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

[giggleburger]

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?

[julissa]

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.

[kareng]

How do you know you don't have Celiac?

[giggleburger]

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.

[mushroom]

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

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

[giggleburger]

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

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?

[LauraB0927]

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.

[mushroom]

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 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.

[Adalaide]

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.

[giggleburger]

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.

[giggleburger]

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.

[mushroom]

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.

[Adalaide]

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. 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.

[1desperateladysaved]

"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 ***

]

[jebby]

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!

[Madagascar]

i would say i have very few problems with eating gluten foods - i'm only 2 months gluten-free, and i did get tested but the tests were mixed and not clear-cut that i have celiac disease. some things were high enough to register, some were not and i didn't get the biopsy done.

here's what keeps me gluten-free, however: my mother's side of the family (i'm pretty sure my mom had celiac) has auto-immune diseases galore. i don't want them. my grandmother and 2 of my 3 uncles had diabetes and none of them were overweight and all lived an active life (farming & construction work). i think 7 of my 15 cousins have diabetes. i have a cat that's been diabetic for 2 years - and i don't want it. my mom had and one cousin has ulcerative colitis; my grandma had crohn's disease.

i've had stomach problems since i was a teenager and i have enough symptoms that i'm positive i do have it. so even though my stomach was only upset perhaps once every 3-4 weeks while i was eating gluten, i'm trying to be 100% gluten-free because i don't want those auto-immune diseases that seem to come with the antibodies from celiac disease.

it's not fun avoiding gluten, but it's more fun than the prospect of developing those diseases. maybe you don't have a family history like that so it's not as scary of a prospect, but it's sure working for me. i didn't actually know of all of my cousins' problems until i went gluten-free and opened a conversation up with a bunch of them on facebook.

i'd just encourage you to look at the big view - as a college student i'm assuming you're 20ish and you'd like to live another 60-70 years and be healthy as possible for those years.

hang in there! you'll figure out how to manage things. having food with you so you don't feel compelled to eat others' food is a great idea. i wouldn't think twice about saying "i'm allergic to gluten" either. i had lots of food allergies by the time i was in college and people were great about understanding and not pressuring me. your real friends will help you out and whatever the rest think doesn't matter.

[GFinDC]

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!

Hi Giggleburger,

I agree with Jebby, we don't really know what the consequences of NCGI are. It was confirmed to exist recently but that is about it. No long term studies have been done to figure out what it does to people. And the issue of damage to the gut is not resolved. The innate immune system is one of the possible players in Crohn's that I have seen discussed. The article linked does list some possible consequences near the bottom. Remember though, this is not definitive, but just a short study, not a long term project to really figure out what it does to people's guts after a few years.

The endoscopy can only reach about 5 feet of the beginning of the small intestine, so anything beyond that is hidden from the doctors. What happens to that area in NCGI? We don't know yet.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

[cavernio]

"I just don't know if that happens if it's a sensitivity since it's not the exact same issues?"

Firstly, to reiterate, you can't say you don't have celiac disease if you've never been tested. My intestines were seriously damaged by the time I got diagnosed but bowel issues weren't my main symptom. I think my mental health problems (and all the usual unemotional problems that go with it like fatigue and brain fog) are from undiagnosed celiac disease, and they started 13 years ago. I slowly developed peripheral neuropathy before I developed any sort of intestinal pain and bloating too.

If you can hack eating gluten for 3 months, you should schedule a biopsy and blood test in 3 months and know for certain. You will then have a medical diagnosis (imagine when you're old or even just in hospital for some accident and some idiot nurse is looking after you and trying to feed you bread because you don't really have a problem with gluten), plus you won't have to worry about all this wondering that you have.

As to actually answering your question about whether it's the same thing or not, unfortunately there's not good clear-cut knowledge about gluten sensitivity. But I find there's also more information about celiac disease and gluten sensitivity than you've probably been exposed to. Just last week I discovered things very pertinent to my own situation. Like this article I just read (it's a little technical but pretty good given how much of a scope it has) that's made me realize my hurting hands and feet are likely not just vitamin deficiencies but my body that has attacked and damaged parts of my nervous system as well as my villi.

Open Original Shared Link

Even if you just browse, there's a very simple diagram on p.327 that shows that different Tcells found in different parts of the body can act separately or together to be a part of celiac disease, each with their own 'job' of damage.

Open Original Shared Link is another good read if your symptoms involve things like headaches or fatigue or other 'mind' issues.

People with gluten sensitivity often have positive blood tests but negative biopsies. But then you've also probably heard that you can have negative blood test but positive biopsy. With that said there has to be a group of people who are negative in both but who still react to gluten.

In any case, I guess this is more of a personal revelation of mine, but I don't think gluten sensitivity is as separate from celiac disease as I thought just a few days ago.

[nvsmom]

I too thought I might be gluten intolerant before I tested for celiac disease too... turns out I actually had celiac disease...

You'll never know until you are tested if you are a celiac or not. I haven't read all the posts, so I'll ask: Is there any reason you don't want to be tested? If not, do it now while you are still eating gluten so you'll have an accurate test result (or as accurate as the current tests can be).

The most common tests are (I believe):

ttg IgA and IgG

total serum IgA

EMA IgA

DGP IgA and IgG

as well as the biopsy

Most doctor will do some sort of combination of the above tests. I just had the ttg IgA, IgA, and EMA IgA; it was just an extra half hour out of my life. I encourage you to do it.

Best wishes.

[giggleburger]

You'll never know until you are tested if you are a celiac or not. I haven't read all the posts, so I'll ask: Is there any reason you don't want to be tested? If not, do it now while you are still eating gluten so you'll have an accurate test result (or as accurate as the current tests can be).

At this point I'm pretty much not eating gluten, just the very occasional bit, and I truly can't even fathom the thought of having to eat a lot for multiple months to get the test.

[giggleburger]

To everyone else:

I hadn't realized there was so much possibility of issues even if you don't have celiac's. I thought I had done a lot of research on this stuff, how did I miss so much important stuff?!

And thanks to so many of you responding. =] I really only know anyone with celiac's through multiple people. And no one in my family has any issue similar to this (that they know of, I suppose). So thanks for all of your advice.

Seeing that there are strong possibilities to be more than just sensitive is a little unnerving, but I don't think I could bring myself to eat enough gluten for long enough to get tested to be sure. As I said (and this was partly about) I do sometimes eat gluten, but not as much as I'd need to be tested. But since it is possible... I guess I need to step up my game and stop slacking.

[cavernio]

I imagine if I were in your shoes each day (or each hour even) I'd firmly decide to eat or not eat gluten. It's a very hard place to be in. I expect at some low point in your almost-gluten-free life it'll hit you that cheating isn't worth it. I just hope it hits you sooner rather than later.

I'm actually very glad I never tried to go gluten free on my own before getting tested. Rather, I did for about 2 days before I realized how impossible that would be and I'm just torturing myself and I'd occasionaly cheat ruining the whole experience . But I'm also really glad I didn't try on my own because I'm far from healed and it's been 7 months and even if I had been super strict I may have concluded that I don't have celiac disease 3 months in.