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Need Reassurance
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9 posts in this topic

I just need some reassurance that the anxieties related with wheat/gluten will go away in time. I've had a rough week and just need some good vibes!

Bambam

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Hang in there. Are you having anxiety just from not being sure of what to eat?? Do you have stress somewhere else in your life right now? I guess I am not sure what you mean by anxiety.....

My great grandma always says "this too shall pass". Keep your chin up.

-Jessica :rolleyes:

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I should have been a little clearer - but I guess I am just having anxieties related to always having to check everything I eat and people not understanding and stuff like that. Thanks for asking.

Bambam

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Well I can't say that you will ever have to stop reading labels. I also can't say that people will ALWAYS get it. But you will become more accustom to reading labels and more used to putting up with "stupid" people!! ha :lol:

Here soon you will learn to rattle off a speech to them so that they can become educated on Celiac. You won't even think twice when they don't get it. Just HELP them "get it". I find that easier than expecting them to do it on their own.

Label reading is tricky. I find it best to call the companies myself. That way I am for sure if a product is safe for me. Someone on the board may say that they called and it is safe. I will then go ahead and call on my own just to verify for my own info. I feel safer that way. (maybe obsessive, but hey it's my health ;) )

It gets easier with time.

-Jessica :rolleyes:

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Hang in there. Are you having anxiety just from not being sure of what to eat?? Do you have stress somewhere else in your life right now? I guess I am not sure what you mean by anxiety.....

My great grandma always says "this too shall pass". Keep your chin up.

-Jessica :rolleyes:

My mom always says that to me, too! :lol: "This too shall pass."

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As far as dealing with idiots there just isn't much we can do. You can lead people to knowledge but you can't make them learn anything. :lol: You just have to hold your ground, it is YOUR body and it is YOUR responsibility to take care of it. If they don't like it then that is THEIR problem NOT YOUR problem.

How long have you been gluten-free? You didn't say in your posting.

In time learning what you can and cannot eat just becomes a habit. As your body heals you will feel better and you will readily embrace the gluten-free lifestyle. I have lost so much and basically wasted the first 36 years of my life because of this disease. To dwell on the past just isn't going to make this go away. My life is so much better now and there is so much to look forward to because I am finally healthy.

It does get better and remember we are only a few mouse clicks away.

Ianm

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We all need reassurance. That's one of the good things about this board. We've all gone through our own hell and we can all relate.

Hang in there. Things will get better. We just have to learn exactly what our bodies can tolerate. If people don't get it...it's their problem. I just got off the phone with my brother and he said "your number one priority is to yourself". He said to "do whatever you need to get better and don't worry about explaining to others". I guess that's it in a nutshell. It seems so simple when others put it into words...... and yet we get all bent out of shape if we have to explain ourselves to anyone!

Take care of yourself,

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I felt really good tonight, I walked into my favorite Denny's restaurant and I realized that most of the waitresses recognized me as having a gluten intolerance. They don't quite remember the term gluten or celiac but my server teased me and said "when you walk in the door we know that we have to clean the grill and get out the clean utensils." As she took my order she asked if I wanted toast and immediately slapped herself in the face and said she was sorry because she realized what she had done. This really made me feel much better because people are starting to get it, even if it is one small step at a time. My sister-in-law is starting to understand and even thinks that she wants to get tested because she has a lot of the symptoms and she read an article about osteoporosis and recommendations that people with this disease should be screened for celiac. My grown children are listening and asking questions because they know how sick I was and seemed to be impressed with the progress I have made. My son said he didn't realize that we could go in a restaurant and tell them how to prepare our food. Denny's have bent over backwards for me, they read labels and let me know

what ingredients they have. Please don't get discouraged, things will get better for us. Just think of yourself as a pioneer helping others to "map out a workable plan "

for others to follow. I figure that there is a reason why I have this and I try to focus on the positives!

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I have to travel a lot for work and every Denny's I have eaten at has made an effort to accomodate me. They at least allow me to substitute any bread with something else. Have never had a problem with anything I've eaten at Denny's.

Ianm

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    • First, do you have celiac disease?  I assume you do.  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 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 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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