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

Help - How Long Until You Get Better And What Sets You Off?


Montana Julie

Recommended Posts

Montana Julie Newbie

Hi, All-

I was recently-diagnosed with celiacs, and I've been trying to learn everything I can.

I've been on my new diet about 1.5 months, and I've overall been lots better. However, I sometimes get recurrences of my old symptoms, and I really don't know why. I did make some mistakes early on (oats) but I'd like to think I got those ironed out.

I ate some Korean food with suspicious soy sauce (I asked, but I don't think they checked the label) on Sunday, and was "off" on Monday and I'm really hurting today.

Could that be the cause? Seems like it's been too long... How long do you guys go between eating something bad and feeling bad?

Also - for you "veterans" - how long does it take for the new diet to really work and for you to stabilize? Do you get recurrences? Perhaps stress-induced?

Anyway - I'll appreciate your help!!!

Thanks!

Montana Julie


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



Celiac.com Sponsor (A8-M):



gf4life Enthusiast

Most soy sauces are fermented with wheat. If you can ask to check the lable next time or bring your own wheat free soy sauce and have them make your food with that it might be safer.

For me it usually start with gas, bloating and fatigue within a few hours and then by about 8-12 hours the pain starts. This lasts for a few days. The diarrhea hits usually by day 2-3, and last a few days. The fatigue lasts usually for about 2 weeks and that is one of the worst parts about it. I also get DH (the Celiac rash) and the sores take usually a month or two to go completely away. I currently have some on my neck, back and thighs from a glutening 2 weeks ago. Needless to say I try really hard not to get glutened!

That was the first time in months that I have been glutened and I am still not sure how it happened. It was either at the VBS my kids were at that week or when we ate out. Most likely the VBS, since my daughter was already feeling bad the day before we ate out and the pain hit me wihile we were eating out, which didn't fit my normal pattern. I was assisting the kitchen at the church with my kids gluten-free snacks, but the CC potential was extreme! Expecially when they fed my daughter's gluten-free snack to someone else and had to make her a new one when I wasn't there...They swear they didn't give her any pretzels in her "trail mix", but I feel there must have been enough crumbs around to contaminate it. I could have picked up enough gluten just from being in the kitchen, but who really knows. In fact i didn't know for sure it was gluten until I got the rash. I ONLY get that from gluten. The other symptoms could have been something else.

Sorry I'm rambling...

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,072
    • Most Online (within 30 mins)
      7,748

    3rdearesl
    Newest Member
    3rdearesl
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...