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

New To This

Anglgrle3

Recommended Posts

Anglgrle3 Rookie
Anglgrle3
Posted

Hi everyone.

I was tested for celiac disease today after having to demand that they find a solution to my prblems. Im 23 (24 in a few weeks) and have had off and on bloody D for 2 1/2 years, major bloating and cramping, and while never tested reactions to milk and creams (butter, cheese, some yogurts dont bother me) i was diagnosed with ulceritive colitis by 3 drs, however all the meds they gave me only made me more sick. it wasnt untill i was so sick that i couldnt eat for a few days that i started to feel better. almost a month ago i had a "flair up", was put in the hospital for a week to rehydrate and control the flair up, however again the only time i started getting better was when i couldnt eat for 3+ days. (starting to think diet may have an influence here) in the last month, for 3 weeks i couldnt stop throwing up or running to the restroom what seems like every few min (got the throwing up under control finally but still feel nausiated), im obviously retaining only the minimal nutirents from the foods i do eat b/c before i can even finish half my plate im running to the bathroom, and i've lost well over 20 lbs at this point and still dropping (i started at 124, so thats ALOT for me. Im bordering 99 and 100 lbs at this point) in the last month i cant seem to get out of this "fuzzy head" thing going on and my sleeping has become very irregular. just wanted to find out if these are some of the same things ya'll have experianced, or if im going crazy over here!

I've been doing as much research as possible and have read many of the posts, im excited to see such a supportive/concerend group!

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi Angel, and welcome to our board. Yes, I believe you've figured it out and have come to the right place. Your story sounds extremely familiar, many others here have had the very same problems..........and the same garbage from doctors.

You sure sound like you have celiac disease. You need to get tested ASAP. But if you're satisfied with just a dietary response (and at this point, it seems to me, you can't really wait around much longer, I don't like what I am reading, you sound very ill), just try the gluten free diet (and dairy free would be a good idea as well).

You probably should be very careful with what you start out eating, because by now your intestines probably can't even digest raw foods any more. I had to cook everything for three months last year, even fruits. Anything raw would send me into agony (and I mean WELL cooked). Some people can tolerate bananas, though (I couldn't). Start with small amounts of food several times a day. Nothing very hot or very cold, well cooked, fairly bland food (salt is fine, but be careful with spices). Soy may not be a good idea, either. Chamomile tea could be soothing (let it cool a little before drinking it).

I hope you will feel better soon!

Smunkeemom Enthusiast
Smunkeemom
Posted

I am sorry you are having such a rough time of it. I hope that you find out soon what is wrong. Remember though, the doctors work for you. If you feel like they aren't 100% trying to help you figure out what's wrong, it's your duty to say something about it.

As far as the yucky feeling, I used to like to drink Pediasure (yeah I know it's for kids, but it tastes better than Ensure). You can get it lactose and gluten free, and if it's really really cold it tastes kinda like a milk shake.

wolfie Enthusiast
wolfie
Posted

Hope that you find some answers soon!! Good for you for standing up and demanding that the drs find what is causing all of your problems. Hang in there!! This is a great place to learn lots of good and important info.

AndreaB Contributor
AndreaB
Posted

Welcome Angel!

From what I've read by other posters....it sounds like gluten is causing your symptoms. If you don't need a dx than try going gluten free and see if that makes you feel better.

Enjoy the community, it's great!

Anglgrle3 Rookie
Anglgrle3
Posted
  • Author

thanks, i know the drs are supposed to work for me and have my intrests in mind, but i have to say i was quickly becoming irate when he didnt listen to anything i said and just kept repeating we need to get you medicated over and over again! AHHH! :angry:

most of my family is in the medical field and while being super supportive of everything (i had to quit my job and move back to my parents b/c i couldnt take care of myself. yeah for great parents! :) ) even they have said medications are making me noticably worse. my biggest concern about changing drs is that this is the 4th dr ive seen and 3 said it was UC/IBS/ "some other cover my ass Dx" (as we like to refer to it around here) the other just blew me off and told me that i couldnt deal with stress. so now my insurance comapny has assigned a case worker to make sure im not a hypocondrac or just mental about it. HELLO i pay my insurance company and the drs, why cant someone see there is a deeper problem! :angry:

Sorry im just venting, the not knowing is honestly the most stressful thing i've delt with! My passion is food, so having to learn all new recipes scares me too. what if i dont like the food anymore? :o

thanks for listening and letting me vent!

Smunkeemom Enthusiast
Smunkeemom
Posted

I get where you are coming from. It's 100% safe to vent around here, we have all been through it.

As far as the food? It's good when you start out, and then when you start feeling better IT ROCKS! I am making some Tinkyada pasta tonight with chicken and alfredo sauce, and I don't know how I lived without Tinkyada pasta before going gluten free, it's so much better than "real pasta" LOL

It's an adventure, you get to make up your own recipes, you get to try things you never thought you would like, and you get to invite your friends over for food they think they are going to "sneek into a napkin" only for them to find out that it's really really good. Then you get to gloat about "see? my food is good and your's sucks"

Okay, I am hyper today, and had some really good gluten free brownies the other day, so pay me no mind.

The food though? It's pretty good, you will like it, and if by some chance you don't, you will figure out how to modify it so that you do, and those victories are priceless. :)

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

Celiac.com Sponsor (A8-M):


Anglgrle3 Rookie
Anglgrle3
Posted
  • Author
I get where you are coming from. It's 100% safe to vent around here, we have all been through it.

As far as the food? It's good when you start out, and then when you start feeling better IT ROCKS! I am making some Tinkyada pasta tonight with chicken and alfredo sauce, and I don't know how I lived without Tinkyada pasta before going gluten free, it's so much better than "real pasta" LOL

It's an adventure, you get to make up your own recipes, you get to try things you never thought you would like, and you get to invite your friends over for food they think they are going to "sneek into a napkin" only for them to find out that it's really really good. Then you get to gloat about "see? my food is good and your's sucks"

Okay, I am hyper today, and had some really good gluten free brownies the other day, so pay me no mind.

The food though? It's pretty good, you will like it, and if by some chance you don't, you will figure out how to modify it so that you do, and those victories are priceless. :)

thanks for being so positve and encouraging!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,561
    • Most Online (within 30 mins)
      7,748
    lamps
    Newest Member
    lamps
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      How long does it take to gain weight?

      By petitojou · Posted

      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      Roommate search

      By ckeyser88 · Posted

      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • 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.