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

Can Going Off Gluten Be Dangerous?


arocchio

Recommended Posts

arocchio Newbie

So I have been off gluten for about a month.  I feel better than ever.  I went off gluten before thinking of being tested for Celiac or sensitivities.  I slowly became convinced that all my health problems were related to gluten.

 

So I have a friend who is telling me OVER and OVER and OVER. That going off gluten without a diagnosis can be very dangerous.  Her doctor said it can make a person very sick once they eat gluten again even if they have no allergies.  My nutritionist said, "IF you feel better not eating, it don't eat it. IF you feel sick when you eat it, don't' eat it."  Apparently my friend read a study that showed that people who were not gluten sensitive or celiac became very ill with celiac-type symptoms after going off gluten and then reintroducing this to their diet.  

 

Has anyone heard of this?  Have you read these studies?  Have you heard that gluten can make you sick if you illuminate it and then eat it?

 

 

 

 

 


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

Going off gluten is not dangerous.

 

A gluten-free diet is not missing anything you need, although getting enough fiber can be a challenge. Most of the fiber in a typical diet comes from grains such as wheat and oats.

 

Cases such as your friend describes are rare, but do happen. They happen because sometimes your body develops an ability to cope with something. If you remove that for a while, then the latent sensitivity may become overt. Gluten sensitivity is NOT an allergy, although some people (including some with celiac disease) have an allergy to wheat.

arocchio Newbie

Ok so I know this conversation from below is LONG.  But maybe some one can give my some prspective that what "apple" and "orange" are saying.  Who is correct?  


  •  
    Open Original Shared Link Never been through the testing for Celiacs. But 100% certain I have an intolerance. I ate a bite of Jax's food at a restaurant forgetting it had flour is a thinkener for the sauce. Pretty sure that caused me to have the abdominal pain yesterday and some of today.
    Open Original Shared Link via Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link Sounds like the symptoms. My sister in law has it, so I know a little about it. It does get difficult when trying to figure out good recipies for the bready stuff, but it's mostly consuming a diet of fresh foods and produce.  It definitely helps you eat cleaner! I've thought about trying it for that reason alone! Lol.
    Open Original Shared Link via Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link I use a bunch of applesauce for gluten-free baking.
    Open Original Shared Link via Open Original Shared Link · Open Original Shared Link
  •  
     
    Oranges You might want to think about getting tested, Open Original Shared Link. See what your medical nutritionist says. I've heard that anyone who cuts gluten for a while and reintroduces it can have symptoms like those you describe.
    Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link IMO, the testing is likely unnecessary at this point. It's just an extra expense and the outcome is the same - you can't have gluten either way. Plus, getting tested means that you'll be miserable for a few weeks because you must have lots of gluten in your system for them to test for a reaction.
    Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link Open Original Shared Link, as you know, my mother-in-law just went through testing and was diagnosed with Celiac's. She had a very different experience and very different advice than Apples. Which is probably why you should leave it to an expert to determine what you need to do. 
    Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link I'm curious what the difference was, Orangesl. If you have Celiac's, you cannot have wheat or gluten. There is no cure. If you have a wheat allergy or a gluten intolerance, you cannot have wheat or gluten. There is no cure. If you have any of these things and you do eat the offending food, you will be sick.
    Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link I'm quite familiar with Celiac disease as my mother-in-law was just diagnosed with it and I have several friends who have it as well. Without getting into too many details, the doctors indicated that she should continue to have a small amount of gluten up until her diagnosis (not lots), and that eliminating gluten completely from one's diet can cause an adverse reaction upon reintroduction (in anyone, not just those with Celiac's or an intolerance). His advice was not to eliminate it unless and until it became necessary. In my limited research, I've read a number of articles indicating the same and providing specifics as to why this is the case. But again, I'm not an expert. 
    Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link It is hard to decide what is best. When you go to the Celiac website and forum there are a lot of reasons to get tested. But if you do not have celiac and are just intolerant the only way to know is to go off it, see if you symptoms improve, then take it. If you do have a reaction, you are sensitive. At least that is what the forums say. There is a medically recognized difference between gluten sensitive/intolerant and celiacs disease. One is more like an allergy the other is an auto immune disease. The nutritionist as already told me to stay away from gluten. Since I have started down this path and feel better I can continue this way for a few month and let me body heal. Then I might introduce gluten by eating just a little. One cracker/ day for week is likely to get positive test results without having a huge reaction (if you have allowed your gut to heal). However, per advice of a Medical Professional, I am not having gluten. I have known for at least 10 years that I am sensitive. But have never cared enough to stop eating things I like. The only advantage of getting a true medical diagnosis is so that the hospitals, and jails legally have to prepare gluten free food for you. And if you are ever in a stadium/concert or venue that does not allow food you are allowed to bring in your own gluten-free food (with Dr. note).
    Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link I know a lot of people have very strong opinions of Gluten free. and Celiacs. I have gotten my information from Celiac.com (the website that webMD refers you to) and two different nutritionists.
    Open Original Shared Link · Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link I just hate to see anyone going gluten free if they don't have to!  It's tough! And, if you're diagnosed with Celiac's, it's even tougher! Let me know if you need any resources... my MIL (and all of us, really) are learning quickly!
    Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link Oranges, I guess I am wondering why someone would ever go off gluten if they didn't need to? If there weren't already sure they were at least sensitive. I have seriously had at least 4 doctors tell me to stop eating gluten and/or get tested. Had I not already known I am at least sensitive I would never give it up. It is inconvenient and not very fun. However, when you go off gluten for a few weeks, headaches are gone, back no longer hurts, brusies heal, RLS is gone, you sleep better, you acne clears up, you anxiety lessons, and other great things happen. It is motivation to continue with the lame ass food restrictions. All of the above are symptoms.
    Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link But even a small amount of gluten for those with an intolerance, allergy, or Celiac's (diagnosed or not) can be extremely painful for weeks and it can cause symptoms for months. Anita said she had a bite of food with flour in it. And that was enough for her to feel sick. I think that if you know it makes you sick, then why have it at all? I haven't done limited research. I've done extensive research. My little one cannot have wheat or gluten. I don't know if she has Celiac's. It doesn't matter - the result is the same. If she has gluten, she's sick for days or weeks regardless of the diagnosis. I work for a company that trains food services professionals (cafeterias, restaurants, schools) on serving people with special dietary needs. Celiac.com is a great resource and what your nutritionist is telling you to do is very typical. Identifying the culprit making you sick is the hardest part. No one is going to ask you for a note that says you cannot have gluten - it's like asking someone to prove that they cannot walk so they need a wheelchair.
    Open Original Shared Link · Open Original Shared Link
  •  
     
    Open Original Shared Link Oh, and yes I went off Gluten before realizing the the smart path was to get tested first. But after being off it for a week (and feeling better) there was no real advantage of getting sick again for a positive test. When I can get tested in a few month when I am more up to feeling horrible for a diagnosis.

 

OK so I would love it if someone could give me insight as to what "Oranges" is talking about.  

arocchio Newbie

"Gluten sensitivity is NOT an allergy, although some people (including some with celiac disease) have an allergy to wheat."

  

Thanks for the clarification.  I think I continually use misuse the term "allergy"  That also explains why all the Allergists tell me I am not allergic to anything even thought I seem to always have allergies.

shadowicewolf Proficient

Nope, not at all.

 

If, all of a sudden, you got tired from eating too many oranges and decided to stop eating them, would that be dangerous? Nope.

 

Allergies can happen at any time, of course. There is no predicting those. However if you feel better off of it, then by all means, don't eat it.

Adalaide Mentor

If you stop eating gluten for a while then start again and it makes you sick, chances are you are you are either gluten intolerant or an undiagnosed celiac. Having celiac type symptoms from gluten is exactly what gluten intolerance is. Your friend either made up the study, misunderstood the study, or the study was done by complete morons.

Cara in Boston Enthusiast

For many people with gluten sensitivity, their reaction to it does indeed get worse the longer they are off gluten.  They will react to smaller amounts and their symptoms will be more severe.  However, if they do not have a sensitivity, they will not notice a change at all.  It only happens if your body is sensitive in the first place.  Giving up gluten will not make you suddenly develop an intolerance.  If this happens to you, you already had an intolerance.  You already should not be eating it.   

 

You do not need gluten in your diet to be healthy.  Many will argue that you would be healthier if you eliminated all grains . . . not only wheat.  


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



Celiac.com Sponsor (A8-M):



Ollie's Mom Apprentice

I only eat cauliflower when it's in season. Same as asparagus. So for many months of the year, I don't have even a trace of these foods. When they're back in season, I can eat them no problem.

My husband has gone months eating gluten free, then eats it again if he's out with friends or craves fast food. He does this no problem.

But.. I can't touch gluten. He can't touch cantaloupe. We each have our own food sensitivities. Not eating a particular food doesn't create intolerances; but elimination diets can and do make underlying sensitivities more obvious.

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. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

    2. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    4. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,355
    • Most Online (within 30 mins)
      7,748

    tealangel09
    Newest Member
    tealangel09
    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

    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • 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.