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Is Gluten Intolerance Forever?

danikali

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danikali Enthusiast
danikali
Posted

Hi guys,

I just have a question. Now, I know if you have celiac disease, or even the gene for it, then gluten is something you need to stay away from FOREVER. Well, I am waiting for my results on the gene test by Dr. Green, just to see if I have the actual Celiac gene. I already know that I am severely intolerant to gluten from diet results and from enterolab, but my question is, once my gut is healed after being off of the "bad" foods for a few years, then am I allowed to have gluten again, at least sporadically?

I honestly don't care either way, but I'm just wondering. Have any of you heard any stories of people who were able to eat it again. For example, a lot of Celiacs can't have dairy until their gut is healed, and eventually, they notice they are no longer intolerant to it. Soooo, can the same thing happen with gluten for people that have gluten intolerance?

What do you think? Or have read?

I read Dangerous Grains, but I don't remember if it says it in there.........

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redheadheather Explorer
redheadheather
Posted

No - you can't have it again. Celiac is what damanged your gut - and will begin to damage it again if you being eating it again. That's my understanding anyway.

danikali Enthusiast
danikali
Posted
  • Author
No - you can't have it again. Celiac is what damanged your gut - and will begin to damage it again if you being eating it again. That's my understanding anyway.

I know that for Celiac disease, which is only a specific kind of gluten intolerance, you can never have it again. But what if I don't have the actual Celiac gene and I just have gluten sensitivity......does that mean that it's a whole different story and it will eventually go away?

nikki-uk Enthusiast
nikki-uk
Posted

I don't think 'gluten sensitivity' (as opposed to 'coeliac disease')evers goes away.

From what I've read on these boards there are plenty who don't have the classic markers for coeliac(Dq2 +8)but know that they feel terrible when they eat gluten.

I'm sure there are others who can advise you better(Rachel-24 for instance!)-but even though they are classed as 'gluten intolerant'-it's still affects them just as much.

If you know gluten doesn't sit well with you ,then don't have it.

It's possible your gene test will show you don't carry the 'known' genes that cause coeliac-

but I believe that the medics haven't yet found all the gene markers for celiac disease and associated problems.

Good luck :)

tarnalberry Community Regular
tarnalberry
Posted
I know that for Celiac disease, which is only a specific kind of gluten intolerance, you can never have it again. But what if I don't have the actual Celiac gene and I just have gluten sensitivity......does that mean that it's a whole different story and it will eventually go away?

I don't think that enough research has been done to give you a conclusive, scientific, evidence based answer on that. So, really, the answer is "no one knows for sure". But chances are, if it operates in a similar fashion to celiac disease, then yes. Once that gene's "turned on" and starts being expressed, it doesn't get turned off. That'd be great (and a line of research I hope they get into more thoroughly), but it's not the case. If you go back to eating gluten, you may find you *do* start to get damage.

danikali Enthusiast
danikali
Posted
  • Author
I don't think that enough research has been done to give you a conclusive, scientific, evidence based answer on that. So, really, the answer is "no one knows for sure". But chances are, if it operates in a similar fashion to celiac disease, then yes. Once that gene's "turned on" and starts being expressed, it doesn't get turned off. That'd be great (and a line of research I hope they get into more thoroughly), but it's not the case. If you go back to eating gluten, you may find you *do* start to get damage.

I think you're right Tiffany. Honestly, even if I could have it again as a "maybe" I still don't think I would ever touch the stuff again. I'm feeling so good these days, I would be scared of the person I would become eating that crap again! Not only do I feel more healthy and energized (with many symptoms clearing up, rapidly), I am the person I want to be again! I'm in a good mood almost all of the time these days and I don't have such a short temper anymore. And I get up before the alarm clock every morning, really excited for the day! (without coffee, mind you)

It was just something I was thinking about because my Mom used to have horrible problems with her bladder and couldn't have ANY alcohol, coffee, or acid of any kind, natural or not. But now she can in moderation...........

But like you said, since gluten sensitivity and celiac disease are so closely related, and you can never have gluten again with Celiac, then more than likely, same goes for sensitivity without villi damage.

lonewolf Collaborator
lonewolf
Posted

I'm waiting for the results of my gene test too, like waiting for the phone to ring any minute. I was told almost 10 years ago that my allergy or intolerance to wheat/gluten would go away if I avoided it for long enough. (No one thought to test me for Celiac - surprise!) I think they were wrong. I have asked the same question here and I think that no one really knows - the research hasn't been done because there's no money in it. I've pretty much decided that no matter how my test results turn out that I'm going to avoid gluten forever - it's not worth taking a chance on getting as sick and unhealthy as I once was.

Liz

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jenvan Collaborator
jenvan
Posted

I second what Tiffany said :)

PS Tiffany--you are hoping to do research related to that? that would be great...I'd be very curious...

tarnalberry Community Regular
tarnalberry
Posted
PS Tiffany--you are hoping to do research related to that? that would be great...I'd be very curious...

Hahaha! No, I switched from bio to physics, so no bio research for me. I just think it'd be cool if "they" did that kind of research. Perhaps in a decade or so, when more gene therapy research has been done. It just seems to me a better way to go than pills that interact with the gluten.

Guest schmenge
Guest schmenge
Posted

My Grandmother had Celiac and she would get the severe cramping and discomfort many epxerience when she got glutened. However late in life (I think she was in her mid 80's) she found that she could tolerate small amounts of wheat in her diet without any symptoms. She still had the disease, and it probably was not good for her, but at 85 or so she didn't care.

danikali Enthusiast
danikali
Posted
  • Author
My Grandmother had Celiac and she would get the severe cramping and discomfort many epxerience when she got glutened. However late in life (I think she was in her mid 80's) she found that she could tolerate small amounts of wheat in her diet without any symptoms. She still had the disease, and it probably was not good for her, but at 85 or so she didn't care.

Hm....well, true about her being older and "living a little" with the gluten. Probably being off of it for a while, it would take a lot for the symptoms and all of the damage to come back again.

julie5914 Contributor
julie5914
Posted

Well the writer of the recent WSJ article on celiac told me that he had his diagnosis reversed for celiac earlier in his life. So I don't necessarily think this is a gluten-intolerance or celiac going away, but it sounded more like somehow he was misdiagnosed in the first place. The place that reversed his diagnosis was a center for celiac, so I supposed they knew what they were doing. My thoughts were that if he was off gluten for a long time and they did a biopsy then yeah, they may not see damage, but I don't think a center for celiac would reverse a diagnosis for that because they know better. He says he went back on gluten without consequence.

Guest schmenge
Guest schmenge
Posted
Hm....well, true about her being older and "living a little" with the gluten. Probably being off of it for a while, it would take a lot for the symptoms and all of the damage to come back again.

As I recall she was diagnosed sometime in her early 50's or late 40's, so she had a lot of gluten-free years!

danikali Enthusiast
danikali
Posted
  • Author

Julie, that's interesting that he said he was "cured"......hm.....I kind of find it weird though that he went to a celiac center and they told him he was "cured." I agree with you thinking that he got the wrong diagnosis in the first place, but I'm wondering what else that could be. Because all of the other diseases similar to Celiac are not curable either, are they? They're all supposed to be forever..

Interesting though!

And now that I think about it, schmenge (is that your name?-sorry if I spelled wrong), maybe I'll eat a tiny bit of gluten when I'm that age too. But until then, no way!

Claire Collaborator
Claire
Posted

There is a lot of research info on the internet that claims gluten sensitivity and celiac to both be lifelong conditions. I personally consider these to be two sides of the same coin - very subjective.

I do not have celiac. I have not yet been tested for gluten sensitivity. I do have a diagnosis of Type II, Delayed Food Reaction to wheat, barley and rye (all gluten saturated grains) and a bunch of other things.. I have never been able to reintoduce the grains - even after years of abstinence. I could eat a cookie or something small that had no yeast but any attempt at bread, pie crust, pasta, etc. was always probematic.

I do not believe this is something that gets 'cured'. Genetic is genetic - it is a permanent condition.

The dairy issue is something different and certainly some people can reintroduce dairy after the intestinal issues are healed. If it is a casein issue that may not happen. Claire

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      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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