Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hello All!


JSnyder

Recommended Posts

JSnyder Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

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
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

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

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

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

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



little d Enthusiast
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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,929
    • Most Online (within 30 mins)
      7,748

    Mike Rowicki
    Newest Member
    Mike Rowicki
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.