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. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Water filters are a potential problem for Celiac Disease

      What non organic or nonorganic molecules from a plastic bottle of water can trigger a reaction that I have only experienced during an auto immune experience? There really should not be any organic molecules in such a bottle. I seen a thread where it was mentioned that his refrigerator water filter tested positive for gluten when he had it checked. If...
    2. Scott Adams
      - Scott Adams replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Reverse Osmosis (RO) Water

      It’s understandable to want to be cautious, especially after experiencing symptoms. However, there is currently no scientific evidence that reverse osmosis or standard activated carbon water filters expose people to gluten in amounts that would trigger celiac disease. Gluten is a protein, and if any starch-based binder were used in filter manufacturing, ...
    3. Scott Adams
      - Scott Adams replied to JoJo0611's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Yeast extract

      It’s understandable to look for bigger explanations when you’re dealing with complex symptoms, but the current scientific consensus does not support the idea that celiac disease evolved as a defense against Candida. Celiac disease is a well-characterized autoimmune condition triggered specifically by gluten in genetically susceptible individuals (HLA-DQ2...
    4. Scott Adams
      - Scott Adams replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      14

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      It sounds like you’ve put a lot of effort into tracking patterns, and that kind of awareness can be helpful. With celiac disease specifically, though, the only confirmed immune trigger is gluten. Reactions to dairy are common after diagnosis because intestinal damage can temporarily reduce lactase, leading to lactose intolerance — but that’s different from ...
    5. Scott Adams
      - Scott Adams replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Water filters are a potential problem for Celiac Disease

      I completely understand wanting to track down every possible source of exposure after a celiac diagnosis, especially when symptoms are distinct and repeatable. That said, there’s currently no credible evidence that bottled water — including filtered water products like Gatorade water — contains gluten from filter materials. Activated carbon filters are t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,571
    • Most Online (within 30 mins)
      7,748
    Chanty
    Newest Member
    Chanty
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • YoshiLuckyJackpotWinner888
      Water filters are a potential problem for Celiac Disease

      By YoshiLuckyJackpotWinner888 · Posted

      What non organic or nonorganic molecules from a plastic bottle of water can trigger a reaction that I have only experienced during an auto immune experience? There really should not be any organic molecules in  such a bottle. I seen a thread where it was mentioned that his refrigerator water filter tested positive for gluten when he had it checked. If I went to physician to get checked for other possible triggers from a water bottle, I don’t think that will go anywhere. Again, distilled water containers cause no reactions. I’m not an industry expert, but something is there.  I don’t think that this is a case of microplastics causing this. Too bad we can’t call upon some third party investigation.  
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      It’s understandable to want to be cautious, especially after experiencing symptoms. However, there is currently no scientific evidence that reverse osmosis or standard activated carbon water filters expose people to gluten in amounts that would trigger celiac disease. Gluten is a protein, and if any starch-based binder were used in filter manufacturing, it would not pass through RO membranes or remain in finished bottled water at clinically meaningful levels. Plain water — filtered, RO, or bottled — does not contain gluten unless it is intentionally added (which would require labeling). Steam-distilled water is certainly safe, but it is not considered medically necessary for people with celiac disease. If reactions are occurring, it may be helpful to explore other potential explanations with a healthcare provider rather than assuming filter-related gluten exposure.
    • Scott Adams
      Yeast extract

      By Scott Adams · Posted

      It’s understandable to look for bigger explanations when you’re dealing with complex symptoms, but the current scientific consensus does not support the idea that celiac disease evolved as a defense against Candida. Celiac disease is a well-characterized autoimmune condition triggered specifically by gluten in genetically susceptible individuals (HLA-DQ2 or HLA-DQ8). While some laboratory studies have shown that certain Candida proteins (like Hwp1) share limited sequence similarities with gluten or tissue transglutaminase (tTG), that does not mean Candida causes celiac disease or commonly produces false-positive tTG tests in clinical practice. Anti-tTG IgA remains a highly specific and validated marker for celiac when used appropriately (especially alongside total IgA testing and, when indicated, biopsy). IgG antibodies to Saccharomyces cerevisiae (ASCA) are more commonly associated with Crohn’s disease and are not considered diagnostic for celiac. There is ongoing research into microbiome interactions and immune cross-reactivity, but at this time there is no evidence that yeast exposure from foods triggers celiac autoimmunity in people without gluten exposure. If symptoms persist despite a strict gluten-free diet, it’s best to work with a gastroenterologist to rule out other conditions such as IBD, SIBO, non-celiac food intolerances, or refractory celiac disease rather than assuming a fungal-driven mechanism.
    • Scott Adams
      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

      By Scott Adams · Posted

      It sounds like you’ve put a lot of effort into tracking patterns, and that kind of awareness can be helpful. With celiac disease specifically, though, the only confirmed immune trigger is gluten. Reactions to dairy are common after diagnosis because intestinal damage can temporarily reduce lactase, leading to lactose intolerance — but that’s different from casein sensitivity. IgG food panels, including yeast, are generally considered markers of exposure rather than proof of clinical intolerance. Aged cheeses like Irish cheddar are typically gluten-free, though they do contain casein and natural cultures. If symptoms are strong and repeatable, it may be worth working with a gastroenterologist or allergist to sort out true allergies, intolerances, or other GI conditions rather than assuming multiple cross-reactive immune triggers.
    • Scott Adams
      Water filters are a potential problem for Celiac Disease

      By Scott Adams · Posted

      I completely understand wanting to track down every possible source of exposure after a celiac diagnosis, especially when symptoms are distinct and repeatable. That said, there’s currently no credible evidence that bottled water — including filtered water products like Gatorade water — contains gluten from filter materials. Activated carbon filters are typically bound with food-grade binders, and if any starch were used in manufacturing, it would not remain in the finished water at measurable or biologically active levels. Plain water itself does not contain protein, and gluten is a protein. Major beverage companies also have strict allergen control programs, and gluten would need to be declared if intentionally added. If symptoms are occurring consistently after certain products, it may be worth discussing with a physician to explore other potential triggers, but at this time distilled water is not considered medically necessary for people with 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.