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How Do You Check For Gluten?
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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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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
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      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
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