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Need A Reason Not To "cheat" On Diet


thleensd

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thleensd Enthusiast

I know that some of us here (like myself) went through horrendous experiences and will therefore never knowingly touch gluten again. However, I know some people were diagnosed and didn't have many symptoms to speak of and don't get a physical reminder if some gluten slips in.

I'd like to be able to offer something concrete to someone I know that cheats once in a while since they don't get a reaction. Are there stories here or elsewhere I can point her to? She's smart, but young, away from home, and invincible. I can't just say, "you might get cancer" (like trying to tell a smoker to quit...). I don't think she'll come on here and browse on her own.

Thoughts?


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mushroom Proficient

If she knew there were a violent man who hated women, and loved to torture them, loose in the neighborhood, who had just escaped from jail, would she walk the streets alone at night? That is the equivalent of what she is doing, the kind of risk she is taking, if she continues to eat gluten. He may not find her, but if everyone else is indoors safe, he very well might. That is the kind of risk she is taking. If she is not afraid of harm, is not afraid of dying a tortured death, well I guess that is her business. There is nothing you can do to protect her. She may say she is a karate master and can defend herself - well, good luck. You can only fight back against gluten by avoiding it.

Not much help I am afraid for someone who won't listen.

adab8ca Enthusiast

and unfortunately you cannot make anyone do things they don't want to...i was clearly sick for a LONG time without symptoms since the damage was so horrendous but if I had known sooner, I maybe could have avoided the HELL i am in right now. When it hit, it hit me hard and I was 42. Thought I would end up in a wheelchair from neurological symptoms. This diagnosis is a GIFT. She can avoid SO much trouble...Too bad she can;t come live in my broken body for a bit to see what her future likely holds.

sb2178 Enthusiast

Well, I lost almost 6% of my bone density 14 months, and of that time I was only clearly symptommatic for 2. Do the math, and she'll have stress fractures and non-traumtic breaks within 10 years. Yay, hip fractures in your thirties and forties! (Those results were very weird. Scared me silly, and it was just incidental that I worked in a research center and happened to demo/teach the scanner twice.)

Anemia is also insidious-- you adjust to the new "normal" but it is not normal to be out of breath after going up two flights of stairs at a normal pace.

Or maybe she'll develop a higher sensitivity and that problem will solve itself? Not that I actually wish that on anyone.

color-me-confused Explorer

Well, I lost almost 6% of my bone density 14 months, and of that time I was only clearly symptommatic for 2. Do the math, and she'll have stress fractures and non-traumtic breaks within 10 years.

Wow. That's a frightening rate - I had no idea that such bone loss was possible so quickly. I meet w/ my GI doc in 3 weeks and the gene test and a bone scan for a baseline on my list.

annegirl Explorer

Well, cancer isn't as far out as she might think. I just lost a friend to cancer at 35. He had Crohn's not Celiac, but it's similar enough to be scary (I have another friend with Crohn's that manages her disease by being gluten free).

He was sick at 32 with cancer, got it to go into remission and then it came back right after he met his girlfriend. He passed away a month ago.

It's just not worth it to mess around with your life. It might seem ok when you're young....but it will bite you in the butt later.

This from a girl who NSAID her way to leaky gut at 15 {braces hurt!} and suffered through 13 years of chronic pain, illness and allergies before discovering what the underlying issue was.

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    • 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.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
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    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
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