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9 Months Gluten Free Recovery Questions


PersianCeliac

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PersianCeliac Contributor

hi everyone i was diagnosed with an extremely high ttg of >800 and subtotal villous atrophy 9 months ago although i didnt have any symptoms except for iron deficiency especially low ferritin because i dont eat meat. i have been gluten free for 9 months now will get my follow up blood test soon i was wondering whether a folloa up biopsy is necessary ? i would love to hear from your healing stories and if you have had follow up biopsy and your celiac genea. i have a strong celiac gene combination DQ2.5 and DQ2.2.


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Definitely should get the biopsy. Especially since you're pretty well symptomless. You might be doing as good a job as you thought.

I'm 8 months in gluten-free and I have a biopsy next week. It's standard to get followed and get retested, not sure for how long you should be doing that, but at least until everything shows up as clean.

I have no idea what my genes are, that's not something I can really get tested for being in canada.

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      Welcome to the forum, @daniellelawson2011 First, we need to deal with terminology here. When you refer to the "ttg" test I take that to mean the ttg-iga. And when you refer to the "iga" test I take that to mean total iga since the magnitude of the score would suggest that. Total iga is not a test for celiac disease per se. It is run in order to check for iga deficiency. If you are iga deficient, then the ttg-iga and other iga tests that are specific for celiac disease will be abnormally low and this would potentially produce false negatives. You are not iga deficient but, rather, your total iga is abnormally high. This can suggest underlying health conditions, some of them can be serious in nature.  ...
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      After struggling with many different symptoms for years with no diagnosis, I decided to do my own research and I stumbled upon an article about celiac disease. I asked my PCP to order a ttg and iga. The results: the iga was high at 638. The ttg was negative. Of course I will discuss with my doctor, but i would like to hear from people that have went through the process of diagnosis to maybe give me some insight on what this means and where to go from here. Also of note, i had a brain mri which showed white lesions which arent typical at 44 years old. I have many MS symptoms. I go to the neurologist on Tuesday, but just curious if anyone knows if there is a correlation between iga and MS. I...
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      Thank you for your advice. I appreciate the help. 
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