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Even gluten-free Foods Triggering Reaction After Initial Glutening?


jddh

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Zenith Explorer
On ‎12‎/‎8‎/‎2014 at 4:23 PM, icelandgirl said:

Wow! Amazing news...congratulations!

 

I'm curious about not letting your stomach get empty. Do you know why? I'm asking because I've noticed I feel really bad if I let mine get completely empty...but no idea why.

OMG ME TOO.  Why? slight Nausea, slight hurting. Some days worse than others. Like past few days haven't noticed that but definitely some days I do.


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Rangerred Newbie

Realize this is an old thread but I’m a very sensitive celiac who add sx of glutening for over a year - neuropathy, fatigue, constipation, bloating, foggy brain, elevated liver enzymes, etc- finally linked it to Oral B dental floss. Quit using it and in a few weeks felt great and after a few months the liver enzymes normalized. 

cyclinglady Grand Master
5 hours ago, Rangerred said:

Realize this is an old thread but I’m a very sensitive celiac who add sx of glutening for over a year - neuropathy, fatigue, constipation, bloating, foggy brain, elevated liver enzymes, etc- finally linked it to Oral B dental floss. Quit using it and in a few weeks felt great and after a few months the liver enzymes normalized. 

The Original poster on this thread struggled with non-responsive celiac disease.  If I recall, Type I refractory.  I guess I am at odds with your response.  I use this product and I have healed from celiac disease based on repeat biopsies.  How can you be sure that this floss was the culprit for sure?  Liver enzymes can be out of range for many reasons.  
 

https://www.medicalnewstoday.com/articles/325838#causes

I thought  for sure I was experincing active celiac disease symptoms.  I could not figure out any gluten exposures.  I even trialed the Fasano restrictive gluten-free diet without success (that included never eating out).   Turns out after a repeat endoscopy that my small intestine had healed, but that I had developed Autoimmune Gastritis years after my celiac disease.  Related?  Probably.  I think all autoimmune is linked.  
 

I learned that not all things are due to celiac disease.  You can develop more than one autoimmune disorder, infections or even cancer.    Floss is made from petroleum based products.  The Oral B Glide from Teflon.  Not the best, but certainly no gluten.  Why add something sticky to a product like this?  

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    • trents
      Yes, there is a trend in the medical community to forego the endoscopy/biopsy and grant an official celiac diagnosis based on high tTG-IGA antibody scores alone. This trend started in the UK and is spreading to the USA medical community. And yes, 5-10x the normal level is what I have been seeing as the threshold as well. Here is the relevant section dealing from the article above dealing with the importance of the total IGA test being ordered. See the embedded attachment.
    • hmkr
      Ok, interesting. Not what I was thinking that meant. I'm reading the article and trying to understand. I see this “According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy” My IgG is 90, which is 6 times. So to me that means it's highly likely I do have it. 
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    • hmkr
      Normal range: 70 - 400 mg/dL, a little above middle of the range. So what does that mean? Thank you! I will check out that page you linked. Appreciate it! 
    • trents
      Well, the only thing I would conclude with would be, if you choose not to trial the gluten free diet, is to encourage you to get periodically tested, either antibody blood tests or the biopsy or both. I think it something that needs to be monitored.
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