Jump to content
  • 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

Glutening Episode Recovery Time?


jthomas88

Recommended Posts

jthomas88 Newbie

My daughter (17) was diagnosed with gluten intolerance about 2 months ago, after 4 years of health issues probably all stemming from NCGS/other food intolerances/malabsorption (but no D). She's been very good (except for one slip-up) about keeping away from all known gluten. She has, however, had two or three "spells" where she feels good for three or four days, then is so sick (fatigue, ache, dizziness/faintness) that she misses school for the next two and a half to three weeks. I could force her to go each day, but I'd almost literally have to stay with her all day, propping her up and carrying her from class to class (and I'd have to quit my job to do so, so that's not really an option.)

In most of the posts I've read here, people have two or three bad stay-at-home type days and then can (happily or unhappily) resume their normal schedule. Are there others who take 2-3 weeks to become functional humans again?

We're waiting on the results from the ImmunoLabs' BloodPrint1 food intolerance test, but that won't be back for at least another week - and Mommy needs to be patted on the shoulder and told "There, there, dear. It'll be okay eventually." :(


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



Celiac.com Sponsor (A8-M):



Guest BERNESES

It got better for me the further I got into the diet because I was getting glutened less. now, generally speaking, unless I really mess up, I get glutened mostly by cross-contamination (like eating out etc) and that for me is usually one hard day down. I'm a teacher so Ii caan usually still make it out of the house and go to work.

If I actually get glutened (not just trace amounts but actually eat something with gluten in it) it's about a week. I could not go to school for probably the first three days.

I think as your gut heals and you get better at the LIFESTYLE, not just the diet, you will find that it happens less and less often. Hope that iss the pat on the shoulder you needed. ((Hugs))), beverly

hez Enthusiast

I am so sorry that your daughter is not feeling great. For me it takes about a month to be back to normal after being glutened. I am a mother of two small kids so even if I am sick there is no down time. I take immodium i-d and keep going. It did take me a long time (6-7 months) after getting my dx before I started to feel better. Have you considered or thought about if depression is playing a role in her not wanting to leave the house? Just a thought. I know that I went thru some depressed times during my teenage years and I did not even have this disease then. Please come to the board if you are feeling overwhelmed and need some support. This is a great group of people who are here to help others. Pat on the back from me :)

Hez

jerseyangel Proficient

Hi--Sorry you daughter is having such a hard time. When I have a gluten reaction, I will have D from about 2 hours after I ingest the gluten (always thru CC, never on purpose) to about 3-5 days later. During that time, I also have nausea and lightheadness. I would only actually be "down" for those 3-5 days, although I don't feel normal for 2 weeks. I had another thought reading your post--has your daughter been tested for anemia? I was severely anemic for years--her reaction sounds familiar. The good news is that after 6 months on the gluten-free diet, my anemia cleared for the first time in years.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,208
    • Most Online (within 30 mins)
      7,748

    Gail Brown
    Newest Member
    Gail Brown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.