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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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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    • Hello and welcome First, sorry to hear you're not feeling well. Myself and many others here can empathise and I know how desperate you will be to simply feel well. You may need to delay that just a little bit longer however: Maybe? It's impossible to answer because the test is looking for antibodies created by the immune system and different people's immune systems react differently. You may test positive as Jen says and go on to the next stage, because an endoscopy is the usual last part of the process, or you may test negative and be left wondering if you'd only stayed eating gluten longer would it be different. Doctors like to try to play it safe which is why they insist on a gluten challenge period where you are definitely having gluten each day.  It gets more confusing. You may be like me, finding all these symptoms that seem to relate to consuming gluten but then testing negative for celiac. This could mean Non Celiac Gluten Sensitivity (NCGS) for which there is no test or it could mean you needed a longer challenge. I did 6 weeks and couldnt face any longer, sometimes I wonder if I'd done 8 would I have got a different result? Although I had been strictly gluten free before then so perhaps not a good comparison.  I think you need to use this time to push for an answer and know that once testing is over, whatever the results, you can give the gluten free diet a proper try. You do have the option of speaking to your doctor and asking for an earlier test, but you may have to pay for that and if its negative you may want to stay on gluten to complete the challenge period for a more definitive answer. Best of luck!   
    • I suspect that there is no "right" answer for you.  If the lab work comes out negative, I don't think you can say with 100% certainty that it isn't a false negative. If it's positive, you can keep eating gluten and pursue endoscopy. But, if it's negative, I think there's still a chance that it's a false negative. You can continue with a gluten challenge (the equivalent of 1 piece of bread per day) and get retested in the future. Good luck!  
    • With celiac you can't ingest gluten at all, ever, not even a smidge. It can take months to get better once you go completely gluten free. And it can take months to recover from accidental gluten ingestion. So you probably haven't started recovering yet. Going gluten free is not easy for many people so you're not alone in this.
    • What type of test did you use?
    • Ever since being diagnosed almost 3 mo. ago I'm getting increased joint pain/tingling.   And I've also starting getting (on some days) pains in my eye, sore throats, and pain areas on my neck to the touch.  I will admit I've found out what I put in my mouth did contain gluten on 'some' occasions over the last 3 mo. after being diagnosed.  But I'm hardly eating any gluten compared to what I was eating over 3 mo ago.   But my joint issues, sore throat, and new skin pain areas have significantly increased or just started since my diagnosis.   I had some wrist pain prior to diagnosis and sometimes tingling in my finger tip and tip of my thumb.   I've had two EMG tests and they said it didn't show carpal tunnel.   The only other test would be ultrasound for detecting carpal tunnel.   I said forget it.   I think my issues are related to being celiac.  It seems the medical profession leaves it up to patients to figure out their own what diet and vitamin supplements that should/should not be taking after being diagnosed.   Since I don't know if it's stress, vitamin/mineral deficiency, nerve related I have taken it upon myself to call my primary and request a vitamin and mineral deficiency test.    I was taking a Centrum Men's multivitamin (gluten free) after diagnosis since I was concerned about getting enough vitamins on gluten free diet.   My primary said to stop taking the multivitamin for two weeks and then have my vitamin and mineral blood test taken.   Two weeks seems like too long of a time just to flush out the multivitamins.   Especially if I am deficient.  But that's what I'm doing. I was wondering if anyone has had increased joint pain/tingling, increased sore throats, and skin pain areas to the touch, AFTER being on a gluten diet.  And were you able to find out the cause, and what helped with these issues.
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