Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is Gluten Intolerance Forever?


danikali

Recommended Posts

danikali Enthusiast

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.........


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



redheadheather Explorer

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
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

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
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
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

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jenvan Collaborator

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
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

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
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

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
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

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

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,758
    • Most Online (within 30 mins)
      7,748

    floridajfs
    Newest Member
    floridajfs
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • MagsM
      Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done. Do you think I should request Vitamin B shots to get me started?  My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like? I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those? I’m curious if you managed to go into full remission from your Ménière’s disease? Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond. 
    • Scott Adams
      You are right! The logo the have on their packages got me confused--it looks like they are less than 20ppm, not certified GF. Thanks for catching that! My brain also zeroed in on this "less than 10ppm" but I should have seen the rest...
    • Wheatwacked
      Zinc glyconate lozenges (Cold Eeze) helps fight off viral respiratory infections by coating the mucous membrane cells to protect them from virus.  Zinc is an antiviral essential mineral. Choline deficieicy can be the cause of Non Alcoholic Fatty Liver Disease.  It is estimated by some experts that less than 10% eat the minimum RDA of around 450 mg.  It has also been connected to gallbladder disease.  Brain fog and high homosystein blood level is an independant indicator of cardiovascular disease. Eggs and red meat are the primary sources.  Three eggs or 10 cups of cooked brocolli a day.  Low vitamin D is a common denominator of autoimmune disease.  Is it a contributing factor or a result? I think that low vitamin D is maybe the main contributing factor.  Low vitamin D allows the immune system to run amuck. I would like to point out the many diagnosed with Celiac Disease went through several misdiagnoses, like gall bladder disease, and were repeatedly tested negative and then one day tested positive. Regardless of your diagnosis, you should avoid gluten, you mention it in your first post : "When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal". It can take six months to several years to heal completely.  How long I believe is directly related to how quickly you identify deficiencies and correct. Essential to my recovery:  Thiamine, 10,000 IU vitamin D3 a day, maintaining 25(OH)D at 80 ng/dl (200 nmole/L), 600 mcg Liquid Iodine, Phosphatidyl Choline.  And of course: Gluten Free.
    • RMJ
      Not all of King Arthur’s gluten free flours and baking mixes are certified gluten free. This bread flour is not. 
    • knitty kitty
      Bump up your thiamine dose!  You can take more if you don't feel anything after the first one.  Must needs getting to that 500mg. We need more thiamine when we're fighting an infection.  Zinc will help fight infections, too, as well as Vitamin C. They all work together. Hope you feel better!
×
×
  • Create New...