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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Newbie Info 101

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Additional products people ask about:

San-J Organic Tamari Gluten Free Soy Sauce is available.

McCormick single spice/herbs and vanilla are gluten free.

For spice blends, be sure to read the labels!!

Spice blends can not hide grain (gluten). Seasoning blends are a whole different ball game.

Edited by psawyer
Spices are not the same as seasoning.
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If you wish to add to this discussion, please post here

Appropriate comments will be merged into the thread.

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Updated 11/1/12 by IrishHeart

A list of symptoms and conditions associated with Celiac from the Univ. of Chicago Celiac Disease Center

(adapted from Cleo J. Libonati's book Recognizing Celiac Disease)

I had dozens of symptoms myself and found that most short lists do not include them all.

This may help.


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Updated 1/2/13

Some advanced members felt this explanation of using the multi-quote option would be useful to new members.

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Updated 2/1/13

An excellent resource for celiacs ( Honestly wish I had found it 2 years ago--would have saved me a lot of research time!!)

Still plenty in it for me to learn.

Articles by more than 50 international experts. Not "too techie", short enough chapters ... and very enlightening.

Covers just about everything imaginable: the disease itself, obstacles to healing and solutions,

nutritional advice, trouble-shooting other food intolerances, related conditions, etc.

I was thrilled to see Dr. Gaundalini talk favorably about using probiotics.

I highly recommend it.

Real Life with Celiac Disease

Melinda Dennis, MS, RD, LDN Daniel Leffler, MD. MS

The Celiac Center at Beth Israel Deaconess Medical Center, Boston.

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Updated 11/22/13

Additional suggestions for avoiding cross contamination in your home.




• Don’t use wooden spoons or cutting boards that also are used to prepare gluten-containing foods because the spoons and boards can harbor residual gluten and bacteria. Metal or plastic are better options.

• Cover shared grilling surfaces when barbequing because unless the grill reaches 500˚F or higher for 30 minutes or longer, grilling won’t eliminate any residual gluten.

• Buy a separate waffle maker or bread maker if the one the family uses doesn’t have parts that can be disassembled and placed in the dishwasher.

• If using a separate toaster isn’t possible, use toaster-safe toaster bags such as Celinal Toast-It or Vat19 ToastIt, available online.

Pam Cureton, RD, LDN, a dietitian at the Center for Celiac Research at the University of Maryland, adds these tips:

• When planning parties at home, prepare a buffet of foods that are 100% gluten free to prevent accidental cross-contamination among family members and guests.

• Buy squeezable condiment containers for ketchup, mustard, and mayonnaise to prevent double dipping. If you don’t purchase squeezable containers, mark condiment jars as safe depending on whether they’ve been exposed to gluten-containing foods.

• Store gluten-free products on the top shelf of the pantry or refrigerator so other foods don’t accidentally cross-contaminate them.


Shelley Case, BSc, RD, president of Case Nutrition Consulting and author of Gluten-Free Diet: A Comprehensive Resource Guide, offers the following ideas:


• In supermarkets, don’t buy unpackaged foods stored in bins. The scoops used to place the foods in bags or containers may have been previously used on nearby gluten-containing foods and may not have been sufficiently cleaned.

• Use different colored stickers to distinguish between gluten-containing and gluten-free products in the pantry and fridge.

• Purchase a colander in a different color for gluten-free foods so it doesn’t get mixed up with the colander used for gluten-containing foods.

• Buy gluten-free grains that are certified gluten free to ensure cross-contamination didn’t take place during processing.

• Buy gluten-free flours marked as gluten free from reputable companies that are more likely to test for gluten.

• Avoid purchasing imported foods. Other countries may not abide by the same gluten-free standards as the United States.





Found here:



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New book with lots of good info:


Gluten Freedom by Alessio Fasano, MD 

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some good info 


Just 1 of the ingredients covered -


"Why it’s on worry lists: Maltodextrin can be made from a variety of starches, including corn, potato, rice or wheat.

Why you don’t need to worry: The source does not matter because maltodextrin is such a highly processed ingredient that the protein is removed, rendering it gluten free. Plus, if wheat is used to make maltodextrin, “wheat” will appear on the label. This might give you pause, but even in this case, the maltodextrin would be gluten free. In Canada, maltodextrin made from wheat was tested with one of the most sensitive tests available and no gluten was detected."

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    • trents and Tony G, see the canadian site that lists many updated resources. it is rare but does happen (oats sensitivity) in a small number celiac's.  I didnt' see what percent that was though. https://www.canada.ca/en/health-canada/services/food-nutrition/public-involvement-partnerships/consultation-celiac-disease-gluten-free-claims-uncontaminated-oats/consultation.html the gluten free society summarizes the "oats" issue well. https://www.glutenfreesociety.org/are-oats-safe-to-eat-on-a-gluten-free-diet/ quoting "The studies above were all published after Jan. of 2011.  In medicine, it can take 20-30 years for new information to become common knowledge among doctors.  So I don’t expect that many physicians will be talking about the potential for oat to be a problem for those with gluten sensitivity." and they term it a "subgroup" as often is the case many times we as patients often know our bodies better than the doctor's do. Tony G as for the mouth uclers. swilling with salt water will help them go away quicker. but taking the amino acid Lysine will help your ulcers/caneker sours stay in remission.  take it 1000mg at a time with each meal and 3 or 4 days they will mostly go away especially if you use the salt water method with the lysine. you can take lysine ahead of an outbreak too to keep them at bay. ***this is not medical advice but I hope it is helpful. I only know it helped me. I used to take Lysine but don't need it much anymore these days. your arginine/lysine balance is out of wack.  You can google it. oh . . the red sauce (tomatoes) you described is exactly what caused my mouth to be sore/raw right before an out brake.  I usually could take them for a a week until they went away on their own unless they got on my tongue and then only eating one side was more than I could bare and out would come the lysine and salt water. . .  Until I learned to take it (lysine) to keep them at bay and my lysine/arginine ratios  in balance. again I hope this is helpful. posterboy,
    • The first symptoms I noticed were giant hives on feet, palms, scalp, and down spine, that would leave  extremely painful areas after disappearing. The were preceded by a metallic taste in the mouth. dermatitis herpetiformis on both arms and ankles. heart palpitations, foot drop, numb hands, hemorrhoids, pain in cecum area, the usual stool problems with extremes of both. Severe pain in all my broken bones and old injuries. Eye twitching. I did an elimination diet starting with gluten. Angioedema went away immediately, but other problems persisted. Cut out all grains soy and dairy, and other symptoms went away except for dh. Cut out canola and the dh. went away. Then i bought some store meat, fresh cuts, because I ran out of my homegrown meat, the dh came back, along with the nerve problems, so I quit eating meat until I got a pig back from the butcher. Tied that meat and the dh and nerve symptoms returned again. Note all along I was eating organic produce from my own garden, other than in winter. Went vegeterian over the summer and felt great, untill winter hit and I was forced to by food from the store. All symptoms except for the angioedem returned. This is my third winter gluten free, and I'm down to eating locally bout organic potates, organic kale from the store, bananas and avocadoes. Dh is less severe, but the stomach problems, cecum pain, and nerve issues have returned and gotten worse. I literally eat the same thing every day. I cant get tested because I am self employed and cant afford insurance, ineligible for medicare/medicaid. 33 year old male, feel like Im going on sixty. Thinking I might have to move to a country where I can grow organic produce all year around, or I might die. My wife also started having the same symptoms, but much less severe, about 6 months after me. We were buying high gluten organic wheat flour from the co op and baking our own bread before all this started. We think that might have been the trigger. Anyone have a situatiion like this.? As far as possible contamination I think its in the air in the store? I drink organic coffee, black. No spices or seasonings, no sugar, literally potatoes, kale , bananas and avocadoes. I don't know what else to cut out. I'm down to 140 pounds.
    • jmg, I am sorry I tried. That is true for cheese -- it can not be made casein free according to livestrong but you can take lactaid for the lactose portion of milk.  Or drink lactaid brand milk or ice cream. at least then you will know if it is the lactose or the casein that is the problem. And they do make lactose free cheeses . . . . so that is something.  And they will be labeled as such so you don't have to worry about getting the wrong kind of cheese accidently. find some kefir it is 99% lactose free if it (dairy) still bothers you it is probably the casein. I hope this is helpful. posterboy,  
    • After a 2 week gluten challenge..... Immunoglobulin A, Serum - 85 Low Deamidated Glaidin Abs, IgA - 3 Normal Deamidated Glaidin Abs, IgG 24 High t-Transglutaminase (tTG) IgA - 2 Negative t-Transglutaminase (tTG) IgG 2 Negative Endomysial Antibody IgA Negative
    •   Johny_Cage, I didn't see where knitty kitty mentioned B-3.  It is best to take it as the non-flushing Niacinmaide form with each meal. It usually take 3 months to notice an improvement often when taking B-Vitamins because it takes that long to fill up the liver where we store most of our B-vitamins. see this link about B-vitamins and depression entitle *B*  "Vitamin supplementation for 1 year improves mood. https://www.ncbi.nlm.nih.gov/pubmed/7477807/ Also see this article from nutraindgreidents about ow some Parkinson disease can be helped with Niacinamide supplementation. https://www.nutraingredients.com/Article/2017/01/11/Vitamin-B3-may-benefit-those-with-Parkinson-s-disease they note it might only work in specific parkinson patients but it might be worth trying. You might try a homoecysteine tablet too or taking a b-complex has the same b-vitamins found in a homecycysteine tablet. https://www.researchgate.net/publication/6471099_Homocysteine_and_Parkinson's_disease_A_dangerous_liaison there are making break throughs every day (literally) see the new research on PD and intense exercise.  Hang in there.  There is more hope than ever. Here is the latest research on Parkinson's disease and intense exercise from the NYtimes. https://www.nytimes.com/2017/12/13/well/move/exercise-may-aid-parkinsons-disease-but-make-it-intense.html ***this is not medical advice but I hope it helps you to know headway is being made on Parkinson disease if your mom is having tremours and you suspect PD. my heart goes out to you -- my mom had dementia and suspected but never confirmed alzheimer's. Again I hope this is helpful. posterboy by the grace of God,  
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