8 replies to this topic

[cavernio]

So because my neuropathy's been getting slowly worse again, I figure I have to try a more restricted diet. I've decided to go grain free for 2 reasons. Firstly, things like corn and quinoa apparently can cause an immune reaction in celiacs, and secondly, I'm just worried that I'm more sensitive that minimum quantities of gluten or not so small amounts of cc from oats, and cutting out flours should avoid those. My plan is to cut out all flours (including things like coconut flour, just because of cc), but I don't know if I need to cut out grain oils too. In a month or so if I'm noticing some improvement, I may try adding some back. Probably will start with rice.
I eat a lot of non GMO canola and soy oil in mayo, margarine, and fake cheese products, and I obviously don't want to give them up along with all the grains. I know that if I were on a paleo diet I should give up these things, but to follow paleo standards isn't really my goal, but maybe I should be trying that.

I know that people suggest doing individual food challenges, but my nerve pain is constant and will take a long time to heal even if I weren't eating anything that were causing it, so I don't think I can trust my nerve pain from day to day to let me know. And I don't have stomach issues like most people.

Anyways, what do you think? Should I give up grain oils? What about things like sunflower oil, should I be worried about cc from gluten in all oils if I am really sensitive?

Oh, I am taking vitamin E supplements, just started, I figure I should have been doing that awhile ago since it's a fat soluble vitamin and deficiency issues are nerve damage. They say gluten free on them, but they're manufactured from soy oil. I'm not giving them up.

[pricklypear1971]

If you're concerned about cc in your oils try calling your coconut oil/flour manufacturer and ask if they are processed in a shared facility. Same with any nut oil/flour.

I have a hunch coconut will be manufactured more on gluten-free lines than the others. Just a feeling i have.

[Takala]

I don't trust sunflower oils, it seems like I have random reactions (skin) to plain gluten free chips that are made with it, and I have seen a lot of sunflower seeds that are rotated in fields with other grains, or have the same combine equipment and are stored or run with grains. A lot of packaged sunflower seed in the stores says "processed in a facility with...."

So try olive oil. I use a little bit of real butter now and then, but I can do almost everything with olive oil. I've tried coconut oil, too.

Re: the quinoa- use the Ancient Harvest brand if you're worried about c'c. They're kosher, and the Rabbis checked it out where they grow it in South America, because they REALLY don't want the quinoa to have regular grain traces in it, for religious reasons. For corn, I try to avoid GMO as much as possible, and have found one blue corn flour that works, in small quantities, knock on wood. Fresh corn works if you want to slice it off the cob, process it, and then use the corn mush as the liquid in recipes. But obviously, if you want to go grain free, that is fine. You may want to try amaranth and buckwheat seeds. I am very low grain, and almost semi- Paleo except I have this thing for cheese, which I just keep telling myself is sort of like bone marrow, only the cow didn't die for it. Re: cheese - I do better on organic cheese. Cheese with pretty food coloring and preservatives.... not good. Some people make their own vegan cheeses from nuts, you can find recipes on the internet for them.

I don't do much mayo, because even though the jar says "gluten free" and it's a soyless version, I still notice an ever so slight puffiness sometimes when I eat it a few times a month. Probably trace cc. I find that mashed avocado is really good on nutmeal/tapioca bread sandwiches, again, you can add some olive oil and a bit of pure cider vinegar to it to make it more dressing- like.

I'd keep the coconut flour, because it is tropical, frequently harvested overseas without a grain field for miles except rice, and less likely to be cross contaminated. You may be looking to ditch way too much of the wrong thing if you are an oat reactor. Once I stopped using the brands of flours that are made in oat processing facilities last year, I had a dramatic improvement. Sorry, Bob's Red Mill, but one has to do what one has to do. Bummer.

I wouldn't do the individual vitamin e, because as you noticed, most of it is made with soy now. But I am female and my thyroid is getting slower, and I try to limit my overall soy exposure - I'm already on a gluten free multivitamin with E, so why take more, they've found out that large doses of vitamin E are not so great for humans, after all. And to think that when I was younger I was slugging this stuff down.... ugh.

[mushroom]

Like Takala, I mash avocado as a sandwich spread. I avoid corn-, soybean-, sunflower-, peanut- and canola oils. I use olive, coconut, avocado, grapeseed oils and butter. No quinoa, millet or amaranth - buckwheat and sorghum instead. I also use coconut, almond, teff in addition to tapioca and arrowroot and rice flours. I can tolerate some corn starch and some potato starch. Organic mostly if I can afford it. And definitely aim to avoid all GMO's. Only organic, free-range beef.

[a1956chill]

My diet is very restrictive,, I only use ( a good ) olive oil and occasionally real butter .

** just a note on the vit E, If you continue to have problems you may want to consider losing the soy oil*

[lisa74]

In my opinion, I think it's best to use coconut oil and olive oil. I have neuropathy as well and just started taking vit D; hope that helps. B12 and Magnesium helps I know, and I take them, but I read that vit D can work very well with these too. Like you, I also take vit E but I take it for my skin and heart. Hope you get to feeling better soon!

[cavernio]

Well the only products that I can say I've noticed having a problem with specifically are nuts from bulk barn and dairy. Highly like it was cc on the nuts, but before now, I didn't have a noticeable gluten reaction. Like when I ate gluten for my biopsy I didn't notice anything until at least a week in, and it's was all very vague. So I haven't been worried about the soy specifically, especially since I haven't seen an article saying it may cause immune responses in celiacs, unlike corn and dairy. But I'm just sorta thinking I should be cutting out the processing part of foods, just makes it easier on me.

I JUST started taking the vitamin E, and I don't want to stop taking it in a relatively large dose still, at least for the first month, because vitamin E deficiency can cause neurological problems, which is my biggest concern right now. Any studies I read where it suggested it might be bad to take it was at 1000UI everyday for years, and even then it didn't seem too bad. Not planning on doing that anyways. And it's fat soluble so of course I probably wasn't absorbing it, so I'd be quite surprised if I weren't low in it tbh. I take B vitamins almost daily, but my B12 has never been flagged as too low by canadian standards. I'm worried about taking a multivitamin because they always have too much B6 in them (50 ug or whatever, enough to maybe cause neurological issues by itself), either that or are for kids and have basically nothing in them.

So I know Bob's Red Mills processes glutinous grains too, so I figure they have to have separate lines and thought that, well, oats would be with the glutiny flours. Did you actually contact them about their oats or you stopped Bob's red mills and then felt better? I don't know if I have an oat issue, but my sister definitely has an oat issue, so I would hardly be surprised if I had one. I have avoided oats though, as per doctors strong suggestion.
gluten-free brands of grains products are Dunkerken, bob's red mill (will stop that for certain), El Peto, Udis and some thai brand of glutinous rice flour. I have a local supplier of buckwheat who only mills buckwheat. Oh, I do get some things from the gluten-free free bins from bulk barn (not the same area where I got the nuts that weren't marked gluten-free), but I'm still not sure if I should do that or not.

I'm just so sick of contacting companies about what might be cc'd with what else, especially how some of them aren't helpful really, and just tell you to check the label.

I'm good about eating organic meat unless its gluten-free hot dogs (guilty and fast to prepare pleasure), I was on an organic/local meat diet before being dx celiac because I think factory farming is needlessly cruel, and I've certainly done a lot to avoid GM products, especially corn.

[pricklypear1971]

I would stop anything out of bulk bins. Scoops get mixed, bins rotated in and out (and you don't know what the cleaning process is).

[cavernio]

Yeah I should prolly do that. They do keep the bins lined with plastic bags though, and all the gluten-free flours are next to each other so scoop mix up, for instance, shouldn't be an issue. But I have seen them clean off the lids and scoops on them with a vacuum brush that they then use to clean ALL the bin tops with.

Thanks for all the advice/stories. I'm actually going to keep eating the regular stuff I have been until my next blood test (which should be within a week) just to see if my antibodies might be elevated from it. I know that even if they aren't I'm still going to change up what I'm eating because I want to feel better, but if they are then I definitely should be looking into cc or oats as the key concern, as opposed to other food intolerances, (which I still would possibly have too), but I could narrow my scope just a little right now.