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Dealing With Ups And Downs Of The Disease.


Nettie

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Nettie Newbie

I sometimes get rather frustrated. I love food and well, as we all know, it doesn't love us. I have issues with not being able to eat normally and sometimes I get overwhelmed with it all. I have symptoms on a daily basis and afraid to eat anything because of the horrible symptoms I have. Please someone help me....


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tarnalberry Community Regular

It seems like there are two issues here:

1) the emotional/psychological challenge of what it takes to eat gluten-free in a gluten-eating culture

2) you still don't feel well

Starting with 2)...

Are you completely gluten free? If not, that's probably why (but that's also something you already know). If you think you are, it's worth double checking EVERYTHING that makes contact with your mouth - that includes lipstick if you wear it or are every kissed by someone who does. If you've done that, it's worth checking into secondary food intolerances, like dairy or soy (or many others), that you may find you need to eliminate, or just reduce or avoid for a short time before reintroducing in smaller quantities.

Can you give us a little more information on what you eat, how confident you feel in the foods you're picking and in avoiding cross contamination, and your symptoms?

As for 1)

You don't have to give up your love for food just because you're on this diet. If you're just gluten free, there are only four items you have to avoid - wheat, barley, rye, and (depending on you) oats. Rather than thinking of it as what we are taking out, look at all the options you have! Out of every edible food on the planet, that leaves us with a lot of choices! There are still an awful lot of grains we can eat (amaranth, quinoa, rice, corn, buckwheat, millet, teff, sorgum - more that I'm sure I'm forgetting). There isn't a single fruit or vegetable denied to us (until you start talking about other food intolerances, but there is a MYRIAD of edible fruits and vegetables). And fruits and vegetables can make a huge variety of dishes - from root vegetables to leafy vegetables to tree fruits to berries... There is a wide variety of meat if you eat it. (I can get chicken, turkey, (other birds), pork, beef, buffalo, and lamb fresh at Whole Foods - ostrich and venison frozen, then there's specialty places that can get you other things as well). There's a cornucopia of fish, depending on where you live more or less of it available fresh. And then there are beans and legumes (so many varieties of beans and lentils) and nuts and seeds. And oils and herbs and seasonings and teas... (I could go on, but I think you get the idea. ;) )

It's really a change in mindset, but there's nothing wrong with that! Since this is something you need to do for your body, figure out the way to do it BEST! And TASTIEST! That may mean more cooking, or it might just mean getting really creative with using whole ingredients really easily so there isn't a lot of cooking to be done. Yes, eating out at random isn't the same. But that doesn't mean you can't explore food; you just are now exploring a different part of the gastronomic world! (And we're all here to help. And, yes, commiserate that sometimes, it really is overwhelming and annoying and aggravating to be "different". But - *shhhh* - we're all different from everyone else. :P:lol:)

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    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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