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Overwhelmed...please Help
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4 posts in this topic

Hello everyone! :)

My name is Julie and I'm newly diagnosed. I'm sure this is the same thing that

you "old timers" to celiac hear all the time from "newbies," but I need help! Please send a rescue boat...I'm sinking. My rheumotologist/gastro. dr. have diagnosed me with celiac disease and casien (milk/dairy) sensitivity (after testing).

I'm trying so hard to do good with this diagnosis...but it's so easy to be bad! :huh:

I also have refractory epilepsy and lupus. We are all hoping that this latest diagnosis of Celiac will help ease (or lower) the symptoms related to my other health problems.

I've read that you need to make sure your make-up, soap, basically everything is gluten free also. Do you all do this? Gosh, I've researched epilepsy for ten years, but this is like starting from scratch...I forgot how difficult it was!

Thank you so much for your support! -Julie (newly diagnosed, hungry, and dirty...my soap had oatmeal in it!). :blink::huh:

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Since restricting my diet (gluten, lactose, casien, yeast, corn, soy, peanuts, etc....) most of my joint pain is gone, I now run a fever less than 50% of the time, and all those other problems/issues have really diminshed.

Work on sticking to the diet - it makes such a huge difference, however, it took MONTHS to see some of the results!

-Kate

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Julie: See www.gfcfdiet.com for help with avoiding gluten AND casein. That site lists acceptable and unsafe foods for gluten/casein free diets. Since I must avoid soy and some artificial sweetners (sorbitol/mannitol/xylitol) as well as gluten/casein, I have learned to just read labels, call and/or email food manufacturers to explain mystery terms on their ingredients and use gluten-free/CF lists only as a starting point in my decision to choose a food. I have discovered a large variety of safe foods within those restrictions, so I don't feel deprived at all. :D

I just recently returned from a vacation where I successfully negotiated gluten-free/cf/sf 'safe' meals in 6 different restaurants. Rather than try to explain about celiac disease or food intolerances, I studied their menus and requested entrees with simply grilled meats and steamed vegies. Most restaurants have at least one entree that approximates that or can be prepared without additional (unsafe) sauces or coatings. Then I would explain that I must avoid wheat, dairy and soy and ask that none of those ingredients be used to prepare my entree. Since I was in San Diego, ordering in Mexican restaurants was the easiest ... corn, rice, beans, guacamole, corn tortillas and chips (IF fried in dedicated fryers), meats are all gluten-free/CF. I only had to request they omit the cheese. (I also avoid hot, spicy sauce.)

I know consuming gluten/casein/soy/sorbitol will give me excruciatingly painful symptoms, so PAIN motivates me not to 'cheat'. Besides I would only be cheating myself. I view pain causing ingredients as 'unsafe' and all other foods as 'safe' rather than bad or good foods. If I accidentally consume an unsafe ingredient, I'm not 'bad', just sad that I exposed my poor body to more damage and scared about how long the pain will last this time. :o

Celiac Disease is correlated with many autoimmune diseases, so doing everything you can to avoid gluten/dairy may relieve much of the symptoms associated with epilepsy and lupus. Focus on how much better you will feel without gluten/dairy containing foods, rather than on foods you are giving up. Also focus on the variety of healthy foods you CAN eat. ;)

BURDEE

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Thank you for the replies and info. I am just trying to adjust. Figure out what is o.k. and what is not...typical stuff you go through with a new diagnosis. I have a hard time eating anyway (in part due to all of the meds. I take)...It would be worth any hassle though if I could FEEL BETTER! :D -So now I am just struggling to understand how to begin. Thanks for your feedback! -Julie

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    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
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