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

Learning About It For The First Time


J-Man

Recommended Posts

Canadian Karen Community Regular

Just wanted to note that on the link that I provided for you, there seems to be some inaccurate information as far as I am concerned regarding children with celiac disease. I read something in there about some children being able to tolerate gluten after "5 years" off gluten, or something along those lines......WRONG!!!!!! Once a celiac, always a celiac..... I will look for a better link for you now........

Karen


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



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

Here's one:

Open Original Shared Link

Karen

Canadian Karen Community Regular

If you read through these posts, you will definitely see a trend!!!! :P:D

Open Original Shared Link

Karen

J-Man Newbie
Well you better be careful because you will have the single women with Celiac after you, lol!!!

<{POST_SNAPBACK}>

*smirk* I should be so lucky ;-)

J

Canadian Karen Community Regular

Here is a very good one:

Open Original Shared Link

Karen

kbtoyssni Contributor

You should read Dangerous Grains if you want to know all about the disease. They talk about the ethnicities that are most likely to have celiac disease in it. Grains were first grown in the middle eastern countries. Since celiac disease is genetic, those cultures have had longer for the celiac disease genes to be eliminated from the gene pool.

I'm a celiac disease newbie (dx a month ago) and I figured it out after being diagnosed with fibromyalgia. I tried an elimination diet to see if any foods aggrevated the FM and found that wheat made me so, so sick. And so did barley. I did get the blood test done and it was covered by insurance. Unfortunately you have to be eating gluten to test positive and I'd only been eating it for 4 or 5 days so it was negative. But I don't care. I know if I eat gluten I'll be on the floor with stomach cramps too tired to get up and this will last for three days. My FM symptoms get much worse, too.

PS It's really great that you are so open to learning about the disease. That girl doesn't know what she's missing

Carriefaith Enthusiast
I just met a girl with Celiac, and I want to do whatever I can to make her happy.
That is very sweet :) If you are cooking for her, there are a few things that you should know (someone may have mentioned this already). In addition, to making sure the food is gluten-free, make sure that you clean all counters, dishes, silverwear, pots and pans very well. I find crumbs on stuff like that all the time. Also, make sure that you use separate condiment jars, deep fryers, toasters, ect.

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



Celiac.com Sponsor (A8-M):



Nantzie Collaborator

I've got to throw my two cents in here. I'm still waiting for my test results, so I'm not sure if I have celiac yet or not, but I have been dealing with digestive issues since I was a teenager.

When it comes to people in your life, be they friends, family or significant others, the most important thing is when you get sick, just to have someone to talk to who takes it seriously, knows you're not a drama queen, and will cheer you up, or bring you something from the store, offer to stop by with a movie to watch or just call and see how you're doing, or understand when you just want to be alone in your misery, but not hold it against you when it's over.

When you get sick from something like this, it can be humiliating. Having friends who are understanding is a real treasure. Because there are people who tell you it's all in your head, or act like you're somehow at fault.

You know how they say that everyone has different kinds of friends? You've got the friends that you can hang out with, but not really talk to about something serious. Then there are the friends who you can talk to, but when the chips are down they aren't really going to do anything to help. And then there are the friends who will drop whatever they're doing to help when you need it.

Well, when you have digestive issues, or any kind of chronic condition, there's an even closer circle of friends; those you can call when you're sick. Most people aren't tough enough.

If you can just be her friend and be understanding of her life, even if you never have a romantic relationship, I'm sure she'd count herself lucky to have you in her life.

And like I tell my single guy friends -- Girls know girls. So the more girl FRIENDS you have, the more potential GIRLFRIENDS you'll meet. B)

Nancy

J-Man Newbie
You should read Dangerous Grains if you want to know all about the disease.  They talk about the ethnicities that are most likely to have celiac disease in it.  Grains were first grown in the middle eastern countries.  Since celiac disease is genetic, those cultures have had longer for the celiac disease genes to be eliminated from the gene pool. 

Well... the book arrives Monday I think :)

J

debmidge Rising Star

J-Man, you asked if you can be born with Celiac .... as per a prior post, it's genetic and has to be "triggered." As an example, my husband developed his at age 27 and was misdiagnosed (like a lot of celiacs are) with IBS until he was 53. In those "lost" years he developed other health conditions and it robbed him of youth and health. It runs in families and there's no cure other than diet. The sponsor of this forum, celiac.com has good info on celiac (I guess thru the Site Index).

Some families that have celiac disease get their non-celiac members "gene tested" to see if they have the genetic potential for this disease.

My husband did not have a problem getting tested for this in 2003, but from 1977 to 2003 he had a lot of gastroenterologists who obviously did not know that he had celiac and one actually told him to get mental help because he couldn't find anything wrong with him (this gastro was obviously doing the wrong tests!!). Finding a doctor who is sharp enough to diagnose celiac disease is the hardest part of this problem as most don't know about celiac or feel that it's so rare that this patient can't have it.

I work with a man who came down with celiac disease at age 72 after a bad bout of pneumonia. Since he didn't go very long before he was diagnosed, he doesn't have many symptoms....only when he cheats and eats gluteny bakery stuff. When he brings it into the office I reprimand him.

My husband's sister probably has celiac disease,but she's ignoring it but grumbles about her stomach aches all the time.

I don't have celiac disease but I read Dangerous Grains and have to say it made me want to stop eating Gluten ASAP.

Best wishes

D.

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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

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

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.