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

Gluten free, encouragement needed please!!

rt-116
 Share

Recommended Posts

rt-116 Explorer
rt-116
Posted

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
GFinDC
Posted

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
rt-116
Posted
  • Author
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
GFinDC
Posted
(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
cyclinglady
Posted

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
pikakegirl
Posted

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
CottenCandyDream
Posted

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
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.