Jump to content

  • 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

Going Back To Gluten?

seattlecdfriend

Recommended Posts

seattlecdfriend Rookie
seattlecdfriend
Posted

Has anyone out there gone gluten-free long enough to be fully recovered from it and then gone back in a limited fashion and been ok? :huh: I know this goes against nearly everything- well actually everything I have read, but there is a Dr. here in Seattle who has made the statement that no one actually knows whether you could have gluten in minimal amounts. The way to do that would be with regular testing and monitoring...He also has talked about the how differently celiac disease can present in different people and possibly not everyone needs to go totally gluten-free lifetime.

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

Celiac.com Sponsor (A8-M):


AmandaD Community Regular
AmandaD
Posted

I suppose it's plausible. But I'm biopsy diagnosed and my gastro said they have a "zero" tolerance policy for gluten (she's even wary of the gluten-free oats???) so until I hear from her I can't have any gluten ever again...

tummytroubles Newbie
tummytroubles
Posted

For a person with celiac, no gluten should be consumed because even tiny amounts cause problems.

However, for a person with gluten intolerance and NOT celiac, I have heard of people that are able to get their digestive systems healed up enough to eventually have small amounts of the foods that they used to be intolerant to. This may include gluten. I think it has to do with the idea of having a "leaky gut" caused by an imbalance of good vs. bad bacteria in the digestive system, the use of NSAIDS (like Advil, etc.), and other things. The leaky gut leaves holes where undigested food can "leak" out and the body starts attacking it causing inflammation, pain, and other problems.

par18 Apprentice
par18
Posted

I'm sure if one searches or inquires long enough they will find just about any situation possible concerning the reaction different people have with gluten. If what you are ultimately asking is whether "anyone" has outgrown or been "cured" of Celiac Disease or gluten intolerance then I have yet to see or hear of this happening. Everyday I am sure all over the world people are constantly going on and off the gluten-free diet just to see what happens. If a person had severe enough symptoms and went on the diet and "fully" recovered then in my opinion they would be an "glutton" for punishment to start testing themselves again just to see what would happen. However we are all different and thus nothing should surprise me. Good luck in your quest. In case you were wondering no I have not intentionally tried gluten after I recovered. I am content to leave well enough alone.

Tom

JayT Rookie
JayT
Posted

Many people have different tolerances when it comes to ingesting gluten. I think it is better to avoid it completely than to chance things. It is just not worth getting sick!!

Also, even if some people can eat small amounts with no immediate physical reactions....they may be causing some long term damage.

Best of luck!!

rez Apprentice
rez
Posted

Everyone's different. You can severe symptoms initially and then heal, go back on gluten and feel nothing. Everyone is so different. This happened to my friends daughter. She was biopsy proven. Now, the symptoms are back a few years later.

seattlecdfriend Rookie
seattlecdfriend
Posted
  • Author
I suppose it's plausible. But I'm biopsy diagnosed and my gastro said they have a "zero" tolerance policy for gluten (she's even wary of the gluten-free oats???) so until I hear from her I can't have any gluten ever again...

AmnadaD. I ahve heard the same thing about oats as they can be contaminated at the "factory".

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

Celiac.com Sponsor (A8-M):


Mtndog Collaborator
Mtndog
Posted

I suppose anything is possible, but I got so sick eating gluten and it took me such a long time to get better I would NEVER do it again.

seattlecdfriend Rookie
seattlecdfriend
Posted
  • Author
I suppose anything is possible, but I got so sick eating gluten and it took me such a long time to get better I would NEVER do it again.

After reading some other posts, I am now wondering if POSSIBLY my friend could have been misdiagnosed back in 99 as having celiac disease and possibly she is only gluten intolerant...she was gluten-free for a year and stopped after that. The year had to help and her symptoms really did drastically drop off after that and were nearly silent for the next 6 years.. mystery, mystery..

thanks to all!

girlfromclare Apprentice
girlfromclare
Posted

A friend of mine was diagnosed celiac as a child... had all the classic symptoms... but she had been terrible with the diet for most of her young adult life and it wasnt really affecting her - however now in her late twenties she has just had to have

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

As far as I can figure, celiac disease is what happens when you have gluten intolerance and continue to eat gluten.

It's looking more and more likely that the same can be said of MS, fibromyalgia, lupus, rheumatoid arthritis, autoimmune thyroid disease, and probably others as well.

I know people with those conditions. There is no way any of those are worth consuming a small amount of gluten, at least, not to me.

I'm perfectly happy being gluten-free. I can make any of the formerly gluten-laden foods I want by substituting other flours. They taste good (wich I could say the same for the premade versions at the store), and I'm probably eating much healthier than I did before.

CMCM Rising Star
CMCM
Posted

I have never been a person who reacted violently. So after my diagnosis in Jan. of 06, I went pretty seriously gluten free from then until October, with only a slip-up here and there. We went to Hawaii in October, so the cheating really started there. First, I split pancakes with my husband. That became a daily thing. Then some bread at dinner. Then other stuff. And I wasn't getting any major reactions, so I thought, GREAT...

I never went hog wild, but bit by bit, stuff started happening and I was getting noticeably ill again, and by last month I realized I had to get back into the 100% gluten free mode.

I've read that to an extent, your body (some people, not all) can sort of "adapt" to the stress of eating gluten until you reach a kind of "overload" state. I almost think people who get immediate and undeniable reactions might be luckier than people like me, who can get to feeling better gluten free, develop gluten illness amnesia, and be tempted to be less strict as a result.

I'm at a point right now where I'm accepting that I have to be strict and stay that way...I hope I can stay with this mind set. <_<

Guest cassidy
Guest cassidy
Posted

I was never diagnosed so I don't know if I have gluten intolerance or celiac, but I know I can't have gluten. I have never voluntarily gone back on it, however, being accidently glutened has been enough proof for me that I can't have it.

I don't know what type of problem your friend has but gluten intolerance doesn't just go away. I know that I am much more sensitive than many biopsy-diagnosed celiacs who can eat in restaurants and don't worry about if things are produced in the same facility as gluten.

I have been sick since birth but there were times when I felt better and when I felt worse. I would wonder if someone tried eating it again and seemed fine, it that was just a stage they were going through where they didn't have many symptoms. I feel totally crappy when I'm glutened now and I know I didn't feel that bad every single day before I went gluten-free.

blueeyedmanda Community Regular
blueeyedmanda
Posted
I have never been a person who reacted violently. So after my diagnosis in Jan. of 06, I went pretty seriously gluten free from then until October, with only a slip-up here and there. We went to Hawaii in October, so the cheating really started there. First, I split pancakes with my husband. That became a daily thing. Then some bread at dinner. Then other stuff. And I wasn't getting any major reactions, so I thought, GREAT...

I never went hog wild, but bit by bit, stuff started happening and I was getting noticeably ill again, and by last month I realized I had to get back into the 100% gluten free mode.

I've read that to an extent, your body (some people, not all) can sort of "adapt" to the stress of eating gluten until you reach a kind of "overload" state. I almost think people who get immediate and undeniable reactions might be luckier than people like me, who can get to feeling better gluten free, develop gluten illness amnesia, and be tempted to be less strict as a result.

I'm at a point right now where I'm accepting that I have to be strict and stay that way...I hope I can stay with this mind set. <_<

I know all about this, once I felt real good I started doing things, like an occasional Olive Garden meal or Cheesburger. At first nothing happened so I thought everything was ok, and it became more frequent that I did these little slips, soon I was starting to feel worse again.

So now I am no longer doing those slip-ups, it is not worth it.

sillyyak Enthusiast
sillyyak
Posted

I will never go back to eating gluten.I got accidently glutened recently and I had 2 days of D. and terrible stomach pain. Horrible.

chocolatelover Contributor
chocolatelover
Posted

Love your name, sillyyak! Sorry to get off topic, just had to comment! :lol:

seattlecdfriend Rookie
seattlecdfriend
Posted
  • Author

Thank you everyone for all your replies. As a celiac disease friend, I am not in the "decision maker" in my friends journey, yet suffer with her. She (we) attended a support group mtg last night- she stopped in 2001- facilitated by a Dr. and it appeared to begin to push her toward going gluten-free again. One thing we learned is that wheat free does not mean gluten free but gluten-free does mean wheat free. Knowledge is good!

Thanks again and blessings to all!

CarlaB Enthusiast
CarlaB
Posted

I am "only" gluten intolerant and have been gluten-free for a little over a year. Recently as part of the supplements my Lyme doc has me taking, I started taking one that had barley in it. Barley was about the 20th ingredient on the list and since I'm NOT celiac (don't have the genes), I thought I'd go ahead and try it as I had never tested to see if all gluten bothers me or just wheat (I was positive with Enterolab for gluten intolerance).

It took about a week and half, but I definately started to feel the effects of glutening. I stopped taking that particular supplement. This was a lot less gluten than an occassional cheeseburger would provide!!

I think that if a celiac goes back on gluten, it's only a matter of time before they start getting sick again. As for the gluten intolerant, well, right now I can't eat it .... we'll see what happens when my Lyme is better -- the only time I've ever had digestive symptoms is when I'm having a Lyme flare-up, so the two might be related for me. I have two daughters though who also don't eat gluten by their own choice because they feel so bad when they do.

Considering how little research is done on celiac, there is even less done on gluten intolerance, so right now we just don't know and they're being treated as the same thing in general.

If your friend had a positive biopsy or even blood test, she wasn't misdiagnosed. Both of mine were negative.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast.
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Publications & Publicity
      1

      Coeliac UK Research Conference 2025

      Thanks for sharing this!
    3. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared....
    4. trents
      - trents replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Blood tests low iGA 4 years later digestive issues

      Keep us posted.
    5. Scott Adams
      0

      Celiac.com Video News: November 2025

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.