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

One Study Said 60% Of Celiacs Are Not Healing Just With Diet.


1desperateladysaved

Recommended Posts

1desperateladysaved Proficient

This was posted by the administer recently.  Open Original Shared Link

 

I guess there may be a lot of reasons for not healing .  This is a thread to see what your ideas are.  Also, do other studies find that 60% are not healing?

 

 


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



Celiac.com Sponsor (A8-M):



Adalaide Mentor

There is no reference to back up that number so for all we know they pulled that 60% out of their you-know-whats. On top of that, it looks like nothing more than a sponsored story by a company that has been pushing the media very hard lately in an attempt to get more guinea pigs for their study so they can sell drugs to celiacs so they can get money. "News" about celiac doesn't come from drug pushers.

IrishHeart Veteran

Diana

Read the entire article. No references. That number came from where exactly?

scroll to the bottom of the "article"

It's an ad for people to be part of a drug research study.

It's not a fact that 60% of celiacs do not heal.

 

.

nvsmom Community Regular

I agree with Adalaide and Irish, not much there to back that up.  That being said, I wouldn't be surprised if about half of celiacs continue to have some problems after going gluten-free. If you've been damaging yourself with gluten for years, not everything will be repairable. I personally have made HUGE gains in my health since going gluten-free over a year ago but I still have lingering health issues... I just can't be sure if it is still from celiac or if it is some other autoimmune health problem (possibly kicked off by celiac disease) that is causing it all.  KWIM?

 

If I regain my full health, I'll be pleasantly surprised. I am pretty pleased with the improvements so far.  :)

IrishHeart Veteran

Furthermore, I find this type of article "alarmist" and inappropriate.

 

The articles come through the website --anything that is related to "gluten" and "celiac"

floating around out there is on a constant media loop. so to speak.

 

They run the gamut from blog articles to fluff pieces to book reviews to recipes to actual published medical literature.

 

Just because it was posted by admin, does not mean anyone endorses it or that someone has proofread it for accuracy..

Pegleg84 Collaborator

The article also says that as long as you wash the gluteny stuff off the cutting board, you shouldn't get glutened... and I think we all know that unless it's one of those glass ones, then a shared cutting board (for example) could be causing low-level cc no matter how well you wash it

So their idea isn't that even if you take every precaution possible (completely gluten-free household, no eating out, etc) you might still have symptoms from long term consequences of damage, rather than damaging yourself more through CC.

As much as something that prevents mild cc symptoms would be nice, it's probably going to have a huge $$ on the bottle.

 

Yeah, the 60% seems to have come straight out of the air.

kareng Grand Master

There are some studies that say that about 60% do not entirely heal.  But we should read the actual studies before panicking &  to see things like:

 

- compliance to the diet

- were they actually biopsied or just going on anecdotal  reports of stomach aches. gas, etc which may be caused by other things

- what was actually considered continued damage

- probably some other things I haven't thought of.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Should have added that the article didn't give a time frame, did it?  It may be referring to this study.  After 5 years 85% were healed. 

 

Open Original Shared Link

 

"Of patients with Marsh IIIA, IIIB, or IIIC lesions, histologic remission was seen in 65.0% within 2 years, 85.3% within 5 years, and 89.9% in long-term follow-up"

GFinDC Veteran

This was posted by the administer recently.  Open Original Shared Link

 

I guess there may be a lot of reasons for not healing .  This is a thread to see what your ideas are.  Also, do other studies find that 60% are not healing?

 

Hi Diana,

 

To answer your question, I think sometimes people don't heal quickly because they are experiencing damage from other food intolerances, or they are not really as gluten-free as they think they are.  Especially for beginners, it seems to take a while to get used to avoiding gluten.

NoGlutenCooties Contributor

Just one point to add... it also depends on how healthy the person ate before and after going gluten free.  Simply being gluten free does not equate to healthy.  If the person ate like crap before the diagnosis then their body is likely to be weaker and more depleted and therefore take longer to heal.  And if the person continues to eat like crap after going gluten free then it will take them a long time to heal - if they ever really do.  Unfortunately, many people do not know how to eat healthy, nor do they understand the importance of it.

  • 2 weeks later...
T.H. Community Regular

I wonder if they were referencing the same study as the Celiac Disease Center is for their 60% number:

Open Original Shared Link

 

Unfortunately, the celiac center doesn't reference the research specifically, either. But the research center makes more mention of the fact that diet compliance can affect the results.

 

The study results seem to vary, otherwise. I wonder if they are more consistent when you look at them by area, perhaps? Some differences in brands or gluten free food laws that might affect the patients' food? Or maybe better patient education and support?

 

I know the study Kareng mentions is from the Netherlands, but a study in Italy and in the USA had different results. It seems weird that the results would be so different without something else going on that is maybe not being taken into account by the researchers, you know? :-/

 

Open Original Shared Link

Open Original Shared Link

Archived

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

  • 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 replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

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

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

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    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
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      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
      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
      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
      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.
×
×
  • 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.