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Post Diagnosis, Recovery & Treatment of Celiac Disease
Discussions related to the recovery process after you've been diagnosed.
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- Alibu posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Waiting on biopsy after positive bloodwork, but also not really believing this is real
I was tested back in 2017 and my TTG-IGA was mildly elevated (an 11 with reference range <4) but my EMA was negative and biopsy was negative. Fast forward to 2 weeks ago where I was like y'know what, I still have so many symptoms and I'm always so sick, I should repeat this, thinking it was not going to be positive. I also found out through 23 and me... -
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- trents replied to linnylou73's topic in Coping with Celiac Disease1Found coffee or coffee pods that contain gluten
Welcome to the forum, @linnylou73! Are you claiming this based on a reaction or based upon actual testing? -
- linnylou73 posted a topic in Coping with Celiac Disease1Found coffee or coffee pods that contain gluten
Sams club membermark columbian coffee is either cross contaminated or the pods contain gluten
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I was tested back in 2017 and my TTG-IGA was mildly elevated (an 11 with reference range <4) but my EMA was negative and biopsy was negative. Fast forward to 2 weeks ago where I was like y'know what, I still have so many symptoms and I'm always so sick, I should repeat this, thinking it was not going to be positive. I also found out through 23 and me that I do have the HLA-DQ2.5 gene so I thought it would be good to repeat given my ongoing symptoms. Well my blood work came back with a ttg-iga level of 152.6 with a reference range of <15 and my EMA was positive and EMA titer was 1:10 with reference range of <1:5. I guess I'm nervous that I'm going to do the biopsy and it's going to be negative again, especially since I also had an endoscopy in 2020, not to look for celiac but just as a regular 5 year thing I do because of all my GI issues, and they didn't see anything then either. I have no idea how long the EMA has been positive but I'm wondering if it's very recent, if the biopsy will show damage and if so, if they'll say well the biopsy is the gold standard so it's not celiac? I of course am doing all the things to convince myself that it isn't real. Do a lot of people go through this? I think because back in 2017 my ttg-iga was elevated but not a huge amount and my EMA was negative and my biopsy was negative, I keep thinking this time it's going to be different. But this time my ttg-iga is 152.6 with reference range <15, and my EMA was positive. BUT, my titer is only 1:10 and I keep reading how most people here had a ttg-iga in the hundreds or thousands, and the EMA titer was much higher. So now I am convinced that it was a false positive and when they do the biopsy it'll be negative.
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Welcome to the forum, @linnylou73! Are you claiming this based on a reaction or based upon actual testing?
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By linnylou73 · Posted
Sams club membermark columbian coffee is either cross contaminated or the pods contain gluten -
Thank you! Very helpful.
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By Scott Adams · Posted
This varies a lot from person to person. I include foods that are not certified gluten-free but are labelled "gluten-free", while super sensitive people only use certified gluten-free. Both types of products have been found to contain gluten, so there are no guarantees either way: It you are in the super sensitive group, eating a whole foods based diet where you prepare everything is the safest bet, but it's also difficult. Eating out is the the most risky, even if a restaurant has a gluten-free menu. I also include items that are naturally gluten-free, for example refried beans, tuna, pasta sauces, salsas, etc., which have a low overall risk of contamination.
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