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

It Takes Time To Heal

Claire

Recommended Posts

Claire Collaborator
Claire
Posted

I posted this once but it never showed up so here goes again. If you see this twice please excuse. Claire

RECOVERY OF HEALTH OF THE INTESTINE TAKES TIME AFTER STARTING GLUTEN-FREE DIET

In this study, 158 people with celiac disease had their small intestines examined after starting a gluten-free diet. After 2 years, 65% of the people had healed intestines; after 5 years, 85.3% had healed, and beyond that 89.9% had healed. Children recovered up to 95% within 2 years and 100% in the years after. For 10.1% of people, there was little or no recovery of health of the intestine.

Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

This link could be helpful in a lot of the other posts too.

Thank you for posting.

Laura

Guest BERNESES
Guest BERNESES
Posted

Claire- Thank you SO much for posting this. I know it's not great news but it's definitely reassuring to those of us who aren't progressing as quickly as we thought we would. . I know that I expected the gluten-free diet to work miracles over night, and while it might for some, it takes a lot longer for others. Thank you! You made my night with this one. Sigh.... (of relief)

Claire Collaborator
Claire
Posted
  • Author
Claire- Thank you SO much for posting this. I know it's not great news but it's definitely reassuring to those of us who aren't progressing as quickly as we thought we would. . I know that I expected the gluten-free diet to work miracles over night, and while it might for some, it takes a lot longer for others. Thank you! You made my night with this one. Sigh.... (of relief)

So glad this was a good post for you. Hope it is for others too. So many people here seem to be struggling with this issue. So many with such high hopes and then getting discouraged when it doesn't quite work out that way. That discouragement causes a lot of very negatives feelings - not good for recovery. This piece shouldn't discourage people from checking into exacerbating food intolerances as a cause of their discomfort as well. Claire

jerseyangel Proficient
jerseyangel
Posted

Claire--I found the article most interesting and encouraging, also. I have an appt. with an allergist, who's nurse told me on the phone tests for food allergies and also does the RAST test. I told her I was a Celiac who seems to be having issues with other foods. I go the 1st. week of March. I've looked into the independant labs--I may still try going that route, but deceided to go and talk to this dr. first. Thanks for posting the article :)

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Wow -- what an eye-opening article. It's good that your body can heal -- but this idea that a lot of MD's have -- that you'll be "fine" in a few months -- according to some things I've read, some things I've heard -- was certainly shot down. Jersey Angel -- find out if your allergist is also an IMMUNOLOGIST. Usually it is a combined specialty. If that is the case, I would talk in-depth about the immunology portion of your disease as well. Allergies are one thing -- immunology issues are quite another. Found this out the hard way. Good luck to you. Will be keeping you in my thoughts and prayers.

thomas3000 Rookie
thomas3000
Posted

I think that article is interesting of course, but lacking in vital information. As I have said before, most if not all people with celiac disease have some type of infection(s) that delays healing. That's where testing for GI pathogens come into play.Using Hawthorne Berry extract and L-glutamine will speed up the healing process. I started a thread on this topic called "Radio program on Gluten Intolerance" and Dr. Bill Timmins ND explains this in great detail...

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

Celiac.com Sponsor (A8-M):


Guest BERNESES
Guest BERNESES
Posted

Thomas- I started taking LGlutamine and I HIGHLY recommend it. I will listen to the radio program you posted later- thank you for doing that.

Claire Collaborator
Claire
Posted
  • Author

Hi Thomas.

Most non-technical articles on celiac are not 'thorough' - even wrong on some of the specifics and long on omission but some, like this one, contain a gem that makes up for any shortcomings. The posted paragraph is information badly needed by many on this forum who are discouraged because they set high expectations for 'recovery' that are not supported by the evidence.

Celiacs with neurological issues need to watch the intake of L-glutamine - if they even take it at all. Claire

jerseyangel Proficient
jerseyangel
Posted
Wow -- what an eye-opening article. It's good that your body can heal -- but this idea that a lot of MD's have -- that you'll be "fine" in a few months -- according to some things I've read, some things I've heard -- was certainly shot down. Jersey Angel -- find out if your allergist is also an IMMUNOLOGIST. Usually it is a combined specialty. If that is the case, I would talk in-depth about the immunology portion of your disease as well. Allergies are one thing -- immunology issues are quite another. Found this out the hard way. Good luck to you. Will be keeping you in my thoughts and prayers.

Lynne--Thank you for the good advice--I will certainly keep it in mind when talking to the doctor :)

ebrbetty Rising Star
ebrbetty
Posted

claire, thank you for posting the link...I came on here tonight thinking I'm going to give up on the gluten-free diet starting tomorrow. My blood work came back borderline positive the first week of Jan [after years of severe daily stomach pain] ..I've been gluten-free since and was about 80% gluten-free for 4 weeks before the blood tests.

I'm still having stomach pain everyday, not as bad as before but its still a problem, even gluten-free bread hurts. my family thinks I should give it more time, and after reading that article I might continue the diet, but I think I should be feeling a whole lot better at this point.

would someone please tell me where the post on the radio program is?

thanks, Betty

i canary Rookie
i canary
Posted

Claire,

Thank you for posting this article. I'm taking a long time to heal and was beginning to wonder why.

Canary

I posted this once but it never showed up so here goes again. If you see this twice please excuse. Claire

RECOVERY OF HEALTH OF THE INTESTINE TAKES TIME AFTER STARTING GLUTEN-FREE DIET

In this study, 158 people with celiac disease had their small intestines examined after starting a gluten-free diet. After 2 years, 65% of the people had healed intestines; after 5 years, 85.3% had healed, and beyond that 89.9% had healed. Children recovered up to 95% within 2 years and 100% in the years after. For 10.1% of people, there was little or no recovery of health of the intestine.

Open Original Shared Link

Claire Collaborator
Claire
Posted
  • Author
claire, thank you for posting the link...I came on here tonight thinking I'm going to give up on the gluten-free diet starting tomorrow. My blood work came back borderline positive the first week of Jan [after years of severe daily stomach pain] ..I've been gluten-free since and was about 80% gluten-free for 4 weeks before the blood tests.

I'm still having stomach pain everyday, not as bad as before but its still a problem, even gluten-free bread hurts. my family thinks I should give it more time, and after reading that article I might continue the diet, but I think I should be feeling a whole lot better at this point.

would someone please tell me where the post on the radio program is?

thanks, Betty

Don't give up the gluten-free diet! Some of the results of neglected or untreated celiac are very, very serious p far worse than anything you have right now. Do investigate other causes of your discomfort. Food intolerance really flare up after going gluten-free - so consider that you have more than one thing going on and probably did even before going gluten-free. Claire :rolleyes:

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. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    2. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    4. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    5. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • 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.