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

Gluten free, encouragement needed please!!


rt-116

Recommended Posts

rt-116 Explorer

Hi everyone. Might be a bit of weird ask... but I was wondering if anyone could tell me about any negative experiences / difficulties they had / problems that persisted during the initial few months /year of going gluten free. 

I've seen a variety of experiences and many positive, but i've been gluten free for two months now (not very long I know!) and still do have occasional loose stools, stomach aches and pains and  a general feeling that I "should" be feeling better than this by now. 

 

As I said I am aware two months may not be long to expect changes, but I would really appreciate someome else letting me know they initially struggled but did feel better in the end! 

Thank you so much to anyone for any advice. 


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Um, yeah! :)

I had symptoms for years after going gluten-free.  Some caused by additional food intolerances that I didn't learn about for a while.  Some were caused by low vitamin D, selenium and iodine levels.  But I did get better.

It can help to simplify your diet.  Stay away from processed foods for a few months and also stay away from sugar, carbs, dairy and oats.  It does take time for the immune system to settle down and also for the gut to heal and any nutritional problems to correct.  That timeline varies by each person.

There was a study some years ago that showed gut damage in children up to 18 months after going gluten-free.  So time is your friend.

rt-116 Explorer
25 minutes ago, GFinDC said:

Um, yeah! :)

I had symptoms for years after going gluten-free.  Some caused by additional food intolerances that I didn't learn about for a while.  Some were caused by low vitamin D, selenium and iodine levels.  But I did get better.

It can help to simplify your diet.  Stay away from processed foods for a few months and also stay away from sugar, carbs, dairy and oats.  It does take time for the immune system to settle down and also for the gut to heal and any nutritional problems to correct.  That timeline varies by each person.

There was a study some years ago that showed gut damage in children up to 18 months after going gluten-free.  So time is your friend.

Thank you so much for your response, this is encouraging to know. Perhaps I am being v impatient! 

Would it be possible for you to tell me what symptoms you had who u persisted? I am low on vitamin D as well so this would be really useful go see if we are similar. Thanks so much again! 

GFinDC Veteran
(edited)

Hi,

I had trouble sleeping and joint pain from the low vitamin D.  I am not sure what other symptoms it caused but those both resolved when I got my D levels higher.  I also felt better mentally.

You might want to check and make sure your multi vitamin has boron in it too.  Boron helps the body retain vitamin D.

Edited by GFinDC
cyclinglady Grand Master

Please be patient.  Anemia was my main symptom.  It took a few months for that to resolve (hemoglobin and ferritin) taking iron supplements prescribed by my GI.    It was a good sign that I was healing from celiac disease.  I did have an advantage.  My husband had been gluten-free for 12 years prior to my diagnosis.  So, I knew the diet well.  But I made classic mistakes.  Like trying to consume gluten-free processed foods.  While my healed hubby could consume them, I could not.  I had  several food intolerances that I eventually identified.  Some  resolved (lactose) and some still linger to this day (Xanthan Gum, mushrooms, nuts, garlic onions).  

While I just had anemia, I realized that I had other issues as well which I attributed to aging.  Those seemed to resolve about a year after my diagnosis.  So, it takes time to heal.  You will get there.  Stay the course!  

pikakegirl Enthusiast

Hi, I am 15years diagnosed and gluten-free. After a decade of sickness before diagnosis I decided to be militant gluten-free. I called manufacturers and farms to research how food was grown, harvested and packaged for all my purchases. It took 6months for my CRP inflammation to be in normal range as well as my Celiac blood test markers. At first as I was healing, things seemed ok but I began having new food intollerences. Especially to things I ate all the time like tomatoes, beans, dairy etc. I found I had to eat things I rarely ate like eggs, rice, apples. I wish my Dr had done a full blood vitamin panel on me as well as a genetic MTHFR blood test. I eventually found I needed supplementation for D3, K2, l-methyfolate, B2 and to avoid folic acid containing foods. I also developed a Citric/Ascorbic acid intolerance. I need a FODMAP diet as well to stop gas/bloating. I started by doing an elimination diet down to 10 foods which I had no symptoms. After my GI healed I added 1 food at a time to see if I tolerated it well and in what volume. I did food blood allergy tests but they have a 50% false positive ratio and it told me I was fine on foods that make me ill when I ingest them so that was a waste of money for me. Watch for fatigue after eating as an intollerence sign as well as GI issues. It seems daunting but once you have a dietary rhythm down you can get your life on track.

CottenCandyDream Apprentice

It took me a year to start feeling better I remember all I ate was rice and water for an entire year my doc was concern because I lost so much weight. Your stomach is super sensitive right now, so take it easy, try making your own soup, this is my favorite recipe right here https://iowagirleats.com/homemade-chicken-noodle-soup/


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



Celiac.com Sponsor (A8-M):



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,940
    • Most Online (within 30 mins)
      7,748

    pulsarwork
    Newest Member
    pulsarwork
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ZandZsmom
      Are you using the same mixer that you used for your gluten containing baking? That could be your culprit.
    • trents
      I would ask for a total IGA test (aka, Immunoglobulin A (IgA) and other names as well) to check for IGA deficiency. That test should always be ordered along with the TTG IGA. If someone is IGA deficient, their individual celiac IGA test scores will be artificially low which can result in false negatives. Make sure you are eating generous amounts of gluten leading up to any testing or diagnostic procedure for celiac disease to ensure validity of the results. 10g of gluten daily for a period of at least 2 weeks is what current guidelines are recommending. That's the amount of gluten found in about 4-6 slices of wheat bread.
    • jlp1999
      There was not a total IGA test done, those were the only two ordered. I would say I was consuming a normal amount of gluten, I am not a huge bread or baked goods eater
    • trents
      Were you consuming generous amounts of gluten in the weeks leading up to the blood draw for the antibody testing? And was there a Total IGA test done to test for IGA deficiency?
    • jlp1999
      Thank you for the reply. It was the TTG IGA that was within normal limits
×
×
  • Create New...