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Learning About It For The First Time


J-Man

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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


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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.

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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.

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  • Posts

    • thejayland10
      You are right, I just feel I may have not been on top of it and Ive caused damage for years without knowing. Seems like nothing though?   
    • trents
      No, one crumb from a month before the blood test would not materially affect the results of the test. I sense you are devoting a lot more "worry energy" to this than it deserves. That will do you more harm than a tick over normal on the TTG-IGA score.
    • thejayland10
      Sometimes I have a bit of stomach, discomfort, anxiety, tiredness, and soreness but nothing that stops by normal day to day activities. I work a ton and am very active so likely it is related to that and not my celiac but unsure with everyone's symptoms and stories I see online.  I will definitely start doing this every year from now on. Could one crumb of gluten from a month before that blood test caused that spike ? I am trying to really trace back and think 
    • trents
      The do what? Give you a gluten-like reaction you mean?
    • trents
      Different labs use different reference ranges for celiac-related tests. They concoct the tests a little differently in each place so the ranges are custom. So, I would trust the lab that analyzed the test and not google.' All celiac diagnostic tests are less than 100% specific. That is to say, there are other medical conditions, some medications, some other health issues and even some non-gluten foods that can cause them to be elevated, at least mildly. And your TTG-IGA score is barely elevated. If you were to get retested next week it might be back in normal range. It is normal to see some fluctuation in most labs and in most physical and biological parameters. Can you be more specific about "certain things" that you feel. How do you feel different? Are there any specific symptoms that might be tied to a celiac regression? It would be a good idea to check all pantry items to see if there have been any ingredient changes over time that might have introduced gluten into your diet and to check meds, supplements and oral hygiene products as well. But other than that, I would not stress out about it as long as you aren't experiencing any particular health issues that you can tie to celiac regression. I certainly would recommend that you get your antibody levels checked more often than every 10 years so that you have concrete data to work with. I would go for every year if your physician would agree to it. It could be included as part of your annual wellness check.  Yes, your posts are all showing in the thread. No need to duplicate via PMs.
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