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Need To Train My Brain
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Today they had a pot luck at work. I was very good about avoiding cakes, cookies, bread, etc. but for some stupid reason I grabbed macaroni salad. I must have associated it with potato salad I guess. Well I took a bite and suddenly realized what I did. :o I immediately spit it out into my napkin, of course in front of everyone. Now I am embarrassed for spitting out my food, LOL Everyone was really nice about it since they know how sick I have been but still, not quite a lady like move!!

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You poor thing, I am sure they understand. I have almost licked a spoon or something silly like that and have caught myself before doing so. :o I also have had dreams where I eat gluten and then spit it out as you described :lol:

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I did stuff like that towards the beginning. At school, for example, they always provide some sort of snack...in the beginning I found myself gravitating towards it, then remembering that I couldn't and stopping. In addition, I made the careless mistake of picking up a wrong box of cereal while on vacation earlier in the year......etc. I realized half-way through a handful of cornflakes that it wasn't the gluten-free kind, so, like you did, I spit it out. If your friends/co-workers understand, it shouldn't be a problem...this is a health thing...better you spit it out than keep eating it or swallow another bite....you made the right decision :)

-celiac3270

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I have an anniversary party to go to tomorrow where there will be tons of food. I am bringing mexican cheese dip and tortilla chips but when I asked if I could bring my own dinner the answer was no. So, I will eat heartily at lunch and hide a tuna & rice cake sandwich in my car that I can sneak out and eat. But, I can see me doing the same thing tomorrow that you did at work! Eating and then realizing and spitting it out. We're only human, after all! I'm going to try to fake eating so I won't hurt their feelings but no matter what, I don't feel I can trust the food to be gluten free or not cross-contaminated.

Terri

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I have an anniversary party to go to tomorrow where there will be tons of food. I am bringing mexican cheese dip and tortilla chips but when I asked if I could bring my own dinner the answer was no. So, I will eat heartily at lunch and hide a tuna & rice cake sandwich in my car that I can sneak out and eat. But, I can see me doing the same thing tomorrow that you did at work! Eating and then realizing and spitting it out. We're only human, after all! I'm going to try to fake eating so I won't hurt their feelings but no matter what, I don't feel I can trust the food to be gluten free or not cross-contaminated.

Terri

I think that it's kind of sad how unhelpful/unaccomodating people can be....I mean, not only food manufacturers, but it's kind of sad that you can't even bring your own food there when you have an autoimmune system disorder that doesn't allow you to eat any of that stuff :angry: !

-celiac3270

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Hi,

I see where others are having a hard time at social gatherings, too. How sad for us. It seems every weekend is something, and another food challenge.

Father's Day was bad for me, I made a mistake, probably cross contamination. Tomorrow is a picnic. I will get to eat fruit that I'm taking, and a hamburger patty. And watch everyone else eat goodies! Sunday is my family reunion, at another park. More of the same! It becomes depressing for me still. I've only been at this for just under a month. I'm getting to where I almost hate to go! :(

j9n,

Even if it was potato salad, it would've had mayo in it, that's not gluten-free. For picnics, now the family (or I) leave out a couple of servings and I add my own gluten-free mayo.

Nita

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Hi,I'm new here.Iwas diagnosed yesterday.This IS going to be hard isn't it?I live in the south and I guess you have heard about "southern home cooking".I haven't even BEGUN to realize what I can and can't have.I'm going to need lots of help.I went through 4 years of diagnosis for various things.Seems like an awful lot of time has been wasted.You all have my sympathy,especially if you feel as crappy as I do.

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Hi,

It is rather difficult. First thing you should do is go to the site index on this board and find the fobidden ingredients list. You're going to be reading a lot of labels. In addition, anything containing natural or artificial flavorings is questionable; those companies need to be called (that means that pretty much everything that doesn't say gluten-free on the package needs to be called.....it's a lot of work.

-celiac3270

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I am finding tht alot of processed foods have something bad in it. I poured salad dressing on my salad then read the label! Ok throw that out. I am generally pretty good about avoid processed foods anyway but they seem to sneak glutin in unexpected places!

I guess for now just stay simple and homemade. Meats, veggies, rice, potatos. I did buy some spagetti squash so I am going to try it instead of pasta and I have been looking for an excuse to buy a meat grinder for my kitchen aid mixer (homemade sausage!)

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Southern home cooking. Yep, rolled in flour, then deep-fried! I have a family reunion on the fourth to attend. I didn't ask, I told them all I would bring my own food. One of my sisters expects cakes baked for each person so we can celebrate all of the birthdays at once. HAH!! If she wants 'em, SHE can bake 'em! I will bake and freeze my cake, and everyone is welcome to have some! My sister-in-law was mad because I won't even eat the meat her brother is bringing. I see too many labels that say there is a solution added, but no one knows what it is. The only way I will be able to get through the weekend will be to make intolerant people angry. My health is more important to me than their attitudes.

Terri, Eat heartily at lunch, take something you can eat for your "dish to pass", and have something in the car just in case. I don't think people should be so intolerant of celiac disease. Do your best to handle it. I will be thinking of you, and sending prayers for you to be able to cope!

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Thanks for all the encouragement. This board is my lifeline. celiac3270, I want you to know that I am eating crow! The people called me Friday night to ask what kind of mayo and catsup I could eat and then when I got there, showed me that they had deep fried a turkey and made a dip of real cream cheese and fresh chives and served it with fresh veggies, they made a broccoli and cauliflower salad with Hellmans. She took me around and showed me what I could eat. And she also made a salad with homemade dressing which she checked with me on! Now, there was tons of other foods but I stayed away from them. She went so far as to put the breads at the other end of the table from my gluten-free food! I was in shock! Needless to say, I had a wonderful time and didn't get sick! In fact, I gained a pound!!! So, just wanted to share a positive experience and kind of restore our faith in the non-gluten-free public.

Terri

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Wow that is awesome! I am glad you had a great time.

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That is terriffic :) ....I, too, am glad that you enjoyed it.

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Terri, I am so glad they did that for you! It is just awesome to learn that someone will do that for someone else!

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I have to share our recent experiences with you guys. Saturday my good friend had a party for her son, and I brought gluten-free treats for my daughter and I, enough to share, in fact, as always. Well, I need not have bothered, as my wonderful friend had BAKED gluten-free blueberry muffins and also had gluten-free cookies and ice cream for us! I nearly cried! She said she wouldn't dream of inviting someone into her home and not having food they could eat! She was an immunologist before she stayed home to raise a family--she is also allergic to processed tomatoes, of all things, so she is sensitive to food issues. She is a treasure! On the other hand, my daughter's best friend had a party, only six kids, to celebrate their fifth-grade graduation, and her mom had NOTHING , not one thing Anna could eat...and these girls practically live at each others' houses. I don't expect anyone to accomidate our diets under normal circumstances, but I wouldn't call best friends a normal circumstance. I did bring a gluten-free pizza, which some of the other kids also enjoyed. The thing that really made me mad was the mom had a punch that Anna couldn't drink, and root beer that was gluten-free, but she didn't want Anna to have the root beer at first because it was for ice cream floats (which were NOT gluten-free!) I did have juice for her, but the mom gave in and "let" her have the soda! Not very best-friendly, huh? And Anna always brings enough gluten-free stuff over there to share with her friend, and I've discussed the situation at length with the mom. But I guess it takes all kinds!

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Every July 4 we block off our street and have a block party along with the huge potluck. I was really depressed about this the first year but I took some good stuff and a few very understanding neighbors talked to me and made something gluten-free. In addition, there's one other neighbor who eats gluten-free because she's gluten intolerant.

Now I use this block party as an excuse to go all out and make stuff I don't usually. I buy three pork butts, put dry rub on, and smoke them the day before, which takes at least 12 hours. I make two kinds of homemade BBQ sauce. People now look for the pulled pork and they always wipe it out. The deviled eggs have fresh dill and sometimes sun-dried tomato and smoked salmon. We also make either slaw or potato salad. Sometimes I make a gluten-free dessert but I wasn't a big dessert person even before celiac disease. Sometimes I also grill some marinated vegetables. It's a lot of work but I actually look forward to it.

One note on the meats with flavors or solutions. I've talked to the USDA and so have others, and we've all gottent the same answer. If wheat or barley is a part of "flavors" or solutions in raw, fresh meats, the wheat or barley must be clearly listed because it adds nutritional value.

Here's a web page along with an 800 number and an e-mail contact.

http://www.fsis.usda.gov/OA/FAQ/flavorings.htm

richard

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I've always loved to cook but never could bake. I've found that I've had to make only a few modifications on my cooking. Sure, there are some recipes I chucked (for example all those Bisquick easy ones) but for the most part I've always made most things from scratch which works well for us. Now, though, I am going to learn to bake because I WILL have my cookies with the cherries and nuts on them at Christmas! I've got 6 months to prepare!. For me the hardest part of being gluten free is social. Dining out is a chore. Every bite I take I wonder if it will "get me". Guess I'll get over that with time.... Just remember things could be so much worse! At least we don't have to inject ourselves with insulin or monitor our blood sugar or go for dialysis or even worse, take chemotherapy. At least we're not in a wheelchair with no control over our muscles or so many other things that could be wrong. I think we're so lucky to have something that can be controlled by diet.

Just my thoughts,

Terri

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Thank you, Richard! I didn't even know there was a number I could call about that! I bet your block party is a blast!

We are fortunate, in that we can take of ourselves just by watching what we eat. Compared to the treatments for other problems, ours is relatively easy and cheap. I know the food costs more, but not as much as some medications!

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Terri,

That is totally wonderful! How nice for someone to think and plan for you! I'm glad you had a good time!

And Dana, lucky you, also! I'm glad YOUR friend was so thoughtful. Too bad your daughter's friend's mother wasn't more considerate! Shame, for her even thinking your daughter couldn't have the root beer!

My daughters have gotten pretty good about trying to see that there will be stuff for me to eat. Others just expect me to fix what I can eat, and take it to a barbecue. Sat. at a picninc, I just ate a hamburger patty, fruit, and a few chips! Of course, I didn't starve! At my family reunion, where I could take heated food, I had brought beans and wienies, fruit, and had some ham.

I agree, the social part is the hardest! Next weekend is a family barbecue again, for the holiday. I'm sure I will have to take stuff I can eat, or won't have many choices! :rolleyes:

Nita

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So, Richard, where is your block and what time do you want us all there? :lol::lol:

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Dana,

I thought your two contrasting stories were very interesting, and very familiar. Thanks for sharing them. I think the depth of people's sensitivities to others' dietary needs have a lot to do with both the kind of people they are, deep down, and also their own experiences (for example, it's probably no coincidence that your friend who has an allergy of her own is sensitive to what you & your daughter can and can't eat).

I have to admit that prior to my own diagnosis, while I was considerate of my father-in-law's stringent low-fat requirements for his heart disease, I regularly brought desserts to my in-laws filled with nuts despite one sister-in-law being allergic to them. Even though I don't see her all that often, I should've remembered. So I try not to hold it against others too much, but as you said, when it's people who know you really well and spend a lot of time with you, you do kind of expect a little bit of heightened awareness.

It reminds me of very good friends of ours, who continually invite me and my kids to join them for pizza they are ordering in (at least probably 10 times since I've been diagnosed!) and when I say, well that's fine for the kids but I'll have to find something else since I can't have pizza, they always say -- oh, right, we forgot. On the other hand, I have a close friend who invites us over often for completely gluten-free meals prepared from scratch, and she goes to a great deal of trouble to make them really good and really safe for me.

My condition has made me try to be more attuned to what other people are dealing with in their own lives, and to try and understand them whenever I can, so maybe that's the silver lining. In the meantime, we all just have to appreciate kindness wherever we find it...

Zippyten

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Well Pegster, if you can get to Roanoke, Va.....

richard

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Training your brain is a great way to put it! I'm a stay at home dad and I take care of my little girls, and they are always trying to feed my a cookie or put a fruit loop in my mouth. It's great that they want to share and I'm so used to just humoring them that now I have to catch myself each time and say, "Oops, nope, can't eat that!" Eventually I will get more used to it I'm sure but it's still so new to me that my brain hasn't quite adjusted yet. :huh:

On the other hand I'm dreaming at night about cooking gluten-free foods now so maybe it's starting to sink in... ;)

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Hang in there bratcat, it IS overwhelming at first, but trust me, this message board really helps. I was diagnosed in May of this year, and after a week of tears, decided that ok...this WAS what I needed to do. Thank God, I have a wonderful family and friends that are helping me through this. Even my 11 year old son will read a label, and if he finds something in it, he tells me I can't have it!!

Still, I think not a day goes by that I don't read something in one of my books, or on the web that is teaching me what I can/can't eat.

As far as going places...I make my own flatbreads, hamburger rolls, and dressings, and if I'm going to a picnic, I just bring them. We've even had "deli day" at work, and I've brought my own bread and mayo and TOLD them to make my sandwich on my bread! They did it without question.

The key is learn all you can, realize that there will be mistakes on occaision, but given time, you will know what they are. And don't be afraid to stand up for yourself and your health. Stop worrying about what other people will think if you ask for a reasonable accommodation....

Good luck, and we are here if you need us

Eileen

gluten-free since 5/10/04 B)

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Training your brain is a great way to put it! I'm a stay at home dad and I take care of my little girls, and they are always trying to feed my a cookie or put a fruit loop in my mouth. It's great that they want to share and I'm so used to just humoring them that now I have to catch myself each time and say, "Oops, nope, can't eat that!" Eventually I will get more used to it I'm sure but it's still so new to me that my brain hasn't quite adjusted yet. 

On the other hand I'm dreaming at night about cooking gluten-free foods now so maybe it's starting to sink in... 

Oooh...that must be difficult....it's easy enough to make mistakes on your own without having someone handing you foods :) ....it does take awhile to get used to....at first you'll read every label 2 or 3 times to make sure you didn't misread it, and then, eventually, you'll know exactly what you can and can't have...and you will only have to read labels for prodcucts that are new to you. In addition, in the beginning I would automatically move towards food....now I immediately know that something's not good so I don't go near it. Eating seems to be somewhat automatic: people graviate towards food or eat whatever is there without thinking about it. With celiac disease you just need to make eating a manual thing where you consciously think of what you can eat...and then eventually you will automatically stay away from foods that you know contain gluten.....my apologies for a long-winded piece on eating.....it may, by this point, have no relevance to catfish's post and I don't know if this will make sense to anyone else....... :( By the way, I never had those dreams (but have heard of others who have had them), but it seems like you're making things like eating and cooking something you think about, rather than, as I mentioned before, semi-automatic operations. I hope this makes sense...... :unsure:

-celiac3270

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    • 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:
      1 activated vitamin b12 daily
      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
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      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?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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