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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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    • trents
    • Clear2me
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It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. 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Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. 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    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
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