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

Will Someone Tell Me What's "normal" Following Starting A Gluten-free Diet


Sarah-0608

Recommended Posts

Sarah-0608 Newbie

Hi all...I'm Sarah and I was diagnosed via blood test (although the endoscopy was negative) 4 weeks ago. I was wondering what was a general idea of the recovery time, and what your symptoms were like, because I still feel nearly as sick as I did before starting the gluten-free diet and being only 18 I didn't think it should take that long to heal. Should I consider that this is not celiac? Or am I just messing this diet up? When am I going to be better??


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Sarah, going gluten free is just the beginning. Your body needs time to rid itself of the toxins, then it needs time to heal. You didn't get sick overnight, and you will not feel better overnight. 4 weeks really is not a long time, for some, it takes 2 yrs to heal, some, like me do not heal totally, but i was sick for more yrs that you are old, before finding out about celiac disease.

Keep eating gluten free, and soon you will feel better each day. Are you watching all vitamins for gluten, any meds...gluten hides in so many places???

Treen Bean Apprentice

It took me about a year and a half to heal. Just be patient with your body. It will there.

God Bless,

Treen Bean

ravenwoodglass Mentor

It takes time. Be sure to check all your toiletries, makeup, lotions etc and also if you have a significant other a kiss after they eat or drink gluten is off limits until they have throughly brushed their teeth. Also try to eat as simply as you can right now. Fresh whole foods rather than processed and if you live in a gluten home make sure that you and your family or roommates become real familiar with all the precautions we need to take. Hang in there and post any questions you need to or vent if you get frustrated. We have all been there.

Green Eyes Rookie

Hi Sarah,

Just thought I would chime in!!! I'm kinda at a disadvantage in giving information on how to heal. I wasn't sick before diagnosis, and feel good after diagnosis. Although it has certain advantages, sometimes I don't know when I've done something wrong. It takes a good amount of gluten for me to even have a reaction.

Having said that. Pay attention to what your body is telling you. I take every mistake (glutening) as a learning experience.

Do you have the "unsafe ingredients" list? That helped me more than anything. Be sure what you are eating is gluten free. Being 18 with celiac is difficult. Hang in there it does get better.

Jennifer

mftnchn Explorer

Also, you might experiment with dairy free. The damage to the intestinal villi impacts production of carb digestion enzymes, in particular lactase. So milk is often a problem initially. From there, if you don't improve, you might consider other carbs (check out the SCD for an approach to that), other food intolerances because many of us are prone to them. Be aware that soy has also been shown to cause villi damage in some people, so that is often another one that is problematic. Food intolerances are common among us because the damage to the intestine leads to leaky gut and proteins getting into the bloodstream where antibodies form. It may or may not settle down in the future.

Hang in there and keep posting...there is lots of help available here.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,930
    • Most Online (within 30 mins)
      7,748

    Mhp
    Newest Member
    Mhp
    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

    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
×
×
  • 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.