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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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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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