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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 FREE Celiac.com 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 Celiac.com Store.

How Do You Check For Gluten?
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8 posts in this topic

I've been gluten-free for 8 months, and consider myself to now be extremely well informed about this disease. So why is it that my antibodies have not even dropped at all in all these months? I have gained almost 20 lbs., so it can't be Refractory Sprue, and have recently had another endoscopy and a colonoscopy to rule out secondary problems (I don't have the results yet.) So, the question becomes, where and how am I getting gluten?! I must be, according to my blood work, and I swear I don't know where! How does one check for gluten? I'll tell you my method: I buy only a few pre-packaged foods, and the rest is fresh. I look at the labels for anything that sounds suspicious, although admittedly I'm not all that familiar with every single forbidden ingredient. 90% of the time, whether it looks suspicious or not, I call manufacturers to ask about gluten, even on such things as salt, pepper, and sugar. Am I doing this right? Is there a way to check for gluten that I am missing? What should the guidelines be in checking out our foods? Clearly there's somethign I'm not doing.

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Hi Gillian,

What are the few pre-packaged items you buy? Sometimes the item is gluten-free by ingredients, but there is cross-contamination on the lines. You may be very sensitive to it. If you make a list of those products maybe we can all share our own personal experience with those products or companies. It couldn't hurt and we may just get to the bottom of it.

Another question is do you eat out or live with non-celiac people? You may be getting contaminated that way. It is really hard to tell sometimes, especially since you haven't gotten relief from symptoms yet.

I am praying your biopsy shows that your villi are healing.

God bless,

Mariann

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These are the foods I eat right now that are not completely fresh foods:

Smucker's Peanut Butter

Trader Joe's Raspberry Jam

Ballpark 100% Beef Hot Dogs

Mother's Rice Cakes

Trader Joe's Applesauce

Pocono Brand Buckwheat and Kasha

A1 steak sauce, Heinz ketchup, salt, pepper, sugar,

Mountain Dew or Sprite

and various meds which I have double checked. I don't know what here is causing the problem but something must be. I'll find out on May 3 if at least my villi have healed.

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What about things like gum, mints, toothpaste, mouthwash, lipstick, floss...?

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Are monodiglyeride(?) bad? They are on the forbidden list but I did a search for them are and the company states there are no derivitives. Anyone know?

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Envelopes, stamps, communion wafers? (Just to be thorough!)

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monodiglyercides are an ingredient to be aware of. My understanding is that if it is made in the us is most likely gluten free. Espeically in it's liquid form. In the powdered form, such as in coffee creamer or something like that there is a possibility, but again unlikely if US product. For me, it was something I doubled checked through the company, but if they say it is fine, I bet that it is. If you need I can probably track down my info on it. I think I had found a site that talked about the questionable items such as...this one, and then explained why it was an ingredient to be consious of.

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My toothpaste is mentadent, and they told me it is gluten-free. It could be the floss and/or lipstick, because I haven't checked either of those. Could that tiny amount really keep my antibodies so high, though? That's hard to believe!

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    • Confused
      Your doctor is woefully mis-informed.  First of all you did get a positive on both (barely on the TTG IGA).  That does not mean you should be referred to a dietician.  You should be referred to a GI to run either the full celiac blood panel (your GP can not order it at Kaiser) and schedule you for an endoscopy to obtain four to six biopsies to confirm celiac disease which is the GOLD standard level of care. Read the research here: http://www.cureceliacdisease.org/screening/ Ask your doctor for a GI referral.  Show them the print out out from the University of Chicago.  Be nice, but they'll do it.   Also, did your GP run a IGA deficiency test?  Do you have those results?   Best to email your doctor.  Reqest a GI referral.  Once it is in writing, your doctor has to act.  Let him know that what is required for a proper diagnosis per leading celiac research centers and the American GI Association. http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/ DO NOT GO GLUTEN FREE UNTIL ALL TESTING IS DONE!  This is so critical.  Otherwise the tests will be invalid.  Then you'll be in diagnostic limboland!   After your GI consult, you can ask to be tested for vitamin and mineral levels.  Spend time learning about celiac disease and the gluten diet.  Learn about cross contamination and hidden sources of gluten. Again, DO NOT GO GLUTEN FREE YET!  You can do anything you like, of course, but get the facts first!     
    • Could this possibly be related to celiac or a gluten intolerance?
      I too have more neuro than gastro symptoms...its so weird. I hope we both find answers soon!
    • Silent Celiac or Non-digestive symptoms
      My celiac diagnosis started with me seeking medical attention for an ongoing migraine problem. This lead to MRI's that showed white spots on my brain which lead to blood work that showed a positive ANA (1:640) and a trip to the rheumatologist. The rheumatologist suggested the biopsy and a referral to a GI specialist after he felt confident that I didn't have lupus. The funny thing is that I don't have severe tummy troubles. I have some bloating occasionally and gas along with differing bowel patterns but that's about it. The most annoying and troublesome symptoms for me are migraines, fatigue and sometimes I get a little achy. My results for the prometheus test were high, blood anti-bodies were present and my biopsy revealed Grade B2 villi damage (the worst classification according to Corazza, Roberts, Ensari). Anyway I guess what I am wondering is how long after being "glutened" will I have a migraine, vitamin deficiency or other neurological symptom so that I will know that I am in trouble? I feel like if I had the tummy trouble to go with this I would know when I have eaten something that has been cross-contaminated. I just want to heal soon and not risk further intestinal damage or lymphoma. Thanks for your reply!
    • ANA and Celiac
      Does anyone know if the positive ANA(1:640) I had back in January could be connected to my celiac diagnosis two weeks ago? Does ANA change with celiac or just other AI issues? Thanks!
    • Confused
      Hello,  I'm new to the forum and new to gluten/celiac. I had some abdominal discomfort a couple weeks ago and my doctor (Kaiser) at the last second said he'd also test my blood for gluten issues. Bottom line, last Sunday night i get the results which I didn't quite understand. TISSUE TRANSGLUTAMINASE IgG 1.06 Index <=0.90 Index Tissue transglutaminase IgA 0.91 Index <=0.90 Index Then i get an email from him saying you tested celiac positive, I'm referring you to a dietitian for a gluten free lifestyle (head exploded). After scouring the internet for days, I've read my fair share of good and bad celiac articles. Right now it seems like kaiser just wants me to go gluten-free which is fine if I have celiac disease, but I'm not sure what the numbers indicate or how bad they are, or how much potential damage has been done. Has anyone gone through a similar process? Do I need to ask for further tests?  I'm still in shock a bit I guess but really feel like I'm in the dark and reading everying on WebMD and other celiac sites gives me hope and crushes my dreams at the same time. By the way I'm 35 and male, if that matters.   Thanks
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