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 and celiac worsens

tinyang27

Recommended Posts

tinyang27 Newbie
tinyang27
Posted

I was diagnosed with celiac a few years back and not understanding the disease I continued to eat as I wished.  In November I became very ill and hospitalized where an EGd revealed an ulcer and my celiac had worsened so I started a gluten free diet.  I am now 100% gluten free and had an egd two weeks ago and my celiac continues to worsen.  My dr is frustrated along with my self because I know I have been following my diet.  Has anyone else experienced this and what has Dr's suggested doing.  Has anyone tried Celiact supplement.  

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
 

I was diagnosed with celiac a few years back and not understanding the disease I continued to eat as I wished.  In November I became very ill and hospitalized where an EGd revealed an ulcer and my celiac had worsened so I started a gluten free diet.  I am now 100% gluten free and had an egd two weeks ago and my celiac continues to worsen.  My dr is frustrated along with my self because I know I have been following my diet.  Has anyone else experienced this and what has Dr's suggested doing.  Has anyone tried Celiact supplement.  

I am sorry that you are still ill.  It can take years to recover from celiac disease because 1) the cure is based on the patient's adherence to a gluten free diet, 2) the gluten-free diet has a very steep learning curve (e.g. cross contamination) and 3) a damaged gut often can not process even gluten-free goods like corn, soy, lactose (intolerances may vary among celiac patients).  I think most folks here on the program take one to two years to heal.  

You can follow this gluten-free diet as recommended by celiac experts:

Open Original Shared Link

The diet is basically all whole foods that you prepare yourself.  No processed gluten-free foods.  

Keeping a food and symptom diary is helpful.  

There is no celiac supplement that will aid or prevent intestinal healing from celiac damage per all the leading researchers.  They are working on some drugs, but they are not available yet.  Best to really learn to go gluten free.  You may want to consider working with a dietitian who is really celiac-savvy.  

I am glad that you are taking better steps in improving your health!  

Need more help or support?  Talk to us!  

GFinDC Veteran
GFinDC
Posted

Right, there aren't any quick fixes to celiac disease.  It's really helpful theugh to eat a simple diet of home made food, and avoid eating out in restaurants for at least 6 months.  Cooking all your own food is helpful because you control the ingredients.

Recovery times vary a lot, but 2 weeks is not enough time by a long shot.  18 months to 24 months is probably more like it.  But the recovery time depends on how well you avoid any trace of gluten in your diet.  Even a crumb of gluten can slow down recovery.

  • 2 weeks later...
knitty kitty Grand Master
knitty kitty
Posted

Vitamin deficiencies may delay healing. Ask your doctor to test for deficiencies! 

Many Celiacs have poor absorption for an extended period of time and their vitamin stores get depleted.  Some vitamins can't be stored and must be absorbed every day. Yet with poor absorption, eating enough to make up for a deficiency is very difficult.  

Vitamin deficiencies can cause other health problems.  CyclingLady had anemia  due to a vitamin B12 deficiency.  I had a niacin deficiency that caused pellagra.  A deficiency of vitamin D causes depression.  Vitamin A deficiency causes nightblindness.  

Check with your doctor!

 

Livingnaturally Newbie
Livingnaturally
Posted

Hey! I'm sorry you feel so bad. That's never fun. It can take a long time to get relief on a gluten free diet for some, especially if you've had the condition for a long time or have a lot of damage. It's also pretty easy to think you're 100% gluten free when you're not. Try cutting out gluten free packaged foods and trying to eat whole foods. That way if you're having a reaction to tiny amounts of gluten (some react to the amount in packaged gluten free foods) then that should help. There could be an underlying condition like a bacterial overgrowth in your digestive tract. Something called small intestinal bacterial overgrowth is common in people with celiac disease. Vitamin deficiencies are common as well. Trying to focus on staying as healthy as possible and looking for common places you may still be getting sick is important, like from skin care products, packaged foods, eating out, sharing a kitchen with others who arent gluten free. All worth looking into! Good luck.  I know celiac disease can really be a struggle sometimes. You'll get healthy, try to look towards the future with positivity even though it seems hard to do right now :)

Elizabeth    

Jmg Mentor
Jmg
Posted

Lot's of good advice above. 

I can't say the science is definitive but google leaky gut and have a look at some of the recommendations around healing the gut: Open Original Shared Link 

Open Original Shared Link

I think there's some good advice there for coealiacs. 

I don't know if you enjoy cooking, but I made a lot of bone broths when I was trying to heal my gut. I've incorporated pro biotics, good fats, nutrient dense foods etc. I try to eat clean and keep gluten-free processed foods and grains to a minimum. 

Think of it another way. Your gut has been a battleground for many years. Even once the war is over the trenches won't repair themselves. Every meal is a chance to help that progress. 

Best of luck :)

cyclinglady Grand Master
cyclinglady
Posted
 

Lot's of good advice above. 

I can't say the science is definitive but google leaky gut and have a look at some of the recommendations around healing the gut: Open Original Shared Link 

Open Original Shared Link

I think there's some good advice there for coealiacs. 

I don't know if you enjoy cooking, but I made a lot of bone broths when I was trying to heal my gut. I've incorporated pro biotics, good fats, nutrient dense foods etc. I try to eat clean and keep gluten-free processed foods and grains to a minimum. 

Think of it another way. Your gut has been a battleground for many years. Even once the war is over the trenches won't repair themselves. Every meal is a chance to help that progress. 

Best of luck :)

Here is some of the "new"  science by Dr. Fasano (a leading celiac researcher) helping to validate "leaky gut":

Open Original Shared Link

I love this video too:

Your advice is excellent! 

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. DebD5
      - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      Interestingly enough, while I hear you. I completely disagree. Gluten has not been 100% removed. There’s still trace amounts under the regulated amount per millions allowed. I gave only figured out in the last year, while reading chats on this site, of other celiacs still having issues and how they figured it out. If enough companies allow slight amounts o...
    2. Scott Adams
      - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      I understand why that feels frustrating, because the labeling can definitely seem confusing. In the case of products like King Arthur’s gluten-free bread flour that contain gluten-free wheat starch, the wheat starch has been specially processed to remove the gluten proteins that trigger celiac disease. Because it originates from wheat, U.S. labeling laws s...
    3. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Doctors
      7

      Second chance

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should...
    4. Russ H
      - Russ H replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Concerning GP advice

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the...
    5. DebD5
      - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      Exactly. What about King Arthur gluten free flour selling a gluten free bread flour containing “gluten free wheat starch” and says in allergens “contains wheat.” I don’t care if it contains a trace amount of wheat ok’ed by the food industry. For a celiac…100% gluten free and that’s all is acceptable. Hard alcohols and ciders and hard seltzers say gluten free...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,649
    • Most Online (within 30 mins)
      7,748
    jhdcps
    Newest Member
    jhdcps
    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

    • Scott Adams
      Second chance

      By Scott Adams · Posted

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
    • Russ H
      Concerning GP advice

      By Russ H · Posted

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the gut lining normally recovers on a strict gluten-free diet, and this happens much faster in children than in adults.
    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
      Concerning GP advice

      By trents · Posted

      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Here are some articles on cross-reactivity and celiac disease:      
×
×
  • 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.