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After diagnonisis, why go 100% gluten free


sddave

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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?


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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. 

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    • Aretaeus Cappadocia
      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
    • nancydrewandtheceliacclue
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    • Aretaeus Cappadocia
      oops. I didn't see that before posting or I would have at least referenced it. The two recipes are pretty similar, but I think the newer one is a little simpler/faster. Next time though I will search more before posting.
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