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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
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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