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nyssou

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nyssou Newbie
nyssou
Posted

hello,

i've been lurking these boards for about a month now so i thought i'd join up and participate. i really feel the need for some kind of "support group" right now, so it's great that this is here.

i'll tell you all about my gluten related illness(s):

i am lactose & gluten intolerant and, i think, very likely celiac, though i have not been tested for celiac. the reason for this is because i dont want to eat gluten in order to have the tests done.

i haven't felt completely well since i started developing lactose intolerance 3 years ago. it began with not being able to drink milk or cream, which was not a big deal because i dont really like the taste of milk and usually always drank soymilk anyways. i simply came to like the taste of black coffee. very quickly, i was able to eat fewer and fewer dairy products without becoming ill, and was only able to eat certain brands of yogurt and types of cheeses. now i am strickly non-dairy.

im september i moved to a very very small community to go to a very very small arts college for four months. my only transportation was by bike, and everything was very far apart. incidentally, this changed my food choices - i was often very hungry from all the exercise, but could only grocery shop via backpack & bike. so i often ate meals of rice, vegetable, and cheeses that i could still eat at that time. i cut bread out of my diet because it got smooshed in my backpack. and i wasnt really eating any other sources of gluten - i dont like processed food and have never been able to digest it well, so quite by accident i was on a gluten free diet. it was the closest i had felt in three years to being fully well.

when i returned to "the city" and was in civilization again, and easy access to gluteny foods, my diet changed drastically. i drank beer 3x a week, ate oatmeal all the time, bread, etc etc etc. and i got horribly horribly ill. i got a terribly bloated belly, "demon gut", as i call it (your typical 6 month pregger belly), lost 20 pounds in 2-3 weeks, alternated between extreme d and extreme constipation - it literally looked like i had chewed food and spat it into the toilet, or i would sit on the toilet and just cry for hours. i was incredibly hungry but felt like i couldnt eat enough, in part because i was so bloated and sometimes constipated, i simply couldnt put anything in my belly without extreme pain. i had extremely bad joint pain and was incredibley fatigued.

i cut gluten out of my diet because a friend suggested the possibility of celiac disease, and my doc encouraged that move and gave me an order for blood tests. i never got the blood tests (not sure why - fatigue? it was hard to do ANYTHING) and now it is too late. but i feel 100% amazing when i eat a very low-processed, gluten/dairy free diet. if i eat gluten, i dont always get bloated and d/c, but i always get super fatigued, joint paint, depressed / cry easily, and become (for some reason?) socially awkward and anxious.

anyways,

i will end this post now because it is getting VERY long. my apologies. it is very nice to vent about all my dietary troubles to an (assumably) receptive audience. i like eating gluten free because it is very healthy and makes me feel great. but socially, it is very difficult, sometimes i feel like a huge pain in the ass to my friends. sometimes i feel like i talk too much about my gluten intolerance and related woes, so maybe posting in this forum will help me regain control of that aspect of my life - i want to be able to talk tk my friends about things other than gluten.

thanks to anyone who made it through all that.

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sb2178 Enthusiast
sb2178
Posted

Welcome. We probably all talked about it too much in the beginning. Took me about 8 months to shut up/teach everyone who I needed to about it. It's challenging because in the beginning you think about it ALL the time, because food is such an integral part of life.

You'll get used to it, and your friends will adapt somewhat if they are nice people. Most of my friends defer to me in terms of restaurants and/or ask me to join them for drinks/non-food activities instead. I'm sure I don't get asked to something once in a while due to food; but honestly, I don't want to go sit in the new pizza place and drink coke.

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      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
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      By trents · Posted

      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
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      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."  
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