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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,426
    • Most Online (within 30 mins)
      7,748
    AnythingForHim
    Newest Member
    AnythingForHim
    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

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

      By Wheatwacked · Posted

      Click on the image to make it larger.  Maybe doesn't work on phone browser,  That was from 2021. Absolutely, they should be tested, The point is you have symptoms that the doctors don't understand and malabsorption may be the cause.   Not trying to.  But much of your rant includes refeferences that may indicate multiple nutritional deficiencies.     Some countries also have tax incentives and financial aid for Celiacs.   Celiac disease is recognized as a disability under the ADA because it substantially limits major life activities like eating and digestive function. Protections require reasonable accommodations in public accommodations, including schools (504 plans), colleges, and hospitals. These often include providing safe, gluten-free food, though they do not force restaurants to provide it.  As far as your recovery, eat gluten free.  Get healthier now and worry about diagnosis later.  Many here on the forum have gone ten or more years looking for a diagnosis, with many doctors and many misdiagnosis along the way. It really doesn't matter why, but you cannot eat  gluten.  That is what is important.  With gluten out of the way, maybe the doctors can make sense of your remaining symptoms.  If you need the ADA, then a medical diagnosis is the way to go.  Meantime you are delaying your recovery from whichever celiac disease or NCGS and the inevitable step one of Gluten Free Diet. tWe come to share experiences and maybe it will help someone. In reality, I don't care.  By the way I have stopped 6 medications Against Medical Advice because they did not do their job and the side effects were crippling. This is a lifelong fight for your life.  Pick you battles carefully.  Assume the worst, celiac disease, and deal with it.  Denial is not just a river in Egypt. Pleased to meet you, too.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I can't read any of this... the print is too small and it looks like all you eat is milk, cereal cookies and some fruit..?   and some coffee?   
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      fortunately you don't need to understand anything that doesn't directly affect you.  🤗 you earlier assumed I was deficient in nutrients and minerals due to celiac malabsorption but...... now it doesn't matter? because why? it might mess up your deficiency argument?  if you don't know the difference between having actual celiac disease and NCGS....!!!! correct me if I'm wrong but actual celiac disease causes actual physical damage to your body and increases your risk of certain cancers... just as a start. I have an identical twin sister- IF I have celiac disease, chances are she may too. I have a daughter and other first degree relatives... you also get ADA protections with an actual celiac diagnosis.  but again, not your decision to make  nor to understand. but to suggest that there is no valid reason to find out for sure is incomprehensible on a board dedicated to celiac disease. if you ask me but you didn't so- nevermind.   don't worry though, another member has declared that in her expert opinion based on who knows what- that I don't have celiac!!!  but instead I am "full of beans" and probably killing myself for eating such scary things, I don't know.   if you think you can diagnose me off one single biomarker and a hunch of some sort...based on your history and some research study that you think is relevant- um, well, Glad to meet you, Dr McCoy aka Bones. 🫠 I did not know this was a place where strangers want to play doctor  I am hoping to hear from other members who are not so quick to make judgements and... stuff, let's just leave it at that... perhaps there aren't any.  time will tell I guess                    
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

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

      By Wheatwacked · Posted

×
×
  • 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.