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Is It All In My Head?


torimuse

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torimuse Rookie

My only discouragement right now is that it could take as long as October or November to get final results from all of this. I've never been a very patient person, but now I really, really have to be, and it's driving me up the wall. :lol:


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Marz Enthusiast

My only discouragement right now is that it could take as long as October or November to get final results from all of this. I've never been a very patient person, but now I really, really have to be, and it's driving me up the wall. :lol:

Don't worry, you might find it's quicker than you think :) I started re-introducing as soon as I started feeling better, which was one week, and then reactions were almost instant. I'm still in the process of re-introducing stuff, but I'm only going to wait a few days until I feel 100% again, then try with the next food group.

Hopefully you move soon so you can start cooking for yourself again, it really sucks to rely on takeaways/friends/family to cook for you in the meantime :(

torimuse Rookie

Thanks, Marz. :) I move in one week and six days...well, it's practically 5 now. (10pm my time) I think the time will seem to go faster once I get there and will be at the point where I have to consciously gage what I'm eating and what reaction I'm getting. Aka, the sheer nervousness of "Will I get a reaction from this?" I'm thinking of at least waiting a week for delayed reactions if I'm not noticing any reaction to something.

Also, finding milk is damn near impossible. ::pouts:: Though I've discovered that the Naturally Yours store here has products from Pacific Foods, including their dairy (including casein), soy, and gluten free rice milk. I saw the warnings against Rice Dream, so I did snooping and found a line on Pacific Foods' website that they don't use gluten products in processing, so I'm thinking I'll be okay.

The good thing is that I'm currently living in my own apartment (well, shared) so I can still cook for myself. The unfortunate part is that my roommate doesn't realize how serious a condition it is for me. (Tell the truth, I didn't realize I was *this* intolerant 'till last night.) I was moving one of her pizza pans that hadn't been washed yet to make room for my cutting boards, and it was evidently enough CC to leave me cramping and nauseous for 20 min. :( She's on vacation for a week, so I'll thankfully be able to scrub the kitchen tonight and have a gluten free kitchen for a little bit. :)

Though now I'm starting to rethink when I'll introduce different things because of how broad a category lectins are and all of the other stuff in there that could be causing a reaction all by itself.

I'm thinking: fish, shellfish, mushrooms (the non-suspected non-lectins), tree nuts, beans & corn, peanuts, nightshades, soy, potato, eggs, and dairy (lactose free first so I can see if it's casein or not).

mushroom Proficient

It was somewhere on this board that I first read about it, and then within a couple days I ate a can of pork and beans and had a reaction. Granted, I could've been glutened by "natural flavors," (2am and a holiday, couldn't call the company) but it's one of those "better safe than sorry" moments for me right now. The only problem I'm having is trying to define them. Right now, beans (legumes), seeds, whole grains, and nuts seem to be what I've come up with, but I'd be grateful for any corrections or additions. Also, any ideas as to what order I should start introducing foods...

It's unfortunate that it takes quite a bit of trial and error with the lectin problem to get it sorted. I didn't realize I was nightshade intolerant until I decided not to eat them because of my psoriatic arthritis, since nightshades are known to be inflammatory. Once I eliminated them, just like gluten I started reacting more strongly to them. I had eliminated potatoes, but then realized that the residual itching I had (I would get a hive-like reaction to half a baked potato) came from the potato starch in the breads I was buying/baking. As soon as I eliminated potato starch the itching went away. Interestingly enough, I can eat a little fresh tomato, like in a BLT, but anything cooked is deadly. I had always (semi-unconsciously, but obviously with a reason) avoided the refried beans that my husband uses in our "taco-less" tacos, but then I started discovering the legume connection. Stuff I read said you should be able to eat green beans and peas, but no, I reacted to them too, so I didn't laboriously go through and test every legume after that. At some point I may challenge split pea soup and lentils, but for now they are all verboten.

Corn had been a problem for me since 1969, and in the early 90's I tested sensitive by skin test to corn and soy, so I had mostly avoided those. When I went gluten free I was so busy looking for gluten that I failed to notice how much soy had crept into my diet and developed a red itching rash to that. I can tolerate a little corn in corn starch...

The citrus problem I think was just that I was eating too much of it. After a year, I have had some lemon juice in a salad dressing and had no problem, so it is something I am gradually reintroducing. Soy will never come back for me. I don't know yet about the others. At the moment I try to avoid high-lectin foods so as not to initiate any other sensitivites.

If you are sensitive to lectins, it is good to get onto them early. I was too soon old, too late smart, when I learned about them, and have gone on to develop an erratic heart beat and tachycardia runs when I consume them :( , together with bloating.

If you would like to read more about them, go to krispin.com. Krispin has the best summary of the lectin problem I have seen.

I hope you don't have problems with too many of them. Fortunately, I do not seem to have a problem with dairy -- goodness knows I have problems with too many other of them :unsure:

torimuse Rookie

::hugs mushroom:: Thanks for all your information. Now that I know that, I'll probably end up separating green beans and peas from the others if I end up with a reaction, just to be sure. I don't *think* I have a lectin intolerance, but it's one of those, "You never know until you try," kind of deals. I *did* react to pork and beans, but they *did* have natural flavoring in them. And now all the intolerances are seeming to hit at once. I take gluten out, I react to milk. I take milk out, who knows what I'll react to next. Easier to take them all out now and get it over and done with.

And you're exactly right. Two months of torture is nothing compared to the sickness I won't get for knowing now instead of finding it later. I'm still very young at 24. I can adjust and live a great majority of my life free from feeling sick. Part of me wishes you found it early, too, but the other part of me is grateful for your experience because now you can help not only me, but anyone else who might suspect lectins.

(Psst! Skylark! That last part goes to you too, with all the mental problems that seem to have paralleled mine.) :) All you guys on this forum are freaking amazing.

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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
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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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