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To Go Full Out Or Not - Guten Sensitivity And The Fear Of Making It Worse


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#1 giggleburger

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Posted 20 January 2013 - 03:10 PM

Over a year ago now I started a crazy intense food testing process/elimination diet to try and figure out if gluten was what was bothering, and more importantly, if it was the only thing bothering me. I am positive I don't have celiac's and am sensitive to gluten. I went through getting pretty depressed about it, and then okay, then back again. At this point I'm pretty okay with it and have recently gotten some gluten free cookbooks and have been playing around with baking without recipes.

As I said I'm pretty okay with being gluten free at this point, the only thing holding me back from going full out and never "slipping" (sometimes I eat gluten things that people bake or something) is that I'm scared of making the sensitivity worse. Since I have been eating gluten free (and then later mostly gluten free) it takes way less for me to have stomach issues or some other issues I don't feel like mentioning.

So here's the end of my babbling that is starting to sound stupid. Since I'm gluten intolerant and my issue isn't life threatening is it bad to eat something wheat every now and then? I feel that since I think this way it subconsciously makes me less careful. I'm scared that if I cut it out completely then when I do eat some on accident the symptoms will end up being more severe than they are now.

Or does anyone have any ideas on ways to help me get past this mental block of thinking it's okay for me to eat some gluten? Deep down I know I shouldn't, it's just hard since I'm not full out celiac to take it super strictly.

Does any of this make sense? Or does it sound more like a whiny diary entry?
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#2 julissa

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Posted 20 January 2013 - 03:20 PM

here's my take on this, and you may get people more experienced weighing in. if indeed you are not celiac, then it should be a personal choice to eat gluten. if you are non celiac gluten intolerant, you aren't doing damage to your intestines, you are getting some discomfort of symptoms. if you are okay getting sick, or whatever happens to you, then eat it.

for me, I get dizzy and nauseous, there is no food on the planet that I would willingly eat to get those symptoms again.
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#3 kareng

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Posted 20 January 2013 - 03:22 PM

How do you know you don't have Celiac?
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#4 giggleburger

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Posted 20 January 2013 - 03:29 PM

How do you know you don't have Celiac?


I haven't been tested, so technically I guess I don't know. My mom and I agree that I have very few of the symptoms most commonly associated with it. I don't really know how to word it besides listing all the symptoms I do have, but I've looked into it plenty and am pretty positive.
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#5 mushroom

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Posted 20 January 2013 - 03:38 PM

You say you are positive you do not have celiac disease, but I am thinking that perhaps you did not have the testing?? That perhaps you are a bit ambivalent about possibly having celiac? No?? Okay. Because reading between the lines in your post, you would not be really okay with having celiac and don't fully envision a totally gluten free diet in your future. You seem to be looking for permission to cheat a little now and then, without having to suffer for it? No??

Okay, that's coming on pretty strong but it is what I sense from your post.

If you have not been tested for celiac then you do not know whether or not you have it, and you should treat your body as if you do. Which means zero gluten. Period. If you have been tested and came up negative, there is still a chance that you are celiac and there just wasn't enough damage / antibodies yet for the diagnosis. So the foregoing still holds true.

If you are in fact not celiac, then you don't have to worry about doing additional damage to your body, but I'm not sure how you would find out.

Regardless of all the above, those who are intolerant or celiac tend to find that the less gluten they eat and the longer they stay off it the stronger they react to it. It almost seems unavoidable. When your body was becoming intolerant to gluten it was a slow, steady process over the years and your body kept mounting a stronger attack to it, but it was gradual. After the gluten is gone the body is relieved, and alarmed to see it return, so it mounts an extra strong attack with mast cells to try to rout it. And yes, you will feel worse. :(

So if you are absolutely positive you are not celiac, I believe the only way you can keep from getting a worse response when you eat gluten is to keep on eating it :unsure:

ETA: Karen's response and your reply added while I was away from my keyboard.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#6 giggleburger

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Posted 20 January 2013 - 03:57 PM

You say you are positive you do not have celiac disease, but I am thinking that perhaps you did not have the testing?? That perhaps you are a bit ambivalent about possibly having celiac? No?? Okay. Because reading between the lines in your post, you would not be really okay with having celiac and don't fully envision a totally gluten free diet in your future. You seem to be looking for permission to cheat a little now and then, without having to suffer for it? No??

Okay, that's coming on pretty strong but it is what I sense from your post.

If you have not been tested for celiac then you do not know whether or not you have it, and you should treat your body as if you do. Which means zero gluten. Period. If you have been tested and came up negative, there is still a chance that you are celiac and there just wasn't enough damage / antibodies yet for the diagnosis. So the foregoing still holds true.

If you are in fact not celiac, then you don't have to worry about doing additional damage to your body, but I'm not sure how you would find out.

Regardless of all the above, those who are intolerant of celiac tend to find that the less gluten they eat and the longer they stay off it the stronger they react to it. It almost seems unavoidable. When your body was becoming intolerant to gluten it was a slow, steady process over the years and your body kept mounting a stronger attack to it, but it was gradual. After the gluten is gone the body is relieved, and alarmed to see it return, so it mounts an extra strong attack with mast cells to try to rout it. And yes, you will feel worse. :(

So if you are absolutely positive you are not celiac, I believe the only way you can keep from getting a worse response when you eat gluten is to keep on eating it :unsure:

ETA: Karen's response and your reply added while I was away from my keyboard.


If I had celiac I would go all out, there's no doubt about that. I'm not sure I even know what I think I'm trying to ask, which is why it's so rambly, long and stupid sounding.
I know that if I eat gluten there'll be repercussions, if there wasn't I wouldn't be here in the first place. I guess it's more that with celiac I know people who have had worse reactions the longer they're gluten free, and I just don't know if that happens if it's a sensitivity since it's not the exact same issues?

And then on the opposite end I really want to go completely gluten free, and at home I totally am. Sometimes in group settings I still feel weird and end up eating gluten things, and I just don't know how to get over that mentally so I can go full force into gluten free. Does that even make sense?
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#7 LauraB0927

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Posted 20 January 2013 - 04:30 PM

Someone please correct me if I'm wrong, but I remember hearing (or reading on here maybe) that if someone with NCGI continues to eat a high gluten diet, they could still suffer some damage in the small intestine from all the aggravation from the gluten, and eventually lead to leaky gut issues. Is that true? Just making sure I have my facts straight...

Giggleburger - it definitely sounds more of a mental thing, especially in social settings. Sure, its weird for all of us at first to not be included in all the seemingly wonderful things when we're out with gluten eaters, but you get over it. The more casual you are with "Thats ok, I cant eat gluten" the less of an issue it is. My sister is self-diagnosed NCGI, and everyone has accepted it and she's now completely gluten free. There are some great apps for smartphones that show you the places to eat in your area that offer gluten free options - there may be more than you think. Try "Gluten Free Registry" (its free) and you can check it out. At the end of the day, you have to make an active personal choice about doing what your body wants you to do, or what your social life suggests that you do.
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#8 mushroom

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Posted 20 January 2013 - 04:31 PM

Yes, that makes sense. It is a lot easier to be gluten free at home than when you are out. At home you are queen of your castle and can organize things so that there is no gluten and no temptation. When you are out, temptation (and tempters) are everywhere, people who don't understand (for celiacs at least) that you can't have just a little. People who are careless with food handling and preparation, in restaurants and elsewhere. It is a mindset that you have to develop, okay, I am drawing a line in the sand and I will not knowingly cross it. Because there will be people who will sabotage you now and again. But so long as you draw that line and don't cross it - well, you are gluten free; and then you have to adjust your behaviors so that people do not have the opportunity to sabotage you. And you have to resist the peer pressure, the feelings of not wanting to be different, of fearing drawing attention to yourself, by refusing the food, and the inconvenience of having to take food with you so much of the time so you don't starve :D No one can promise it will be easy, no one can even promise you will be comfortable with it at first, but practice makes perfect. You just learn to say "No thank you" and if you have to elaborate further "I can't eat that" or even further, "I'm allergic to gluten" (if you have to go that far). I know, a little white lie, but it gets the attention of people. :)
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#9 Adalaide

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Posted 20 January 2013 - 04:33 PM

I haven't been tested, so technically I guess I don't know. My mom and I agree that I have very few of the symptoms most commonly associated with it. I don't really know how to word it besides listing all the symptoms I do have, but I've looked into it plenty and am pretty positive.


There is such a thing as silent celiac in which someone had absolutely no symptoms at all. Without testing there is simply no way to know if you do or do not have celiac. Think about how scary that is for just a minute. Think about what you could be doing to yourself, all of the potential effects this could have on you long term because you simply can't rule out having celiac. You wanted a reason not to cheat. Done.

I guess I should add that while that probably comes across as harsh, it is meant as a hey, I care so don't kill yourself please.
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#10 giggleburger

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Posted 20 January 2013 - 04:51 PM

There is such a thing as silent celiac in which someone had absolutely no symptoms at all. Without testing there is simply no way to know if you do or do not have celiac. Think about how scary that is for just a minute. Think about what you could be doing to yourself, all of the potential effects this could have on you long term because you simply can't rule out having celiac. You wanted a reason not to cheat. Done.

I guess I should add that while that probably comes across as harsh, it is meant as a hey, I care so don't kill yourself please.

I'm totally down with sounding harsh, I'm pretty brash/sarcastic so I sound that way myself a lot...
That is a pretty good reason though. I hear about so many people not getting correct results with their testing too, so you could have it and not find out that way. So maybe I should just try thinking of it as a strong possibility so I feel like I legitimately have to to stick to it.
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#11 giggleburger

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Posted 20 January 2013 - 04:56 PM

Mushroom and Laura: You're both right. I don't even feel that pressured to eat it, I think I do it to myself. This is my last semester of college, so maybe I'll be busy enough that I won't have as many opportunities to have to make myself say no and I can get into the habit of stopping myself.

Thanks guys. =] I know it sounds like a stupid thing to be talking about, but it's nice to hear from people who can kind of relate. I think I need to try going on here more often so I can get that feeling more often. Maybe it'll help.
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#12 mushroom

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Posted 20 January 2013 - 04:57 PM

So maybe I should just try thinking of it as a strong possibility so I feel like I legitimately have to to stick to it.


Yes, that is what we are trying to say in our roundabout ways, because it very well may be true. :)
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#13 Adalaide

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Posted 20 January 2013 - 05:10 PM

I'm totally down with sounding harsh, I'm pretty brash/sarcastic so I sound that way myself a lot...
That is a pretty good reason though. I hear about so many people not getting correct results with their testing too, so you could have it and not find out that way. So maybe I should just try thinking of it as a strong possibility so I feel like I legitimately have to to stick to it.


My blood tests were all negative, twice or three times I can't remember now off the top of my head how many times I was tested. But my biopsy was positive, so I am always very skeptical of negative blood tests. At this point it is my running joke that I am just a really awesome test taker. :D If you just imagine how sick you would have to make yourself at this point to get tested it would probably make you dizzy just thinking about it. I have to agree that just going with the idea that you can't rule it out rolling with it is probably the best idea if it keeps you from making bad choices for your health.

And also, if you never leave your house without a snack the temptation will be so much less. When you are offered something and decline but are hungry and can whip out something healthy to snack on, it really is a boost to know you are doing something really good for yourself. You'll feel awesome.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#14 1desperateladysaved

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Posted 20 January 2013 - 07:17 PM

"I"m pretty okay with being gluten free at this point, the only thing holding me back from going full out and never "slipping" (sometimes I eat gluten things that people bake or something) is that I'm scared of making the sensitivity worse. Since I have been eating gluten free (and then later mostly gluten free) it takes way less for me to have stomach issues or some other issues I don't feel like mentioning."Giggleburger


]My personal opionion after 30 years of fighting celiac is: That your body does not become more sensitive to gluten, but it becomes more able to let you know. I would concentrate on protecting your health.

I know the social aspect is really hard on some people. Perhaps you do need some test results. Perhaps you need your body to express itself more dramatically.

Whatever, the case, I hope you will get what you need for your health.

Diana ***
]
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#15 jebby

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Posted 20 January 2013 - 09:53 PM

Someone please correct me if I'm wrong, but I remember hearing (or reading on here maybe) that if someone with NCGI continues to eat a high gluten diet, they could still suffer some damage in the small intestine from all the aggravation from the gluten, and eventually lead to leaky gut issues. Is that true? Just making sure I have my facts straight...

Giggleburger - it definitely sounds more of a mental thing, especially in social settings. Sure, its weird for all of us at first to not be included in all the seemingly wonderful things when we're out with gluten eaters, but you get over it. The more casual you are with "Thats ok, I cant eat gluten" the less of an issue it is. My sister is self-diagnosed NCGI, and everyone has accepted it and she's now completely gluten free. There are some great apps for smartphones that show you the places to eat in your area that offer gluten free options - there may be more than you think. Try "Gluten Free Registry" (its free) and you can check it out. At the end of the day, you have to make an active personal choice about doing what your body wants you to do, or what your social life suggests that you do.

Hi Laura, You are right. There is increasing information that non celiac gluten sensitivity is associated with neurologic problems well as autoimmune problems, likely through our innate immune systems. It is not as "harmless" of a diagnosis as it is billed to be!
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