Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Post-remission re-flare with weight gain


Down with the Pastryarchy

Recommended Posts

Down with the Pastryarchy Newbie

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. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
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.  

  • 1 month later...
ktyler44 Contributor

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

  • 3 weeks later...
Down with the Pastryarchy Newbie
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 Newbie
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. 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,815
    • Most Online (within 30 mins)
      7,748

    lbksunyoga
    Newest Member
    lbksunyoga
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AuntieAutoimmune
      Great tips, Deb. Thanks.  What a pity that they no longer mark items as gluten-free. And it is even more of a shame that you must bring protein bars instead of the crew helping you with your needs. Are you planning on sailing Royal again? 
    • Scott Adams
      I've not heard of any issues with Primal Kitchen, but it certainly would be worth not using the brand for a while to see if this helps. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      If you are super sensitive you may want to look for only Certified Gluten-Free Products, as @trents mentioned.
    • Scott Adams
      I'm not sure about low calorie, as puddings are typically a dessert, but we do have this category: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-pudding-recipes/ This one might work if you cut back on the sugar:    
    • DebJ14
      We are off next week on our 9th RCCL cruise since our diagnoses.  I send an email to special_needs@rccl.com before every cruise letting them know that I am both dairy and gluten free and my husband is gluten free.   Unfortunately, with the new menus they introduced in 2023, they removed the gluten-free designation from each item on the menu.  Instead of having a dedicated person take gluten-free orders, it now falls to your regular wait staff.  Some have been great and some not so good.  We had a great cruise in May and hit it off with our head waiter.  She went the extra mile and ordered gluten free desserts that were not on the menu.  My problem arises from other food allergies.  I am allergic to dairy, beef, and several types of fish.  On those days my husband is a happy camper with a steak or salmon, veggies and a baked potato.  I end up not getting enough protein, so I bring protein bars.  I also bring snacks for the room. As long as the food is commercially prepared and unopened, you can bring it. Often the only dessert choices that are gluten free contain dairy, so I am out of luck.  But, if you are just gluten free, they have plenty of choices.  See the head chef in the Windjammer buffet and he will give you a tour of the gluten-free choices.  They usually have 2 gluten free desserts out at lunch and they are labeled gluten free. We have found that it works best to have assigned dining rather than anytime.  That way the waiters learn from the get go what our needs are, and we don't have to explain ourselves every night.  We also get a private table for 2.  I frankly got sick and tired of tablemates telling me a little bit of gluten would not hurt me.
×
×
  • Create New...