Just Cant Help Myself....

[Janey]

Hello everyone, I am not celiac but I am gluten wheat intolerant. I know that my condition is nowhere near as serious as anyone on here with Celiac, but I am still struggling with the whole gluten free diet thing...... I know what to do and how to do it BUT its almost like I'm self harming because any opportunity I get, I'm shovelling in the gluten filled foods faster that I can stop myself then go on a huge downer because ive been so stupid and end up feeling ill and unable to work... If I do continue to do this to myself what could happen to me? I know its pretty life threatening, or it can be, for a celiac to eat gluten but it cant be that bad for me? Right???

[NoGlutenCooties]

Janey -

 

I was recently diagnosed with gluten intolerance and did not have any obvious symptoms - but it does run in my family.  Eating gluten when you have gluten intolerance has been scientifically linked to diabetes, thyroid problems, severe skin problems, certain kinds of cancer, hair loss, osteoperosis, and a long list of other ailments.  So yes, it really can be THAT bad for you.  Consider yourself very lucky that you don't have serious symptoms yet.  But if you continue to eat gluten, you're highly likely to develop serious symptoms over time.  If you're getting cravings for carbs, you may not be getting enough carbs in your diet - which you can do without eating gluten.  If you do a Google search for "gluten free carbs" you can find a lot of good alternatives.  Carbs also get converted to sugar quickly in your body, so you may be going through sugar-withdrawal more than gluten-withdrawal.

 

Good luck.

[kareng]

Eating gluten when you have gluten intolerance has been scientifically linked to diabetes, thyroid problems, severe skin problems, certain kinds of cancer, hair loss, osteoperosis, and a long list of other ailments. So yes, it really can be THAT bad for you. Consider yourself very lucky that you don't have serious symptoms yet. But if you continue to eat gluten, you're highly likely to develop serious symptoms over time.

Actually....all those are for people with Celiac Disease. The OP says she doesn't have celiac Disease. There isn't a lot of research on non- celiac Gluten Sensitivity. But, because it doesn't cause villi damage, at least some of those probably aren't problems from NCGS.

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[w8in4dave]

I was wondering that myself..... Because most of the symptoms mentioned "Most" I have but I am Celiac. So I was wondering about that. 

[mommy2krj]

Hello everyone, I am not celiac but I am gluten wheat intolerant. I know that my condition is nowhere near as serious as anyone on here with Celiac, but I am still struggling with the whole gluten free diet thing...... I know what to do and how to do it BUT its almost like I'm self harming because any opportunity I get, I'm shovelling in the gluten filled foods faster that I can stop myself then go on a huge downer because ive been so stupid and end up feeling ill and unable to work... If I do continue to do this to myself what could happen to me? I know its pretty life threatening, or it can be, for a celiac to eat gluten but it cant be that bad for me? Right???

I guess you just have to ask yourself if it's worth it. Is it worth it to you to eat the stuff with gluten in it and then get sick and miss work? Is it worth it to eat it and then feel terrible about yourself because you know you ate something that makes you sick?

Believe me, I understand. My youngest child was diagnosed with Celiac. My oldest son tested negative but he is most definitely intolerant at the very least. I went gluten free to help my 6 year old not feel so alone with this diet (actually, we made the whole house gluten free) and discovered that I feel better not eating gluten. It is hard though. The sticker shock alone is enough to do me in sometimes. I'm trying very hard to feed a family of 5 gluten free with two very picky teenagers. My teenage son has been pretty open but my oldest, well, she simply no longer eats much at home....which isn't good either since her diet now consists of McD's or Taco Bell.

Every once in a while I will get something that isn't gluten free. I don't have stomach issues from gluten, for the most part. Mainly it's the brain fog, migraines and joint pain. But I am finding that the longer it is between eating things with gluten in them...the worse they taste. But it does definitely take will power at first. That's why we replaced as much as we could at first with the packaged gluten-free stuff. Just to help transition. Didn't eat bread for quite a while. Now the gluten-free bread actually tastes pretty good, though the texture still isn't quite the same. I'm baking more stuff at home and we've definitely increased our veggie intake.

Hugs to you. It is a dramatic change in your life. Those are always hard. It will get easier. You just have to decide you don't want to feel sick anymore.

[notme]

Hello everyone, I am not celiac but I am gluten wheat intolerant. I know that my condition is nowhere near as serious as anyone on here with Celiac, but I am still struggling with the whole gluten free diet thing...... I know what to do and how to do it BUT its almost like I'm self harming because any opportunity I get, I'm shovelling in the gluten filled foods faster that I can stop myself then go on a huge downer because ive been so stupid and end up feeling ill and unable to work... If I do continue to do this to myself what could happen to me? I know its pretty life threatening, or it can be, for a celiac to eat gluten but it cant be that bad for me? Right???

would it make a difference if you were celiac?  meaning, would you be better at being strictly gluten free if you knew it was doing *permanent* damage?   how long have you been eating gluten free and have you actually gotten all of the gluten out of your system and felt dramatically better?  if you keep glutening yourself, you won't know what the 'reward' <feeling good!  like a normal human) feels like.  did your doctor say it was intolerance or allergy and is it just wheat or all gluten?  (what were you tested for?) 

[answerseeker]

Well you won't get damage to your intestines, therefore you won't suffer the nutritional deficiencies and all that goes with celiac. However, like Karen said little research has been done on non celiac gluten sensitivity and who knows if it creates any inflammation. Chronic inflammation in the body is not good and can have consequences.

[NoGlutenCooties]

Actually....all those are for people with Celiac Disease. The OP says she doesn't have celiac Disease. There isn't a lot of research on non- celiac Gluten Sensitivity. But, because it doesn't cause villi damage, at least some of those probably aren't problems from NCGS.

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Good point KarenG - I look at gluten intolerance/sensitivity as the precursor to Celiac Disease.  Similar to hypoglycemia being the precursor for diabetes.  If you nip the precursor, you don't get the next stage of the disease.  So as a gluten interant person, if you avoid gluten then you avoid the disorder evolving into the next stage - which is Celiac Disease - so you avoid the various disorders that can come with it.

[GF Lover]

Good point KarenG - I look at gluten intolerance/sensitivity as the precursor to Celiac Disease.  Similar to hypoglycemia being the precursor for diabetes.  If you nip the precursor, you don't get the next stage of the disease.  So as a gluten interant person, if you avoid gluten then you avoid the disorder evolving into the next stage - which is Celiac Disease - so you avoid the various disorders that can come with it.

Just to clarify.  Being intolerant to a food does not mean it is a precursor to Celiac, nor does it mean it will evolve to Celiac Disease.  Celiac Disease is an Autoimmune Condition.  Gluten Intolerance is not.

 

Colleen

[Janey]

Thank you everyone, for the kick up the backside that I needed..... notme! I have been tested several times for celiac by my DR. I was positive, then I wasn't, was, and then finally wasn't!!!  My DR was very blasé about the whole thing to be honest and has now given up with me and put it down to IBS I was never told to continue eating gluten throughout my tests and only learnt this from forums that I joined so the whole process (in my eyes) was pretty hit and miss. I was seen by a specialist before I saw my DR and he said I did not have celiac but I was gluten/wheat intolerant. This was 3 years ago and my symptoms are getting more obvious and with more severe symptoms. I'm an idiot I know..... 

[notme]

ugh - sorry to hear about the whole doctor thing, then.  i wish testing was easier/more definitive...  i am constantly worried that people are not ruling out other conditions which have similar symptoms.   i am also 3 years gluten-free and my quality of life has gone up tremendously!  so, it's worth it to be uber careful   have you read the newbie 101 thread - lots of good info/tricks, etc that make resisting temptation and keeping your food safe.  once you have eliminated gluten completely (NO CHEATSIES) you should be able to notice improvement.  think of feeling good as your 'carrot on a stick'  <also carrots are gluten free, so there's that lolz probably the stick, too    good luck!

[Janey]

No, I haven't notme! I will have a look now thanks :0)

[NoGlutenCooties]

Just to clarify.  Being intolerant to a food does not mean it is a precursor to Celiac, nor does it mean it will evolve to Celiac Disease.  Celiac Disease is an Autoimmune Condition.  Gluten Intolerance is not.

 

Colleen

 

Actually... it depends on which doctors and which research you believe.  Some believe the two are linked - others are waiting for confirming additional research.  No, having gluten sensivity does not mean that you are guaranteed to get Celiac Disease.  And some people get Celiac Disease without having any symptoms of gluten sensitivity first.  But there is evidence that if you continue to eat gluten even though you have a gluten sensivity, it can lead to Celiac. 

[GF Lover]

It would be great if you would post a link to the "evidence" research.

 

Colleen

[notme]

No, I haven't notme! I will have a look now thanks :0)

it's on the 'coping with' section - i would post a link but i'm on my husband's notebook and i keep messing it up (lolz - this thing is lucky it hasn't hit the wall yet hahaha)  definitely worth the read, and probably many things doctors can't tell you because they don't know  mine just told me 'congratulations.  you have celiac.  eat a gluten-free diet and GOOD LUCK'  i said how do i do that.................  'just don't eat gluten'  DAH !  and the last time i went to my gp, he told me he refers his patients to 'that celiac website'  if they want to know anything about gluten-free diet   

[NoGlutenCooties]

It would be great if you would post a link to the "evidence" research.

 

Colleen

 

This is what I could find at my finger-tips.  I'm sure there's more out there.

 

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“It's not clear yet whether gluten sensitivity raises your risk for other conditions, including autoimmune conditions — some researchers believe that it does, and others say it does not.”

(and of course, Celiac is an autoimmune condition)

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“Some studies show that some gluten-sensitive people have similar metabolic profiles to diagnosed celiacs, indicating that there might be a pre-celiac condition.”

“More research will be needed to determine if people with gluten sensitivity really can ingest small amounts of gluten without damage, or if a specific sub-group of gluten-sensitives will eventually go on to develop celiac disease.”

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Also, keep in mind that a person can have Celiac even if a biopsy comes back negative - the tests aren't particularly accurate.  So while you may think you "only" have a sensitivity, that may not be the case.

[kareng]

  But there is evidence that if you continue to eat gluten even though you have a gluten sensivity, it can lead to Celiac. 

 

 

Wow!  Which session at ICDS did you hear that in?  I missed that one.  What I heard, several times is that they aren't really sure there even is such a thing as NCGS.  This isn't meant to discount the fact that some non Celiacs are helped by a gluten-free diet.  They just don't have enough research on this.  Here are a few reasons for NCGS they are kicking around and have some preliminary study findings:

 

1.  Its actually a FODMAP issue.  Because wheat is a high FODMAP food, eliminating it makes them feel better.  When they added gluten back in, but kept total FODMAPs low, people still felt good.

 

2.  Its bad diagnosing - which may be the OP's actual issue.  This would also explain why someone who supposedly tested negative for Celiac would be positive in a few years.

 

3.  It could be a reaction to a different protein in wheat that they haven't really studied yet.

 

4.  Some other thing they haven't found yet.

 

I didn't hear anyone say that NCGS, if it is really not Celiac,  leads to Celiac Disease.

 

 

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[NoGlutenCooties]

This site also mentions that if you do not have the Celiac gene marker, then you cannot get Celiac – but you can still have Gluten Sensitivity.  However, they do not have enough information to know for sure if someone with Gluten Sensitivity and the gene marker will get – or is more likely to get – Celiac.

 

If I have non-celiac gluten sensitivity now, does that mean I would develop celiac disease if I continued to eat gluten?

We really don't have data to answer that. Once we know exactly what triggers non-celiac gluten sensitivity, we'll be able to answer that question. A helpful thing however would be to get tested for the celiac genes: if absent - while you certainly may still be gluten sensitive - you won't stand a chance of becoming celiac.

 

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[answerseeker]

Wow! Which session at ICDS did you hear that in? I missed that one. What I heard, several times is that they aren't really sure there even is such a thing as NCGS. This isn't meant to discount the fact that some non Celiacs are helped by a gluten-free diet. They just don't have enough research on this. Here are a few reasons for NCGS they are kicking around and have some preliminary study findings:

1. Its actually a FODMAP issue. Because wheat is a high FODMAP food, eliminating it makes them feel better. When they added gluten back in, but kept total FODMAPs low, people still felt good.

2. Its bad diagnosing - which may be the OP's actual issue. This would also explain why someone who supposedly tested negative for Celiac would be positive in a few years.

3. It could be a reaction to a different protein in wheat that they haven't really studied yet.

4. Some other thing they haven't found yet.

I didn't hear anyone say that NCGS, if it is really not Celiac, leads to Celiac Disease.

That makes a lot of sense. I don't see how NCGS could "lead" to celiac. And if that were the case I would think NCGS would eventually have malabsorption issues which is not the case. I think the bad diagnosing is the best explanation so far on this issue.

[answerseeker]

I have a friend who tested negative for Celiac, yet several members of her family have it. She gets the stomach pain and several other symptoms after eating gluten. It will be interesting to watch her progression and see if she ends up testing positive

[kareng]

This site also mentions that if you do not have the Celiac gene marker, then you cannot get Celiac – but you can still have Gluten Sensitivity.  However, they do not have enough information to know for sure if someone with Gluten Sensitivity and the gene marker will get – or is more likely to get – Celiac.

 

If I have non-celiac gluten sensitivity now, does that mean I would develop celiac disease if I continued to eat gluten?

We really don't have data to answer that. Once we know exactly what triggers non-celiac gluten sensitivity, we'll be able to answer that question. A helpful thing however would be to get tested for the celiac genes: if absent - while you certainly may still be gluten sensitive - you won't stand a chance of becoming celiac.

 

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Looks like we agree.  We can't say that NCGS leads to Celiac.

[kareng]

Thank you everyone, for the kick up the backside that I needed..... notme! I have been tested several times for celiac by my DR. I was positive, then I wasn't, was, and then finally wasn't!!!  My DR was very blasé about the whole thing to be honest and has now given up with me and put it down to IBS I was never told to continue eating gluten throughout my tests and only learnt this from forums that I joined so the whole process (in my eyes) was pretty hit and miss. I was seen by a specialist before I saw my DR and he said I did not have celiac but I was gluten/wheat intolerant. This was 3 years ago and my symptoms are getting more obvious and with more severe symptoms. I'm an idiot I know..... 

 

 

Can you get copies of all those tests?  If you were gluten free during the time some of these were taken, they would be negative or lower than they would be on a full gluten diet.  I wonder if you actually have Celiac and a bad doctor.  If you are eating gluten free now, you would have to go back on gluten to get tested and find a new doctor.  At this point, you can just continue to eat gluten-free and assume you have Celiac - you did have positive blood work.  Something to think about.

 

the researchers are hoping to find a way to test for Celiac that doesn't require eating gluten at the time or eating it for only a short time.  But they didn't sound like that would happen any time soon. 

[NoGlutenCooties]

So Celiac is an immune response that causes damage to the villi.  But you can have Celiac but get a false-negative diagnosis because there isn't damage (or enough damage) to the villi... yet.

So you get diagnosed with gluten sensitivity.

But if you actually have undiagnosed Celiac, and you continue to eat gluten, then you are more likely to eventually have enough damage to get a correct diagnosis.

Therefore you have now gone from gluten sensitivity to Celiac.

But if you have gluten sensitivity and you stop eating gluten - you will never develop Celiac.

[kareng]

So Celiac is an immune response that causes damage to the villi.  But you can have Celiac but get a false-negative diagnosis because there isn't damage (or enough damage) to the villi... yet.

So you get diagnosed with gluten sensitivity.

But if you actually have undiagnosed Celiac, and you continue to eat gluten, then you are more likely to eventually have enough damage to get a correct diagnosis.

Therefore you have now gone from gluten sensitivity to Celiac.

But if you have gluten sensitivity and you stop eating gluten - you will never develop Celiac.

co

 

Mis- diagnosis was in the list I mentioned. And, because 30% of the population has the genes for Celiac, I guess that could figure into the odds. However, we can't ignore the other reasons a person might appear to have NCGS. In their cases, eating gluten won't give them celiac and may not even be the actual " cure".

And in this posters case, a missed diagnosis may be her issue. No need to argue. You are able to read the newest studies presented last month by experts.

[NoGlutenCooties]

<<  In their cases, eating gluten won't give them celiac and may not even be the actual " cure".>>

 

Absolutely correct.

 

 

<< No need to argue. >>

 

I hope you didn't take my setting the record straight as an argument.  It is important that people who have reason to believe they have gluten sensitivity understand the risks of ignoring it - whether it turns out to be remedied by not eating gluten or not.  I think there is a tendency to sit back and wait for the doctor to tell you what you should do, shouldn't do, etc. - and you really do have to be your own advocate.  Some doctors still don't believe that gluten sensitivity exists.  Many will tell you that you tested negative on a blood test because your number was under 11 - and that's all they tell you.  They don't tell you that if you do have gluten sensitivity/intolerence that the number will go up.  They'll just give you the "positive" blood test results the following year when your number jumps to 18 and now you're starting to do damage to your body.

I had hypoglycemia when I was younger.  I actually had a doctor tell me there was nothing they or I could do - "come back when you have diabetes and we can talk about insulin options"  !!  Good thing I didn't listen to them.  I now do not have either hypoglycemia or diabetes... no thanks to him.