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

Breaking The Rules


Jordanian Celiac

Recommended Posts

Jordanian Celiac Newbie

Hi every one, I am a new member in this site. I have been diagnosed with Celiac since 1998, since then i am living on a gluten free diet, the problem is that sometimes i can't resist breaking the rules and eat gluten food once or twice ayear, i never have any symptoms and my health is good. my question is whether this is ok to do or not. does it really harm me or my body can recover from this, am i causing serious damages to my self. My doctor is not really helpfull when it comes to details

Thanks,

Ola


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

I just heard the other day how much damage getting glutened does to us in a single time, yet for the life of me, I can't remember what I read or where. Gluten is poison to us, so yes, as far as I am concerned, yes, you are doing damage by cheating. In over 5 yrs, I have never cheated, never even really wanted too. Yes, I miss so many old favorites and yes, I have been accidentally glutened and for me, that is my own hell. I do have very severe symptoms if I get glutened. For your health, you really do need to never cheat.

CarlaB Enthusiast

I would imagine without the symptoms that it would be very difficult to stay on the diet ... but you must have had some kind of symptoms to even be tested for it. You do damage every time you eat gluten, so you shouldn't do it.

sunshinen Apprentice

It is the secondary diseases and conditions you have to worry about and why celiacs are encouraged to never cheat. Because you don't have symptoms, you don't know how often or frequently you are getting accidental gluten, so to intentionally add to that can only make things worse by fueling the autoimmune response. Unfortunately, for celiacs it is the stuff you don't see that carries the heaviest consequences.

sunshinen Apprentice
I would imagine without the symptoms that it would be very difficult to stay on the diet ... but you must have had some kind of symptoms to even be tested for it. You do damage every time you eat gluten, so you shouldn't do it.

Yeah, I agree that not having a punishing reminder not to eat gluten would make the diet harder. However, just to clarify, there are many celiacs who have never had any symptoms. These individuals are discovered through random screening and screening done because they have a family member with the disease. And of course, there are also celiacs who were very sick, but after healing, they too don't have any symptoms when they have gluten at a later time. And just to make the point again: unfortunately, a lack of symptoms doesn't mean there is no damage going on inside, and for the celac that damage can lead to everything from diabetes to cancer to nerve damage regardless of any awareness of that damage. Sticking to the diet is, therefore, essential to living a long and healthy life.

Generic Apprentice

I was diagnosed back in 1988, I have never purposely cheated, but I have been glutened by accident more times than I care to remember. As a result of that alone, I have since developed hypoglycemia, fibromyalgia, nerve damage and some thing else that they aren't sure of it yet. (I'm in the process of getting tested for MS, Myosytis and rheumatoid arthritis). I was 13 when I went gluten free and I am now 32, I hope to god I don't develop any more problems.

PLEASE, don't do that to yourself on purpose.

-Laurie

Rebecca47 Contributor

I was dx's in Aug on this year. I have never cheated on purpose, but I glutened my self friday ( I think it was the flour I picked up for my mom). I am still feeling it. I took her shopping. My stomach is like a loud volcano. It won't shut up.

I will be even more careful now that this has happened. I never want to feel this way again if possible. ;)<_<


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Just because you do not get horribly sick each time you eat gluten does not mean that you aren't doing damage to your body. Celiac is an autoimmune disorder, so each time you ingest gluten, you are turning the switch to "on" for your autoimmune system.

I recommend reading a recent book by a leading Celiac researcher and expert from Columbia University (it is listed in my signature). It will explain to you the seriousness of sticking to a gluten free diet, and the problems that it can cause. This is a great resource and will put it all into perspective for you. Plus, it will answer many of your questions that your doctor cannot. You can find it on amazon or other bookstores.

daffadilly Apprentice

The director of our support group went to the international celiac meeting in NY & she said that it is recognized that ONE EIGHTH of a teaspoon of gluten stuff is enough to damage the villi. So you be the judge... You know if we could feel the damage being done to our organs we could all cure ourselves, but we cannot. Some of us are "lucky" enough to get warning signs in the form of pain and illnesses etc.

It is my personal opinion that if a person eats gluten a couple of times a year that they are 1. not educated 2. at high risk for cancer, & I do mean HIGH 3. at high risk for other problems 4. not that serious about their health 5. must not be strict at other times of the year because if they were why in the world would they waste all that good effort that they spent six months of compliance with the diet to eat gluten & undo all the good that had been taking place for six months.

Sorry, but anyone that does this, just starts all over from square one, it takes three to six months to get it all out of your system.

I recommend you read the book "Dangerous Grains"

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,843
    • Most Online (within 30 mins)
      7,748

    Lisa Harrison
    Newest Member
    Lisa Harrison
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dawn Meyers
      Hi I have celiac disease and the dermatitis herpetiformis rash Also other autommune diseases.  I have had bad side effects to all the vaccines I have had and now my Doctor wants me to have the pneumonia vaccine.  I am concerned because of some of the bad side effects I have had in the past example Hep B after shot couldn't  move arm for several months.  Flu shot and COVID was sick right after shot. Told not to get anymore. My lung is inflamed and have a cough I can't seem to get rid of. Very concerned 😟. 
    • knitty kitty
      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
×
×
  • Create New...