacs who partly resolve their symptoms by removing gluten from the diet later completely resolve all symptoms by addressing the more stringent dietary restrictions of the SCD.
  5. I'm reading the book "Breaking the Vicious Cycle" which is basically a short summary of the Specific Carbohydrate Diet (SCD) used to treat inflammatory bowel diseases.  The SCD diet is much more restrictive than a Celiac diet, and it does not allow grains.   The chapter on Celiac disease shocked me with the following statement, based on recent research:  "...when...low gluten flour is baked into bread together with the separated gluten, starch malabsorption does not occur in spite of the fact that the same amount of gluten is present in the baked product as was present in the whole grain before gluten extraction.   Since absorption of the wheat starch is complete, there is no resulting fermentation and intestinal gas."   Has anyone had experience with doing that?   I always used to be puzzled by how some gluten meals would cause me incredible distress, and others would cause no reaction at all.   Now I wonder if the above observation doesn't explain this result.   In our world of processed foods, the "smart" food processors may be buying low gluten flour and then mixing in the gluten separately, in order to control gluten concentration more carefully.   Those products may be failing to produce the more violent reactions we all know and love, that occur only when the gluten is closely bound in original form to the wheat starch.   Knowing the above makes me wonder if I cannot occasionally have a cheat day and have a real gluten pizza, just making it using the above trick and making sure the starch has no gluten bound to it in the original form, adding in the gluten as a separate ingredient.   I'm on the SCD diet, which is even more restrictive than gluten-free, in that I am forbidden from eating all starches and even simple disaccharides like sucrose.   So eating a pizza crust with gluten in it would be a double cheat for me:  cheating on the gluten from the wheat sensitivity and cheating on the SCD with large starch meal.  
  6.   I think it is awful to not have the support of your loved one when you are suffering from a disease.  If he is a "only the strong survive" type I guess that is food for thought.   If it makes you feel any better, I started out thinking I had celiac, and ended up finding it was a gluten intolerance but combined unfortunately with an extremely poor absorption of carbohydrate.  I have to avoid almost all starches (e.g., all grains, potatoes, yams, rice...the whole shebang) and I also have to avoid sucrose.   I do okay on simple fruits like berries that are mostly separate monosaccharides glucose and fructose, and I avoid fruits like bananas that have high sucrose content.   You might want to read the book "Breaking the Vicious Cycle" which is the main popular book discussing the specific carbohydrate diet.  I think a lot of people with gluten intolerance resolve about 60% of their symptoms by coming off wheat and they never understand how to address the remaining 40% through detailed understanding of carbohydrates.
  7.   I believe the celiac antibodies are all IgA type not IgM.   I have selective IgM deficiency, but have none of the usual respiratory or allergic conditions associated with it.   I have horrible reactions with wheat: the full set of symptoms associated with celiac both intestinal and neurological.   However I test negative for the IgA celiac antibodies, so my gastro tells me it cannot be celiac.   I think there are many immune type responses to food, and celiac is simply a specific one they know how to identify.
  8. It looks like I may have some kind of issue with absorption of fats.   I had a high fasting glucose and decided to treat that with a low carb diet.   When I changed over to higher fats in diet, I started to lose weight rapidly and could not control the weight loss.   They are checking fat absorption now, but it all comes together for me that the weight loss and moving to higher fats have to be related events.   How common is this condition with Celiac?   Does anyone know of a doctor in the US who specializes in fat malabsorption issues?  I actually want to avoid carbs and want to find a way to work around this fat issue, possibly trying to figure out which fats I best absorb and focus on using those instead of the ones that cause me problems.    It would be really good to work with a doctor that specializes in these kinds of issues.    
  9. Is there a comprehensive directory of all gastroenterologists in the US that have a celiac specialization?
  10. Sharkbaitgirl, the tricky part about celiac - in my opinion - is that there are usually sensitivities to other foods, not just wheat.  These are either cross reactions, separate but similar immune responses, or malabsorption like FODMAP issues.   It's actually incredibly difficult to manage all of this, and I question whether any doctor in the Bay Area really has all of the breadth needed to deal with the full scope of issues.
  11. Hi, I am also interested in a list of gastroenterologists in the South San Francisco Bay Area who specialize in Celiac.   The Stanford program is run by Dr Gary Gray.   He is very experienced but is also close to retirement.   I'm hoping to find a celiac specialist who will be doing this for a long time.   I'm also interested in finding a celiac specialist who is not afraid of Cyrex food sensitivity testing.   Most doctors won't get near these tests because there are too few peer reviewed studies showing efficacy to a large population.