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

Newbie To Cd


spokethewind

Recommended Posts

spokethewind Newbie

Hello everyone. I'm new here and I'm honestly a bit shocked that I may have this disease. I'm 1/2 Irish and live in the USA, and just started having symptoms in July. Yesterday was my first and hopefully only till I'm 50 colonoscopy, and my doctor took a biopsy of my small intestines and said it looks like I have celiac disease.

I'm really scared. My cafeteria at college is all about bread and cereal, not only that, but I LOVE bread. I read I can make my own bread but does it taste different? And eating out, are there any national chains that anyone knows of that have gluten-free bread?

And my main question, is this a hard disease to live with? :(


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast
I'm really scared. My cafeteria at college is all about bread and cereal, not only that, but I LOVE bread. I read I can make my own bread but does it taste different? And eating out, are there any national chains that anyone knows of that have gluten-free bread?

And my main question, is this a hard disease to live with? :(

<{POST_SNAPBACK}>

It's not hard to live with when you get used to it. It was overwhelming at first and you need to learn alot because products like makeups, shampoos, lotions, soaps,medications and that kind of stuff needs to be changed in addition to food.

Feel free to contact me and I can give you a few lists that would be helpful. My email is in my signature.

Also, the bread does taste a little different but there is alot of good bread you can get.

My favorite 3 are listed below

1.Kinnikinnick donuts and breads

2.Cybros Rice Rolls

3. Foods By George cinnamon english muffins

nettiebeads Apprentice
Hello everyone. I'm new here and I'm honestly a bit shocked that I may have this disease. I'm 1/2 Irish and live in the USA, and just started having symptoms in July. Yesterday was my first and hopefully only till I'm 50 colonoscopy, and my doctor took a biopsy of my small intestines and said it looks like I have celiac disease.

I'm really scared. My cafeteria at college is all about bread and cereal, not only that, but I LOVE bread. I read I can make my own bread but does it taste different? And eating out, are there any national chains that anyone knows of that have gluten-free bread?

And my main question, is this a hard disease to live with? :(

<{POST_SNAPBACK}>

Hi and welcome to the forum. celiac disease is livable - one member wrote about her 80+ female relative who was dx 50 years ago! It takes some getting used to, but check out the threads related to products and restaurants and such. I used to be a major bread eater (warm biscuits dripping with butter and jam mmmm....) and loved to bake cookies and pies before I developed celiac disease nine years ago. You do get used to the dietary change after awhile. For me, bread is now a treat - at over $5 a loaf, I make it last. It is a major adjustment, I'll admit, especially at your age with socializing and such. I hope you weren't much of a beer drinker, because that's off limits too. But for me, I consider the things I gave up as a small inconvenience to feeling better, being more active and the big improvement in my quality of life. After awhile it will be second nature. Come here anytime to ask questions, no matter how silly or trivial you may think they are. There are lots of us and have had so many different experiences and everyone is very helpful and understanding (we have to be, most of the regular population isn't). :)

Guest BellyTimber

Bake your own in tins and a machine.

Dripping with butter & jam ...

:P:P:P:P:P

And your sense of destiny and self worth ...

B);):unsure::rolleyes::o<_<:huh:

tarnalberry Community Regular
Hello everyone. I'm new here and I'm honestly a bit shocked that I may have this disease. I'm 1/2 Irish and live in the USA, and just started having symptoms in July. Yesterday was my first and hopefully only till I'm 50 colonoscopy, and my doctor took a biopsy of my small intestines and said it looks like I have celiac disease.

I'm really scared. My cafeteria at college is all about bread and cereal, not only that, but I LOVE bread. I read I can make my own bread but does it taste different? And eating out, are there any national chains that anyone knows of that have gluten-free bread?

And my main question, is this a hard disease to live with? :(

<{POST_SNAPBACK}>

It's hard to adapt to, but once you learn it, it doesn't have to be hard to live with. A lot of "how hard it is" depends on your attitude towards food, your restriction with food, people (both rude and ignorant). If you don't have a kitchen (or at least *something* to cook on/with, it will be harder, but there are ways around that too.

I prefer to maintain the gluten-free diet by sticking with unprocessed foods that are naturally gluten-free. It means I cook, but it doesn't mean I spend two hours in the kitchen every day! Others make heavier use of specialty products (particularly bread, which I used to love, but don't much have any of these days) and that works for them. Keep reading this site - you'll find a lot of useful information and helpful people to answer your questions.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,140
    • Most Online (within 30 mins)
      7,748

    Staticgypsy
    Newest Member
    Staticgypsy
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.