Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1):


  • Join Our Community!

    Ask us a question in our celiac / gluten-free forum.

  • Kelly Carter

    Healing on a Gluten-Free Diet: What Does Recovery from Celiac Disease Really Look Like?

    Kelly Carter
    5 5
    Reviewed and edited by a celiac disease expert.

      Even after two years of a gluten free diet and clean blood tests, these patients are just as damaged as someone who is just diagnosed with celiac disease.


    What does recovery look like? Image: CC BY 2.0--alexander_haneng
    Caption: What does recovery look like? Image: CC BY 2.0--alexander_haneng

    Celiac.com 05/08/2020 - Can someone with celiac disease really heal?

    This is sort of how I see the villi of someone with Celiac disease - flattened with big gaps between.



    Celiac.com Sponsor (A12):




    I missed this one, but in November 2019, there were some results from the Nexvax study involving endoscopic biopsies. It confirms what we already knew - blood tests and biopsy results are unrelated and celiac patients are sicker that they should be.

    The study lists that 93 patients underwent endoscopic biopsies as part of their participation in the Nexvax2 clinical trial. Only SIX patients had Marsh 0 or 1 damage. Marsh 0 or 1 damage is considered normal. Thirty had Marsh 2 damage and fifty-six were Marsh 3a or 3b. The good news is that some people had complete healing. But out of 93 patients, 86 people had enough damage to warrant a celiac diagnosis.

    More specifically, seventy-eight patients were on a gluten free diet for greater than two years and seronegative (had negative blood tests). 72 out of 78 patients have Marsh 2 or higher damage. Fourty -five or 58% of those tested still had Marsh 3 or higher damage. Typically, Marsh 3 or higher damage is required for celiac diagnosis.

    So, even after two years of a gluten free diet and clean blood tests, these patients are just as damaged as someone who is just diagnosed with celiac disease. That is disheartening. Now, we always knew there was a chance that people with celiac may never heal. We also know that blood tests and damage are not correlated and this proves that again. How do we know the damage is ongoing without endoscopic biopsies? We don't at this point.

    Look, I can go off on this and talk about how frustrating it is. How we really need some way to know what is going on in our bodies. How we need something to help us because this diet alone isn't working and these results prove it. But we just have to be patient. I know scientists are working on it. I know volunteers are volunteering to participate in trials. I'm just ready!

    Here is the study.

    5 5

    User Feedback

    Recommended Comments

    The fact that so many celiacs are not healing is disheartening.  Note that the study said in the conclusion:

    “Quantitative histology in well‐oriented biopsy sections reveals villus atrophy in the majority of patients with coeliac disease who appear well controlled on gluten‐free diet.”

    I have been participating on Celiac.com forum for six years.    I have noticed that most people who have celiac disease do not receive expert follow-up care which includes visits to a registered dietician who specializes in the gluten free diet.  Patients are left to fend for themselves without support.  All treatment relies on their own personal ability to avoid gluten.  Obviously, based on this and other previous studies, healing is not occurring very often.  While they appear to be well controlled, the reality is that they are not.  

    Celiac antibodies testing was designed to help diagnose, but not really to monitor patients on a gluten free diet.  Yet doctors use the blood tests to monitor patients.   Most likely because it is cheaper and less evasive than an endoscopy.  Most doctors simply ask the patient how well they are avoiding gluten.  I am sure most patients tell their doctor that they are following a gluten diet — and they and their doctors believe it.  

    I consider myself to be pretty good at avoiding gluten.  My husband was gluten free some 12 years before my diagnosis.  I feel that I have mastered the diet.  

    Five years after my diagnosis, I had a repeat endoscopy.  Biopsies revealed a healed small intestine.  How did I accomplish this?  

    1.  I eliminated almost all processed foods, even gluten free or certified gluten free foods.  Let’s be real.  Most gluten-free processed food is junk which is not conducive to healing.  It often contains ingredients that I would never find in my pantry and I can not even pronounce.

    2.  I never eat out with the exception of  100% dedicated gluten free restaurants.  Let me repeat that, I never eat out except at dedicated gluten-free restaurants.  

    3.  I check all my medications.  I do not blindly assume that my pharmacist (who is helpful) will insure my medication is gluten free.  I always check the federal websites and contact the manufacturer.  

    4.  I live in a 100% dedicated gluten free home.  With two people who must be gluten free (and the bread winners), our health trumps over our kid or any guest who wants to consume gluten in our home.  I can not express how nice it is knowing that I can let down my guard while at home.  

    5.  I have identified and addressed additional food intolerances due to a previously damaged GI tract.  

    6.  I have determined that 20 ppm, which was based on about 60 study participants, is not best for me.  If processed foods are purchased, I prefer certified gluten free which is usually tested below 10 ppm.   

    7.  I never consume oats.  There is too much controversy over oats, especially mechanically sorted oats.  Like news on social media, it is difficult to determine who to trust.  So, I prefer to avoid oats.  This works for me and frankly was recommended years ago before the gluten free processed food market boom.  

    The gluten free diet does work for many (excluding those with refractory celiac disease).  I think that most doctors and celiac disease patients do not take the gluten free diet seriously.    It can be difficult to manage because a lot of time is involved in food preparation.   Patients often do not get support from family and friends, which is very disheartening — maybe even worse that the diagnosis itself.  

    I would never take medications that would allow me to consume gluten.  But, I now see the need to help those celiacs who are struggling and are not healing.  I hope they find a cure soon.  

     

    Share this comment


    Link to comment
    Share on other sites

    Join eNewsletter

    Kelly,

    Thank you for sharing!

    It is not always easy to talk about "Negative" news.....but if from the negative we can learn something positive....then it is (can be) helpful to be frank and honest in our assessment....

    I set out to confirm by diagnosis when I received it and two differential diagnosis's kept coming up that for me made as much sense as Celiac disease.

    1) Low Stomach and/or 2) SIBO and maybe a combination of both...

    Celiac.com ran an article about this 15+ years ago showing that 2/3 of those who don't get better on gluten free diet should consider SIBO as a valid differential diagnosis.

    Here is the Celiac.com article about this association.

    https://www.celiac.com/articles.html/bacterial-overgrowth-of-small-intestine-common-in-treated-celiac-disease-r791/

    Note: This was in treated Celiac's who were still eating gluten free....

    SIBO should be considered and ruled out for those Celiac's still having GI problems after two years on a gluten free diet.

    If you also have SIBO or have SIBO instead you probably also have a Thiamine Deficiency....

    https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

    I was never diagnosed as having SIBO....I received a Celiac diagnosis....but believe I also could been diagnosed as having SIBO....there is so much overlap in the diagnosis process....

    Benfotiamine is a  fat soluble form found the diabetic section.....if anyone things they also have SIBO in addition to their Celiac disease it might benefit those still suffering with GI problems after to two years to trial Benfotiamine and a B-Complex to see if helps....I know it did me!

    I hope this is helpful but it is  not medical advise.

    Posterboy,

    Share this comment


    Link to comment
    Share on other sites

    Join eNewsletter

    I reared a gluten-free child since 1978, and was diagnosed myself in 2000 after a few years of vague symptoms.  So, I know the diet well, and do not cheat.  Yet intermittently I've certainly had episodes of what seemed like a gluten hit.  Rarely and most severely it's been after being at a restaurant who said their meal was gluten-free but probably had cross-contamination, but other times I've eaten only at a gluten-free place and still get a hit.  Now (in California) we've been on complete lockdown for 8 weeks, and my belly has not felt so good in years.  No, I have not done any testing.  But when things loosen up, I don't think I'll be eating out very much.  For what this comment is worth.  My daughter (who became celiac around 2005) is having the same experience.   Hmmm.

    Share this comment


    Link to comment
    Share on other sites

    Join eNewsletter

    On 5/9/2020 at 9:08 AM, Posterboy said:

    Kelly,

    Thank you for sharing!

    It is not always easy to talk about "Negative" news.....but if from the negative we can learn something positive....then it is (can be) helpful to be frank and honest in our assessment....

    I set out to confirm by diagnosis when I received it and two differential diagnosis's kept coming up that for me made as much sense as Celiac disease.

    1) Low Stomach and/or 2) SIBO and maybe a combination of both...

    Celiac.com ran an article about this 15+ years ago showing that 2/3 of those who don't get better on gluten free diet should consider SIBO as a valid differential diagnosis.

    Here is the Celiac.com article about this association.

    https://www.celiac.com/articles.html/bacterial-overgrowth-of-small-intestine-common-in-treated-celiac-disease-r791/

    Note: This was in treated Celiac's who were still eating gluten free....

    SIBO should be considered and ruled out for those Celiac's still having GI problems after two years on a gluten free diet.

    If you also have SIBO or have SIBO instead you probably also have a Thiamine Deficiency....

    https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

    I was never diagnosed as having SIBO....I received a Celiac diagnosis....but believe I also could been diagnosed as having SIBO....there is so much overlap in the diagnosis process....

    Benfotiamine is a  fat soluble form found the diabetic section.....if anyone things they also have SIBO in addition to their Celiac disease it might benefit those still suffering with GI problems after to two years to trial Benfotiamine and a B-Complex to see if helps....I know it did me!

    I hope this is helpful but it is  not medical advise.

    Posterboy,

    Thank you, @Posterboy!  I won't go into the details, but after 10 yrs of gluten-free diet, I began getting flare-ups that I was associating with environmental mold--which may not be incorrect, but may also be exacerbated by the thiamine issue.  A long series of reading, paying attention to dreams, more research, paying attention to diet versus symptoms... has led me to thyroid... and possible thiamine deficiency.  I've never once doubted that SIBO was part of the overall equation.  (In fact, genetic factors aside, I think it's THE cause of Celiac. But I'm neither doctor nor scientist. Just someone trying to feel healhty and not support the pharmaceutical industry unless it's my last resort.  

    Share this comment


    Link to comment
    Share on other sites

    Join eNewsletter

    Sc'Que,

    You should definitely should suspect SIBO....it can occur with/in Celiac's...

    Here is a couple a nice articles about it from very well health...

    https://www.verywellhealth.com/does-celiac-disease-raise-your-risk-for-sibo-4129368

    https://www.verywellhealth.com/villous-atrophy-562583 

    You might also suspect your medicine too....I had a particular bad reaction to the "Stans" BP medicine's....commonly known as Benicar....and it has a class effect....and why I said "Stans"....

    Here is great article showing how Obese people often have SIBO and treating their SIBO helped their Thiamine Deficiency...entitled "Small intestinal bacterial overgrowth and thiamine deficiency after Roux-en-Y gastric bypass surgery in obese patients"

    https://www.ncbi.nlm.nih.gov/pubmed/19083422 

    And not just after Gastric Bypass either....it is before the Gastric Bypass as well...that a 1/3 of those considering gastric bypass was low  in Thiamine...

    https://academic.oup.com/cdn/article/3/Supplement_1/nzz039.P18-060-19/5517562 

    So having a Gastric Bypass didn't fix the underlying problem....so if you are still having GI problems despite being gluten free for 2 years you should definitely investigate to see if treating an undiagnosed Thiamine deficiency could help you.

    As for an infection like mold or in this case UTI's ....triggering a Thiamine deficiency it does happen and often goes undiagnosed....Here is a study about it....where doctor's recognized it for what it was a Thiamine deficiency...describing a Case Study of a Thiamine deficiency in the USA...

    https://www.amjmed.com/article/S0002-9343(12)00164-7/fulltext 

    quoting

    "Therefore, it is recommended that thiamine replacement treatment be started when clinical suspicion is high, even before laboratory testing confirms the diagnosis of thiamine deficiency. A heightened clinical suspicion and earlier diagnosis might have shortened the duration of hospital stay and prevented the extensive diagnostic work-up, and eventually hastened the recovery."

    If you suspect SIBO then taking Benfotiamine might be something worth trialing to see if helps you!

    As mentioned before Benfotiamine is a nice fat soluble widely available form found in the diabetic section....take this with a B-complex (couple times a day) and a Magnesium Glycinate (anytime) and/or a Magnesium Citrate with meals.....and you should begin to notice a difference like better energy and vivid dreams after a month...and a sustained difference in 3 to 4 months....

    I hope this is helpful but it is not medical advise. I can only tell you it helped me!

    2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

    Posterboy by the Grace of God,

    Share this comment


    Link to comment
    Share on other sites

    Join eNewsletter

    Guest Patrick Ray

    Posted

    This is just an opinion, but I see plenty of people eating trashy diets. Just because it's gluten free it doesn't mean you're eating in a manner that promotes a healthy gut. TONS of studies show fiber is rough on the gut just as a start. 

    I did not start to feel and act healed despite being gluten free for 6+ years post celiac disease diagnosis until I did a 3 month elimination diet. All sorts of foods were problematic for me including eggs and nightshades. 

    We have horrendous diets as Americans 

    Share this comment


    Link to comment
    Share on other sites

    Join eNewsletter

    Been gluten-free since 2009, minus a few accidents.  And I've felt mostly great during those 10+yrs.  I get a lot of steps in at a high-paced restaurant job, I eat well most days per week and I exercise multiple days/wk during the summer.  The thing that I do that is the most unhealthy is that I tend to drink a lot, though I'm rarely drunk in the common sense.  The health problems I've been having (and which have been slowly developing) were triggered on both occasions when my apartments sprung leaks and developed mold issues in my bedrooms--once at my old place 5+yrs ago, once at my current place 2 yrs ago.  And so I'd been assuming that it was a fungal reaction that just wouldn't go away. But I'm beginning to suspect otherwise. 

    I'm also that crazy guy who's all about the science, but hates the medical profession because all they ever seem to want to do is cover up your symptoms with pharm.  Symptoms are the things that try to tell you something's wrong, but most doctors would rather cover them up than find the root cause and eliminate it.  At this point, I'm considering dietary shortcomings, SIBO and other things related to the parasympathetic nervous system, aka Vagus nerve, such as the trickledown effects of vitamin deficiency.    

    Hopefully the new doctor I've signed up for doesn't treat me like the last one back in 2007.  

    Share this comment


    Link to comment
    Share on other sites

    Join eNewsletter

    Fasting, fasting, fasting. That is helping me a lot.

    I want to know what the 7 who didn't show damage did to heal.  "But out of 93 patients, 86 people had enough damage to warrant a celiac diagnosis." What did the other 7 patients do to heal?

    Share this comment


    Link to comment
    Share on other sites

    Join eNewsletter

    On 5/12/2020 at 10:04 PM, sc'Que? said:

    The health problems I've been having (and which have been slowly developing) were triggered on both occasions when my apartments sprung leaks and developed mold issues in my bedrooms--once at my old place 5+yrs ago, once at my current place 2 yrs ago.  And so I'd been assuming that it was a fungal reaction that just wouldn't go away. But I'm beginning to suspect otherwise. 

    Sc'Que,

    You might not be wrong about the mold....Celiac.com just recently published an article about environmental toxins possibly raising the risks for Celiac's...

    As for the mold issue here is some research that might help you...

    https://www.yeastinfection.org/metabolites-mycotoxins-and-acetaldehyde-what-are-they/

    You might give drinking a break too....it might be making your conditions worse....a double whammy as the article says...

    If you do continue to drink Alcohol you might consider changing what you drink....here is some research about it...entitled "Alcoholic Beverages Produced by Alcoholic Fermentation but Not by Distillation Are Powerful Stimulants of Gastric Acid Secretion in Humans"

    https://pubmed.ncbi.nlm.nih.gov/9155575/

    If it is SIBO producing more stomach acid.....could help your symptoms...taking BetaineHCL (with meals) and your favorite drink (water/tea etc.) could be helpful too!

    I hope this is helpful but it is not medical advise.

    Posterboy,

    Share this comment


    Link to comment
    Share on other sites

    Join eNewsletter

    Thiamin, Riboflavin, Niacin, B6, Folate, B12, Calcium, Copper, Vitamin D, Iron, vitamin K, Magnesium, Zinc. These have all been flagged for Celiac patients as high risk for deficiency. There are others.  Potassium is high risk for inflammatory bowel disease patients. Choline and iodine are high risk for all Americans. Even if you are gluten-free, if you are not getting enough of all of the essential nutrients, you may not get worse, but you will not heal.

    100% of the RDA is the MINIMUM daily required intake for a healthy individual to maintain minimum health. If one has a malabsorption issue like celiac disease, Crohn's, etc. that person needs more than the minimum just to tread water.

    Share this comment


    Link to comment
    Share on other sites

    Join eNewsletter



    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Guest
    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.


  • About Me

    I was diagnosed with Celiac in 2012 and have been gluten free ever since.  I live in Atlanta with my husband and two medium sized children.  I run a blog at FatCeliac.net that covers real life issues with celiac disease, upcoming drug trials, and try to be a reliable source of information for the celiac community.


  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17):




  • Related Articles

    Jefferson Adams
    Celiac.com 06/18/2009 - According to the results of a recent study, complete recovery of intestinal mucosa occurs very rarely in patients with celiac disease, despite adherence to a gluten-free diet.
    Generally, when people with celiac disease go on a gluten-free diet, they can expect to enjoy some healing of small intestinal mucosa. However, new data casts doubt over how much of this benefit is experienced in adult celiac patients.
    In order to analyze the factors that influence histological outcome of a gluten-free diet in a large cohort of adult celiac patients, a team of researchers reviewed data on 465 consecutive celiac patients studied before...

    Jefferson Adams
    Celiac.com 07/15/2015 - Current celiac disease call for a follow-up biopsy taken 1 year after diagnosis to monitor gut recovery. Many celiac patients show incomplete gut recovery at that time, but there’s not much research to help doctors figure out how significant this might be.
    A team of researchers recently investigated associated factors and the significance of imperfect gut recovery in patients in whom the follow-up had been completed. The research team included Henna Pekki, Kalle Kurppa, Markku Mäki, Heini Huhtala, Harri Sievänen, Kaija Laurila, Pekka Collin and Katri Kaukinen.
    They are variously affiliated with the Medical School and the...

    Jefferson Adams
    Celiac.com 01/30/2017 - A team of researchers recently set out to analyze potential changes in occurrence of complicated coeliac disease over the last 25 years.
    The research team included W. Eigner, K. Bashir, C. Primas, L. Kazemi-Shirazi, F. Wrba, M. Trauner, and H. Vogelsang. They are variously affiliated with the Division of Gastroenterology and Hepatology, Department of Internal Medicine III, Medical University Hospital of Vienna, Vienna, Austria, and with the Department of Pathology at the Medical University of Vienna in Vienna, Austria.
    The team included and evaluated a total of 1,138 patients based on time of first presentation at the Medical...

    Jefferson Adams
    Celiac.com 03/14/2017 - Recent studies of adult celiacs have suggested that complete, not just partial, mucosal recovery and healing is possible, but, in many cases, may take longer than is currently understood.
    Recently Dr. Hugh James Freeman of the Department of Medicine, Gastroenterology, University of British Columbia, Vancouver, BC, Canada, conducted a study to assess healing time in celiac patients. In this study, 182 patients (60 males, 122 females) referred for evaluation of symptoms, including diarrhea and weight loss, were selected only if initial biopsies showed characteristic inflammatory changes with severe architectural disturbance.