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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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    • trents
      I would ask the GI doc about the elevated IGA score of 401. That one is what we commonly refer to as "total IGA" and also known as "Immunoglobulin A (IgA)". It could be nothing but it can also indicate some other health issues, some of them serious in nature. I would google potential causes for that if I were you. Also, if there is a chance the GI doc will want to do more testing for celiac disease, either antibody testing or an endoscopy with biopsy, you should not cut back on gluten consumption until all celiac disease testing is done. Otherwise, you will invalidate the testing.
    • shell504
      Hello. I apologize. I didn't know there wasn't a standard.  The standard listed  for the IGA is normal range 47-310.  The others were all listed as <15.0 u/l is antibody not detected and 15> antibody is detected.  And the negative one the standard is negative.  It is a normal PCP dr. I do have a second opinion appt scheduled with a GI specialist in 2 weeks. Honestly, I haven't cut out gluten at all. I just switched to whole fibers and everything has been getting better. She wanted to do the test just to check, which I was fine with. We'll see what the GI dr says. Thank you for commenting. 
    • trents
      It is also possible that since eating the fries you have been glutened again during the week. I would double check the food in your cupboard and reread the ingredient lists. Food companies can and do change their formulations from time to time such that something that used to be gluten free is no more. What I am saying is, don't assume the distress you are experiencing comes from one incident of glutening. There could, coincidentally, be another one on it's heels. 
    • trents
      Welcome to the forum, @shell504! The IGA 401mg/dl is not a test for celiac disease per se but a check to see if you are IGA deficient. People who are IGA deficient will produce celiac blood test antibody scores that are artificially low which can result in false negatives for the individual antibody tests such as the TTG IGA. You did not include reference ranges along with the test scores and since each laboratory uses custom reference range scales, we cannot comment with certainty, but from the sheer magnitude of the IGA score (401) it does not look like you are IGA deficient. And since there are no annotations indicating that the other test scores are out of range, it does not appear there is any antibody evidence that you have celiac disease. So, I think you are warranted in questioning your physician's dx of celiac disease. And it is also true that a colonoscopy cannot be used to dx celiac disease. The endoscopy with biopsy of the small bowel is the appropriate procedure for diagnosing celiac disease. But unless there is a positive in the antibody testing, there is usually no justification for doing the endoscopy/biopsy. Is this physician a PCP or a GI doc? I think I would ask for a second opinion. It seems as though this physician is not very knowledgeable about celiac disease diagnositcs. Having said all that, it may be that you suffer from NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease. The two gluten disorders share many of the same GI symptoms. The difference is that NCGS does not damage the villous lining of the small bowel as does celiac disease. NCGS is 10x more common than celiac disease. The antidote for both is complete abstinence from gluten. Some experts believe NCGS can be a precursor to the development of celiac disease. There is not test for NCGS. Celiac disease must first be ruled out. So, if it becomes apparent that gluten is causing distress and testing rules out celiac disease, then the diagnosis would be NCGS. Hope this helps. 
    • shell504
      I apologize i can't figure out how to get the picture on here.  Results were: IGA 401mg/dl Deamidated Gliadin IGG. <1.0 Deamidated Gliadin IGA. <1.0 Tissue Transglutaminase IGA AB. <1.0 Endomysial IGA. Negative.  Is she just going based off of the IGA alone? And because that is elevated, it's positive? The test states: "Results do not support a diagnosis of celiac disease." 
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