All Or Nothing?

[JenM]

I have ataxia, and I was tested for Celiac through Prometheus labs. The tests came back negative, but I still wonder if a gluten-free diet might help me with my shaking and balance, and the swishing sound that I have in my left ear. Would cutting back on glutenous foods be helpful, or would I need to be strict about a completely gluten-free diet? Thanks.

[Carriefaith]

I would go 100% gluten free. Any amount of gluten would probably cause damage and prevent you from getting better.

[KaitiUSA]

Definitely go 100% gluten free as if you had celiac.

[frenchiemama]

I agree. 100% gluten-free.

[celiac3270]

If you get "glutened" once a month, it's the equivalent of not following the diet at all--you need to go all in.

[Lisa]

100%

[JenM]

Thanks for all your help and input. I'm thinking that since the bloodwork was negative for Celiac, maybe I have just a sensitivity. Does the advice to go 100% gluten-free still apply?

[KaitiUSA]

Thanks for all your help and input.  I'm thinking that since the bloodwork was negative for Celiac, maybe I have just a sensitivity.  Does the advice to go 100% gluten-free still apply?

<{POST_SNAPBACK}>

Yes, because if you have a gluten sensitivity and continue to eat gluten it can turn into celiac.

[JenM]

Yes, because if you have a gluten sensitivity and continue to eat gluten it can turn into celiac.

<{POST_SNAPBACK}>

Thanks, Kaiti. I didn't know that.

[MySuicidalTurtle]

Where did you learn that, Kaiti? It doesn't make sense.

The only way to stop problems caused by gluten is to be 100% gluten-free.

[skbird]

You can be gluten intolerant and not have Celiac but have other autoimmune diseases occur as well - if gluten is damaging to your system, then you need to not consume it. Celiac is bad but it's not the only bad thing out there. Even gluten intolerance of the generic sort is bad enough. If you have ataxia and there is a chance it is related to gluten, you may be able to reverse some of the damage by going gluten free 100%.

Another thing you should look into is supplementing with B12. Sublingual tablets have been proven to be just as effective as injections in most cases.

Take care

Stephanie

[Carriefaith]

To prevent your ataxia from getting worse you must be 100% gluten free. The gluten free diet is intimidating at first, but it gets easier with time. If you need meal ideas, please ask!

[KaitiUSA]

Where did you learn that, Kaiti?  It doesn't make sense.

The only way to stop problems caused by gluten is to be 100% gluten-free.

<{POST_SNAPBACK}>

My doctor (very knowledgeable in celiac disease) and I were talking about celiac...I scheduled and appointment just so I could talk to him about info because of some things I am working on. Anyways, he told me that if you are intolerant to gluten and your body is bothered when you eat it but you continue to eat it then it can turn into celiac(if you have one of the genes). When you feed your body something it does not agree with then you slowly tear your system down. He said your body basically says "Enough, I can't take this anymore" and starts to do the damage.

That's just what I was told...makes sense to me.

I know there has been debate of if gluten intolerance can turn into celiac especially without genetic predisposition and I personally think it is possible if the diet is just ignored.

[Carriefaith]

That description makes sense, especially if the person has the gene for celiac.

[MySuicidalTurtle]

While it makes a little sense but not really, I am more on the line that without the gene it cannot turn into Celiacs. People who don't have the gene can't be considered having this disease. I do think it is very unhealthy to consume gluten if it does damage to you, Celiac or not, and would further harm your body but as of the research yet I don't think it would develop into Celiacs Disease.

[KaitiUSA]

While it makes a little sense but not really, I am more on the line that without the gene it cannot turn into Celiacs.  People who don't have the gene can't be considered having this disease.  I do think it is very unhealthy to consume gluten if it does damage to you, Celiac or not, and would further harm your body but as of the research yet I don't think it would develop into Celiacs Disease.

<{POST_SNAPBACK}>

It would be very likely to turn to celiac if you have the gene though.

Maybe thats something worth looking into for the original poster to see if she is predisposed to it because most people do have one of the main genes.

However, I would be very interested in knowing if there are diagnosed celiacs without the gene.

[Carriefaith]

However, I would be very interested in knowing if there are diagnosed celiacs without the gene.

same here

[MySuicidalTurtle]

I do remember people, or one person, posting here after doing the test for the genes and saying since they did not have the gene they did not have Celiacs so they are just gluten intolerant.

[skbird]

Rachel-24 does not have the Celiac gene but had high antibodies and malabsorption. I don't know the result of her endoscopy but she has DQ1 and from her test results sounds Celiac.

Then again there is info coming out that DQ1 might soon be considered a Celiac gene. There is also info that some 1% of Celiacs don't have either of the two accepted genes (DQ2 and 8).

Stephanie

[KaitiUSA]

Rachel-24 does not have the Celiac gene but had high antibodies and malabsorption. I don't know the result of her endoscopy but she has DQ1 and from her test results sounds Celiac.

Then again there is info coming out that DQ1 might soon be considered a Celiac gene. There is also info that some 1% of Celiacs don't have either of the two accepted genes (DQ2 and 8).

Stephanie

<{POST_SNAPBACK}>

Yea about 1% have the DQ1 gene I believe I heard...so a strong majority have one of the 2 main genes but a very small portion do not.

[Carriefaith]

Actually, I just remembered that there will be new research being done on genes and celiac disease in England. They are offering research for potential phd students. "Over 500,000 genetic markers will be genotyped in each of several thousand individuals using array based technology." Open Original Shared Link

[celiac3270]

I've talked to a number of doctors about gluten intolerance, though, and they have all told me (including Dr. Levy at the Celiac Center at Columbia) that gluten intolerance is like lactose intolerance in that you can consume whatever you can tolerate--for some that may be almost none, for others it might be a little bit. And gluten intolerance disregarded won't lead to full-blown celiac, just as lactose intolerance disregarded won't lead to a full-blown milk allergy--you may feel bad, but nothing damaging will actually take place.

[skoki-mom]

I've talked to a number of doctors about gluten intolerance, though, and they have all told me (including Dr. Levy at the Celiac Center at Columbia) that gluten intolerance is like lactose intolerance in that you can consume whatever you can tolerate--for some that may be almost none, for others it might be a little bit.  And gluten intolerance disregarded won't lead to full-blown celiac, just as lactose intolerance disregarded won't lead to a full-blown milk allergy--you may feel bad, but nothing damaging will actually take place.

<{POST_SNAPBACK}>

This is the sort of thing my nurse's brain has been telling me as well. It just doesn't make sense that an intoerance can turn into celiac disease. That to me sounds like saying if you eat too much sugar you will get diabetes (my mother used to tell me that as a child!). However, I am certainly no expert on this, but the explanation your doctors gave you does make more sense to me.

[KaitiUSA]

I've talked to a number of doctors about gluten intolerance, though, and they have all told me (including Dr. Levy at the Celiac Center at Columbia) that gluten intolerance is like lactose intolerance in that you can consume whatever you can tolerate--for some that may be almost none, for others it might be a little bit.  And gluten intolerance disregarded won't lead to full-blown celiac, just as lactose intolerance disregarded won't lead to a full-blown milk allergy--you may feel bad, but nothing damaging will actually take place.

<{POST_SNAPBACK}>

I don't know which one is true but I have heard some of each. My doctor has told me that genetically predisposed people can develop celiac if they have a sensitivity but ignore it...then I see what your doctors have told you so it's quite difficult to know what is true.

If someone is already predisposed to celiac though I would think it could turn into celiac if they are experiencing symptoms when eating gluten and ignoring it.

They say the main genes are DQ2 and DQ8 however that is only for about 98% of the people.Not all 100% of celiacs have those genes and are confirmed celiacs.

I know Rachel-24 had her results come back with malabsorption and damage..however, she does not have one of the main celiac genes...she could be one of the small # of people that have celiac without one of the major genes.

Or can just gluten intolerance cause damage? Now that would not make sense because the defining point in celiac is the damage that it does.

Now, if a gene test comes back negative then it is not likely it can ever become celiac because there is a link with the genetics but that can not be 100% accurate since a very tiny majority do not have either gene. Unless there is another main celiac gene that they need to be testing for..I believe the small majority that have neither of the main genes have the DQ1 gene...so why isn't that being tested for as a celiac gene.

It doesn't make sense that making yourself feel bad over and over would not lead to some more serious problems. I don't buy it when people say o it just makes me feel bad but nothing else will happen...I think something worse will happen if you ignore your body...that's just my opinion though.

[Guest nini]

Kaiti, as always, I 100% agree with what you are saying.