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

After diagnonisis, why go 100% gluten free


sddave

Recommended Posts

sddave Enthusiast

Ok, I get it.  A person is celiac and gluten is bad.   But why immediately go 100% gluten free.

Seems really stupid to me.

Why aren't patients given a gradual reduction lowering gluten levels.   Instead to shocking their body/brain/etc. of a drastic change of going cold turkey gluten free?


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



Celiac.com Sponsor (A8-M):



Jmg Mentor

Its toxic to celiacs. It's generating an immune system response, even a tiny amount keeps that reaction going. So there's not really any benefit to cutting down and mean times the damage is continuing. 

The other problem is more psychological. To heal you need to be completely gluten free for life. No exceptions, no cheating, not one crumb. That's a simple message to deliver but it loses some of that clarity if instead it becomes, 'cut down'.  Even worse, the patient is still feeling deprived but now they aren't feeling the healing process kicking in, so they can't see the benefit of the diet and they may reject it before it gets a chance to work.

If you found rat poison in your cereal would you taper off gradually or choose a new brand? 

sddave Enthusiast

Your rat poison argument is lame.   I have been gluten for over 40 years until diagnosed 2 wks ago.  And it started at birth.  I don't think 1-2 month of gradual reduction of gluten is going to kill me or damage my villi much worse than it is now.   I feel worse now after going gluten free than I did being gluten.    Why...because of the shock to my system.

Ennis-TX Grand Master

Celiac is a autoimmune disease where the gluten proteins (smaller then germs) confuse your immune system into attacking your own body essentially. There will be a withdrawal of course stopping cold turkey from gluten but you have to if your going to heal. Even small crumbs, residue, or something touching then being removed will leave some of the gluten protein in your food. Hell even residue in a old pot can CC your meal and spike the antibodies and the damage all over again.  

For me it causes not just my immune system to attack my gut, but it was attacking my nervous system, and brain as well. Imagine your brain not working right, just constantly looping like a broken record driving your insane, now imagine you not having proper pain or touch reception in your hand and feet......I was going so crazy and scared I was banging my head on walls to make it stop looping and punching thinks out of anger as to why stuff was not making sense, and why my gut hurt, and why I was constipated for 10+ days.  Funny things I still have scars from punching into the studs in my walls and finding nails with my knuckles. Too this day 3 years later I still have many foods my body can not handle due to food intolerance that developed due to my gut damages, I have random allergies that came about due to my compromised and messed up immune system, I still have lack of feeling from damaged nerves where I can sometimes grab hot pans or cut myself and not feel it (this has been improving as of late). My brain damage effected my ability to process numbers, and do language, so complex math is impossible, and I can no longer do computer programing or understand as much Japanese as I used to.   

These are things that developed from not learning about my disease earlier and going gluten free. And the damage accumulating and spreading. If I had known and stopped cold turkey years earlier perhaps I would be more normal and be able to eat mor foods and not be as mentally broken. 

cyclinglady Grand Master

Although I do not agree with your thought process of gradually going gluten free (it is not advice I have ever seen in all my research concerning celiac disease), you could certainly give it a try.  Eating gluten (or any food) could be considered an addiction.  Not many 12 step programs recommend just cutting down on alcohol, drugs or tobacco for a few months while your body adjusts.  I wonder why?  

I found that the more I learned about celiac disease, the easier it was for me to grieve and then move forward with my life.  I wish you well.  

  • 1 month later...
Rhotitar Apprentice

I definitely didn't feel any shock to my system. Not having pain 24/7 was a miracle it was like a new lease on life. Definitely cutting all consumption of gluten is the right thing otherwise your symptoms will not improve. It definitely was an adjustment for sure I had always eaten bread every morning with my coffee and milk for 28 years. It was my comfort food you could say. I switched to gluten-free bread then ended up cutting that up too. I have replaced all my foods with healthier alternatives. Now I can't even drink milk since it makes me nauseous and gives me inflammation in my joints. Not that it matters since I am vegan now anyways. 

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.