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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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      how much gluten do I need to eat before blood tests?

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    • catnapt
      how much gluten do I need to eat before blood tests?

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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