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Gluten free


Suzi374

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Suzi374 Rookie

Hi all. I have been in here before. Went to see neurologist due to peripheral neuropathy in feet. He asked about celiac and I said I was tested in past. It was 2017 and he didn't do antibody test because of this and due to recent scopes although I don't know if they biopsies for celiac then. Bloods normal except I have undetectable ferritin levels and iron was 8. I'm in Australia. B12 was low normal. Nerve conduction was normal was on the low side which surprised him. I also gave hashimotos. I went off gluten anyway, yes I understand you need to be on it to get results, not interested in the discussion or eating gluten to find out. I've lost my brain fog, my knees bend well again, I'm not constipated anymore, large fibre diet being vegetarian, so it wasn't a fibre issue. Need an iron trans if I can't get iron up by August, I don't seem to absorb iron supps well(I've had a past drug reaction and get highly anxious about meds and procedures :( ). I also struggle with panic attacks and severe anxiety. 
panic attacks are a bit worse, maybe due to iron. But I have a lot of flatulence now. Is that normal?  It's crazy.  I e been very strictly gluten free which neurologist asked me to continue with, since April 20. I've also noticed reflux improving remarkably. I hope it's not a lull and it comes back. How long will it take gut to heal if gluten is the issue?  I was date I shouldn't have it with hashimotos but thought it was a bit of a new age airy fairy thought. Maybe not 

  • 2 weeks later...

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Scott Adams Grand Master

This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet:

However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people.

According to this study:

Quote

After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies).

This article explores other causes of flattened villi:

 

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

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    • trents
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      I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluten free eating may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.
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