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

Newly Diagnosed - Please Help!

Jae

By Jae
in Coping with Celiac Disease

Recommended Posts

Jae Newbie
Jae
Posted

Hi,

 

I was informed yesterday after a biopsy and blood tests that I have been suffering with coeliac disease for a number of years and the villi in my intestine is pretty damaged.....

 

I have today not eaten anything gluten AT ALL yet I am more bloated and lethargic than I have been in a long time (my coeliac symptoms are mostly vitamin dificiencies...

 

Is it usual to have this reaction when you first convert to Gluten free or could I have a intolerence to something in the Gluten free products?

 

many thanks for your help

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

I think 1 day is a little soon to worry about other intolerances.   :D

 

It an take months for the intestines to heal and then the deficiencies to get better.

 

Sometimes, when someone goes gluten-free, they eat differently.  Maybe more fiber.  Maybe less fiber.  Maybe more sugar., etc.  

 

Read the newbie thread for some basic info & give it some time

 

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Jae Newbie
Jae
Posted
  • Author

I think 1 day is a little soon to worry about other intolerances.   :D

 

It an take months for the intestines to heal and then the deficiencies to get better.

 

Sometimes, when someone goes gluten-free, they eat differently.  Maybe more fiber.  Maybe less fiber.  Maybe more sugar., etc.  

 

Read the newbie thread for some basic info & give it some time

 

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Thank you so much for your reply... I just assumed I wouldnt feel like this after cutting out Gluten, I will just be patient and give it time..

 

thanks again :)

flowerqueen Community Regular
flowerqueen
Posted

Hi,

 

I was informed yesterday after a biopsy and blood tests that I have been suffering with coeliac disease for a number of years and the villi in my intestine is pretty damaged.....

 

I have today not eaten anything gluten AT ALL yet I am more bloated and lethargic than I have been in a long time (my coeliac symptoms are mostly vitamin dificiencies...

 

Is it usual to have this reaction when you first convert to Gluten free or could I have a intolerence to something in the Gluten free products?

 

many thanks for your help

Hi,

 

It took a few months for my body to settle down after giving up gluten and wheat.  It won't be an overnight miracle; think of all the damage that the gluten has done to your body over time, so it may take a while before you start to feel anywhere near 'normal'.  I found that my body went into detox mode after giving up gluten and wheat, and that can take its time to resolve itself.  

 

We are all different though, so bear this in mind.  I was also like you, I was malnourished after all the years of not absorbing vitamins and minerals.  My ferritin levels were rock bottom and I was so weak, I had to walk with the aid of a stick.  Don't be too disheartened, you are just starting out, the good thing is, you've had your condition diagnosed, now give your body a little time to heal. :)

nvsmom Community Regular
nvsmom
Posted

I agree. It can take months to get better.  My blood tests were still abnormal (slightly) at a year gluten-free, and I didn't feel better until 2 years gluten-free, although there were large improvements during that time.

 

Plus, many people experience a withdrawal when they go gluten-free. Headaches, fatigue, stomach issues can all get worse before they get better.  Remember that if things take a temporary turn for the worse.

 

Good luck and welcome to the boards.  :)

Jae Newbie
Jae
Posted
  • Author

Thank you everyone for your advice... Is weight gain also an issue once having b12 injections and eating gluten free? I lost a lot of weight quickly before I was diagnosed but now I'm putting it back on, which isn't a bad thing, just concerned I won't stop now

foam Apprentice
foam
Posted

It can take years to get better, some people dont recover. B12 shots will fix most of your curent problems within hours of the first shot. Theres a chance youve developed further immune system disease but hopefully not. Youll have to find your own way with foods but my tip is more fats, less carbs.

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

Celiac.com Sponsor (A8-M):


Archived

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

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. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.