Post-remission re-flare with weight gain

[Down with the Pastryarchy]

Greetings fellow Celiacs!
I was first diagnosed while living in Prague, and following an AIP diet and the advice of a Functional Medicine Naturopath there, I went into remission (ttg markers below 6) and lost 30+lbs, which allowed me to feel like my best self (and the weight was a sign of inflammation in my body in my case). There was less strain on my joints, more mental clarity, better memory function, more energy, etc. And I was happy. 

I had surgery and an IUD added to my life a year into that remission. It brought on a horrendous flare and I ended up in hospital with pneumonia. I lost more weight while sick, and ate a lot of (safe) carbs while I was trying to recover a healthy weight. I also moved back to Victoria, BC in the midst of that. I've added thyroid meds and LDN to my treatment since then, and swapped around a few supplements, and added in foods that weren't available in CZ. The first 1.5 years here I also lived adjacent to the kitchen ventilation of a busy gluten serving restaurant (I have reacted to airborne gluten in other situations too so that's not what's up for debate). I have been over my diet, supplements, and medications with a fine tooth comb and cannot find a source where gluten is getting in. And yet my ttg varies between 13 and 23 (it was 20 at preliminary diagnosis, 59 after eating a small portion of gluten daily for 4 days leading up to testing, which also made me violently ill for 6 weeks+++). I have also gained 35lbs+ and have experienced a relapse of almost every symptom I had prior to diagnosis/starting Autoimmune Paleo. I'm baffled. My care team is baffled. So I thought I would put this out there just in case somewhere in this forum there is another human dealing with similar things who has magically figured out the answers I need. Many thanks. 

[cyclinglady]

6 hours ago, Down with the Pastryarchy said:

Greetings fellow Celiacs!
I was first diagnosed while living in Prague, and following an AIP diet and the advice of a Functional Medicine Naturopath there, I went into remission (ttg markers below 6) and lost 30+lbs, which allowed me to feel like my best self (and the weight was a sign of inflammation in my body in my case). There was less strain on my joints, more mental clarity, better memory function, more energy, etc. And I was happy. 

I had surgery and an IUD added to my life a year into that remission. It brought on a horrendous flare and I ended up in hospital with pneumonia. I lost more weight while sick, and ate a lot of (safe) carbs while I was trying to recover a healthy weight. I also moved back to Victoria, BC in the midst of that. I've added thyroid meds and LDN to my treatment since then, and swapped around a few supplements, and added in foods that weren't available in CZ. The first 1.5 years here I also lived adjacent to the kitchen ventilation of a busy gluten serving restaurant (I have reacted to airborne gluten in other situations too so that's not what's up for debate). I have been over my diet, supplements, and medications with a fine tooth comb and cannot find a source where gluten is getting in. And yet my ttg varies between 13 and 23 (it was 20 at preliminary diagnosis, 59 after eating a small portion of gluten daily for 4 days leading up to testing, which also made me violently ill for 6 weeks+++). I have also gained 35lbs+ and have experienced a relapse of almost every symptom I had prior to diagnosis/starting Autoimmune Paleo. I'm baffled. My care team is baffled. So I thought I would put this out there just in case somewhere in this forum there is another human dealing with similar things who has magically figured out the answers I need. Many thanks. 

When was your last endoscopy?  If your small intestine has healed, another autoimmune disorder or illness  may be the cause of your current slightly elevated TTG.  If villi damage is still there, then you should look at refractory celiac disease.   The good news is that most cases of refractory involves exposure to hidden gluten.  

[ktyler44]

What about shampoo, skin cream, lotions, etc.? 

[Down with the Pastryarchy]

On 2/13/2018 at 10:51 AM, ktyler44 said:

What about shampoo, skin cream, lotions, etc.? 

Those have definitely been thoroughly checked and aren't a possibility at this point. 

[Down with the Pastryarchy]

On 12/21/2017 at 7:26 PM, cyclinglady said:

When was your last endoscopy?  If your small intestine has healed, another autoimmune disorder or illness  may be the cause of your current slightly elevated TTG.  If villi damage is still there, then you should look at refractory celiac disease.   The good news is that most cases of refractory involves exposure to hidden gluten.  

I've only had one endoscopy. Thankfully my ttg is coming down since switching butcher shops and adding back in more of the healing tools that helped to get me into remission the first time.