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

does your diet have to be like a perfection?


Churpy

Recommended Posts

Churpy Newbie

I was diagnosed about a year ago and have had some trouble maintaining a continuous gluten free diet.

 

just curious, has anyone been diagnosed for a long time and has been consistently gluten free?

did you have trouble perfecting your diet in the beginning?

how long did it take?

 

 

Also doing some research, I was told that if you've been gluten free long enough (5+ years roughly) you can slowly start introducing gluten into your diet again. has anyone tried this..?

 

would appreciate any answers.

 

thanks in advance!!

 

 

 

 


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



Celiac.com Sponsor (A8-M):



flowerqueen Community Regular

Not sure what you mean by perfecting your diet? Do you mean accidentally eating gluten?  

As to re-introducing gluten again, if you have celiac disease, please DO NOT ever re-introduce gluten again. It's an auto-immune disease, not a food intolerance. It will damage your gut again if you do.  Hope this helps.

cyclinglady Grand Master

FlowerQueen is correct.  Once diagnosed with celiac disease, you should never consume gluten again without the risk of becoming very ill (osteoporosis, liver damage, lymphoma, etc.).  

I think everyone has trouble in the beginning sticking to a gluten free diet.  That's because gluten is in so many processed foods.  It takes time to learn to read labels, make a safe kitchen, learn to eat out, get your family to support you.  I would advise reading out Newbie 101 section under "Coping" within this forum.  It contains valuable tips for becoming gluten free.  Also, check out the University of Chicago's celiac website to learn about celiac disease.  Knowledge is power!  

Everyone has different degrees of damage, but I would say that learning the diet and healing can take months to a year or longer.  The good news is that this is an autoimmune disorder that is treatable -- avoid gluten at all costs!  

Take care and welcome to the forum! 

 

kareng Grand Master
23 minutes ago, Churpy said:

I was diagnosed about a year ago and have had some trouble maintaining a continuous gluten free diet.

 

just curious, has anyone been diagnosed for a long time and has been consistently gluten free?

did you have trouble perfecting your diet in the beginning?

how long did it take?

 

 

Also doing some research, I was told that if you've been gluten free long enough (5+ years roughly) you can slowly start introducing gluten into your diet again. has anyone tried this..?

 

would appreciate any answers.

 

thanks in advance!!

 

 

 

 

I  think you need to watch where you get your medical info!    Of course you can't introduce gluten back in. And  of course you have to be strictly gluten-free and not intentionally eat gluten.

 

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve.

The gluten-free diet requires a completely new approach to eating. You have to be extremely careful about what you buy for lunch at school or work, eat at cocktail parties, or grab from the refrigerator for a midnight snack. Eating out and traveling can be challenging as you learn to scrutinize menus for foods with gluten, question the waiter or chef about possible hidden sources of gluten, and search for safe options at airports or on the road.

However, with practice, identifying potential sources of gluten becomes second nature and you’ll learn to recognize which foods are safe and which are off limits."

Open Original Shared Link

 

 

kymbp Newbie

Yes.  You have to be 100% gluten abstinent when you have Celiac Disorder.  It gets easier to be gluten abstinent, not because you get used to it but because of the negative effects that ingesting gluten causes when you accidentally eat something with gluten.  Nothing tastes good enough to go through a glutening. 

As your system heals it will become less tolerant of your occasional lapses into gluten consumption--accidental or otherwise.

You have to take this seriously.  You get used to it and there are some wonderful gluten-free options out there.  But you can't go back to gluten and stay healthy.  It just doesn't work that way.

Good luck.

VickiV Newbie

Yes, you must avoid all gluten from now on-- it is the ONLY treatment for celiac disease.    Even if you don't notice symptoms, any gluten you eat is damaging your body.    

I've found it very helpful to focus on what I "can" eat instead of on what I "can't" eat.   I've found Paleo Diet and Mediterranean diet recipes to be extremely helpful.        

Educate yourself about celiac and the gluten free diet as much as you can.   You will eventually find what works for your body and your lifestyle.   

squirmingitch Veteran

Churpy, I think I know where you got that bit about after X number of years you can reintroduce gluten but it wasn't five years. Over 50 years ago they used to think that children who had celiac disease could be gluten free for TEN years & then they could eat gluten again. WRONG on all counts!!!!! Celiacs never become NON celiac; not even if they lived to be 120 and didn't eat gluten for the last 115 years.


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



Celiac.com Sponsor (A8-M):



cap6 Enthusiast

First ~ Re-introducing gluten after so many years is an "old" thing.  I am 6 years diagnosed and I was originally told that  same thing by my Dr.  At the time my doctor was not  terribly familiar with Celiac and started doing research right along with me.  After she did more research on the (then) current studies she changed that to a "never eat gluten again!" 

What happens, with some people (note I say "some"), is that once your gut does heal you enter into what can be called the "honeymoon" period.  Your gut is healed and you can consume gluten without feeling physically sick.  But...  and this is the biggy should you be one of those who can tolerate it.....  eventually you will get sick again.  And all during the time you were happily munching on gluten and not feeling physically sick the damage to your insides was still going on.  So... only you can answer if it is worth it or not.  I say no!!

Second ~ I am 6 years gluten free.  I can count the number of times I have consumed gluten, each time was a total accident.   So, to your question on consistency, I would say it has been six years.

And third ~ As for perfecting the diet, well, that can have several answers.  Yes, like most everyone, I struggled greatly in the beginning to learn what gluten was and where it hides.  My feeling of perfection came after about 3 years when I discovered the Paleo diet and went pretty strict Paleo.  That is when it became a very simple thing and my health improved dramaticly. 

Personally, I would grab a Paleo book, see how simple g.f. can be.  Read about the effects wheat can have on everyone (not just those with celiac) and I think you will have an easier time of it.  Good luck to you.  !!

 

  • 2 weeks later...
peoniesxplease Newbie

DO NOT EAT GLUTEN. YOU WILL BE TEMPTED. In short... you will suffer. 

Don't do it.

I found out I had a wheat intolerance ten years ago. There were none of these gluten free products on the market. At that time I could even get away with eating Ezekiel bread pretty regularly (do not do this, if you are celiac it will make you very ill). I had to be PERFECT though in order to maintain my good health and glowing skin. Truly perfect. At that time I was off processed foods, dairy, fruit juice, vinegar, all white grains... but it paid off. I lost a little weight, looked great, and felt amazing.

Then I started to cheat maybe once a month. I knew to anticipate a stomach ache, fatigue, and perhaps sinus trouble the following week... but at the time I THOUGHT it was worth it.

Flash forward to living mostly gluten free from 16 to 23, and eating quite healthy in general... and I went to Europe for study abroad. I started eating wheat in every country I visited! AND BOY DID I SUFFER. Intense mood swings, stomach aches, lethargy, brain fog, sinus trouble... This is also around the first time I experience the huge belly bloat consistently after eating wheat. Then it got worse. I developed oral thrush THREE TIMES in Europe. And it was due to wheat consumption. I had to beg them for the medicine in Denmark.

So now here I am, 26, and believing that I am still not celiac... Silly me. I definitely DO NOT cheat now... but on Feb 9th I took a really hard exam and was offered four slices of pizza after. I ate all four. I felt like I had a brick in my stomach. But I went straight to cycling class after and felt fine. Got through it ! And said to myself "well... I don't feel great so I shouldn't do that again, but I am okay." The next night I was in bed by 8pm, with the worst brain fog. I called out of work two days that week, I skipped office hours (for grad school), and I canceled all of my workouts. I couldn't eat a thing. Waves of nausea, a bloated belly no matter what I ate, so many aches all over my body, extreme lethargy... I hardly left my bed all week. The ONLY things I wanted to consume were tea and juice. Even a quarter cup of gluten free granola and some almond milk made me head to bed. Once I started eating again I know only to allow myself one meal per day and to consume it around bed time so I could lie in a complete daze afterward. This is coming from somebody who would rather eat small tiny bits of healthy food all day than eat a square meal !

I am STILL recovering. I had some traces of wheat today I think because my stomach is completely torn up. I threw up all night and once again I am bedridden. 

 

I am so sorry to tell you that... No. You won't be able to eat gluten again. Eventually, once you cut it out and let your body heal, you will not want it again, because the adverse feelings you have from eating are NOT worth it. And most people, like myself, have an increase in sensitivity over the years. 

You can do this !!! Take care of your body (and don't make the mistake I have cheating and thinking "I can handle it, its not that serious for ME." It is serious).

Archived

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

  • 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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,243
    • Most Online (within 30 mins)
      7,748

    Dorfor
    Newest Member
    Dorfor
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.