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JSnyder

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JSnyder Newbie
JSnyder
Posted

Hi everyone!

I am new to this site and new to celiac disease. I have not been formally diagnosed yet, but the gluten-free diet has made a huge difference in my stomach pain. I feel that I do have celiac disease, but I am a little tired of invasive procedures for the moment!! I just thought I would post here and introduce myself. I am excited to talk to people who can give me feedback on symptoms and on the day to day living as a celiac.

Jillian

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CarlaB Enthusiast
CarlaB
Posted

Welcome!

You will find a lot of useful information here!

If you want to be officially diagnosed, you need to be eating gluten. I don't know how long you've been gluten-free, but you need to be eating gluten for months before the testing.

Of course, you don't need a doctor's permission to be gluten-free!

larry mac Enthusiast
larry mac
Posted
If you want to be officially diagnosed, you need to be eating gluten. I don't know how long you've been gluten-free, but you need to be eating gluten for months before the testing.....

Welcome Jillian,

CarlaB is right. I'm so glad I had all the right tests and got the definitive diagnosis before going gluten-free. It would really suck to purposely make myself sick in order to induce the intestinal damage needed for the celiac testing. Do it right, get it over with forever.

best regards, lm

Guest lorlyn
Guest lorlyn
Posted

Hi Jillian,

Just wanted tosay hi :rolleyes: You will learn alot reading in this forum they have so much information that it would have taken years to learn on my own. My daughter was officially diagnoised on 11/06 and my husband did not get tested but we are pretty sure he has Celiac Disease. We had never heard of Celiac, gluten free foods untill our daughter got sick and luckily her Doctor diagnoised her with in days so we think she only had a little damage and seems to be doing great. Her energy has came back and really enjoys playing soccer again. Just hang in there because one day it will get to be second nature.

wethree Newbie
wethree
Posted

Of all the message boards out there, this is THE ONE you should stay with. There are a lot of very smart people hanging out here. There will be times when discussions get intense and way off the point, but if you don't like that, you just don't have to get involved, however, those can be interesting too at times.

I have gotten some really good information over time........as for doctors just be aware that some of them do not know squat about celiac disease and the tests can come back negative when you really do have celiac disease, but they are not aware of this. Because there are no pills to conquer this disease, some doctors are not really well versed on the subject of celiac disease and gluten intolerance. You can get diagnosed at any age, my 88 year old mom just got a positive diagnosis after getting a negative one a year ago. She has had it for many years, I would imagine. I got diagnosed four years ago and my 8 year old granddaughter got diagnosed at one year old. I carry the gene.

Best wishes to you as you go on your gluten free journey.........

happygirl Collaborator
happygirl
Posted

Jillian:

Just wanted to add my voice to the welcomes you are receiving!

Lots of people on this board don't have an official diagnosis, for various reasons. We really don't discriminate here..... the main thing is that we all are eating gluten free, and all the joys that go with it! :)

I hope you stick around, and read a lot. Ask questions, and make yourself at home. Let us know what we can do to help!

Best of luck,

Laura

  • 2 months later...
Momma Bird Newbie
Momma Bird
Posted

I wasn't officially diagnosed. After years of fighting with doctors and not getting any answers, I researched it myself. I always had it in the back of my mind that I might have celiac disease. Sometimes you just have to trust your bodies signals, and the brain god gave you. I had all the symptoms, and after going gluten free for only four days, I feel amazing. I was about to lose my job too. They thought I was crazy - always going to the doctor, always feeling so sick and weak that I often had to leave early, or not come in at all. As hard as the diet may be, I know its a blessing in disguise. Im eating all the foods I should be eating anyway. My husband says my eyes even look different, probably because im not in pain like I was. This site is wonderful. I have been recieving emails for a few years, and kept brushing them off. Its hard to get out of the habit of thinking that doctors must know everything, and maybe it all was in my head. Thank you a million times to everyone here. I have learned so much. Im going to disney world next week, and because of this site, I've learned that its one of the most celiac friendly places on earth. You guys rock

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little d Enthusiast
little d
Posted
Hi everyone!

I am new to this site and new to celiac disease. I have not been formally diagnosed yet, but the gluten-free diet has made a huge difference in my stomach pain. I feel that I do have celiac disease, but I am a little tired of invasive procedures for the moment!! I just thought I would post here and introduce myself. I am excited to talk to people who can give me feedback on symptoms and on the day to day living as a celiac.

Jillian

Welcome Jsnyder, Carla is very correct. I was on the diet last year about this time for about 3 months you would think that 3 months would not make a differance but in my case it did. If I had come on this site which I think that I did one or two maybe three times I was a lurker for a while until I decided to join, but anyway and read all the post and advice about testing and all then I would have stuck to regular food. After all my testing Endo, colonscope, blood work and Pill cam all negative, Put postive results with the diet, I think that I was tring to show my doctor that he was wrong and stupid but I only hurt myself I even was eating gluten for the Pillcam I had all symptoms return by the time i had the pillcam done 7months later after the first round of test. And it has been harder for me to get motivated with my diet to feel better, I need to quit being a yoyo and stick to my diet, So anyway get tested quick before anymore time goes by. Hope that your are learning plenty I know that I am

donna

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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