Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Still feeling symptoms

BrianG
 Share

Recommended Posts

BrianG Explorer
BrianG
Posted

Hello,

I have been gluten free since 3/31/21.  My levels have improved, aside from a slight iron deficiency.  I still feel foggy and tired most of the time though. Is it possible that this is still from lingering damage due to gluten in my body?  How long can it take for a person to feel normal.. I recognize that the way I feel could be from general stress but I'm not sure how to know.  Has anyone else experienced something like this? Has it taken a very very long time to feel fully better for anyone? 

Thanks

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

So if you have celiac disease and only recently went gluten-free the lingering symptom can be caused by the prolonged nutrient deficiencies that you've likely experienced, and it can take months to years to fully recover (we ran an article years ago on a study that found that the average time to recovery was 2 years).

This article might be helpful:

 

BrianG Explorer
BrianG
Posted
  • Author

Thank you. So I may still feel tired from celiacs for a very long time then, even though my blood levels have improved? My anemia, b12, and folic acid all improved to normal levels. 

GodsGal Community Regular
GodsGal
Posted

Yes. Healing is a long process. Good job with the blood vitamin levels!Hang in there, my friend!

MADMOM Community Regular
MADMOM
Posted
On 5/21/2021 at 11:34 AM, BrianG said:

Hello,

I have been gluten free since 3/31/21.  My levels have improved, aside from a slight iron deficiency.  I still feel foggy and tired most of the time though. Is it possible that this is still from lingering damage due to gluten in my body?  How long can it take for a person to feel normal.. I recognize that the way I feel could be from general stress but I'm not sure how to know.  Has anyone else experienced something like this? Has it taken a very very long time to feel fully better for anyone? 

Thanks

ive been gluten free since my dx on 1/11/21 - new like you - my symptoms have just started to feel like they are disappearing although i still on occasion feel a little pinch here and there - you will feel symptoms for awhile - as long as you are eating clean taking your vitamins and probiotics you will see a difference soon - stay positive 

BrianG Explorer
BrianG
Posted
  • Author
23 minutes ago, MADMOM said:

ive been gluten free since my dx on 1/11/21 - new like you - my symptoms have just started to feel like they are disappearing although i still on occasion feel a little pinch here and there - you will feel symptoms for awhile - as long as you are eating clean taking your vitamins and probiotics you will see a difference soon - stay positive 

Thank you! May I ask what probiotics you are taking? 

MADMOM Community Regular
MADMOM
Posted

garden of life - 50 billion cfu 

they are gluten casein dairy and soy free and have helped me so much - i don’t feel bloated or gassy and have no had any gi issues although mine were mild prior to my dx -i also take iron and vitamin d every day 

you can order on amazon 

Just now, MADMOM said:

garden of life - 50 billion cfu 

they are gluten casein dairy and soy free and have helped me so much - i don’t feel bloated or gassy and have no had any gi issues although mine were mild prior to my dx -i also take iron and vitamin d every day 

you can order on amazon 

 

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

Celiac.com Sponsor (A8-M):


  • 1 month later...
Jackie Garrett Collaborator
Jackie Garrett
Posted
On 5/21/2021 at 4:34 PM, BrianG said:

Hello,

I have been gluten free since 3/31/21.  My levels have improved, aside from a slight iron deficiency.  I still feel foggy and tired most of the time though. Is it possible that this is still from lingering damage due to gluten in my body?  How long can it take for a person to feel normal.. I recognize that the way I feel could be from general stress but I'm not sure how to know.  Has anyone else experienced something like this? Has it taken a very very long time to feel fully better for anyone? 

Thanks

It could be that your milk intolerant, there are alternative drinks to replace it with, i personally believe milk intolerance is where it all starts, making us  vulnerable to other intolerances. 

edgetunes Newbie
edgetunes
Posted

I was diagnosed almost 10 years ago. After about 3 years I went back and had an another endoscopy. I was having more digestive problems and thought it might be an ulcer. The Dr. thought I was cheating on my gluten free diet until he saw my villi were recovered. After the original diagnosis I started eating a lot of corn products. It eventually occurred to me that maybe it was the corn and soon after I stopped eating corn , I started feeling better. There are other foods that my digestive tract won't tolerate as I get older. Experiment with the foods you eat the most by eliminating them from your diet and see if it makes a difference.

Jackie Garrett Collaborator
Jackie Garrett
Posted
On 5/21/2021 at 4:34 PM, BrianG said:

Hello,

I have been gluten free since 3/31/21.  My levels have improved, aside from a slight iron deficiency.  I still feel foggy and tired most of the time though. Is it possible that this is still from lingering damage due to gluten in my body?  How long can it take for a person to feel normal.. I recognize that the way I feel could be from general stress but I'm not sure how to know.  Has anyone else experienced something like this? Has it taken a very very long time to feel fully better for anyone? 

Thanks

Hello Brian

There is a book written by Barbara Williams it’s called the Alkaline Diet, it’s not a very big book you could probably read it in an evening or two, it’s how we should be eating to stay well and more energised, I got mine from Amazon i think it says it all, I feel so much better eating like this. I fully recommend it. 

Posterboy Mentor
Posterboy
Posted
On 5/21/2021 at 10:34 AM, BrianG said:

Hello,

I have been gluten free since 3/31/21.  My levels have improved, aside from a slight iron deficiency.  I still feel foggy and tired most of the time though. Is it possible that this is still from lingering damage due to gluten in my body?  How long can it take for a person to feel normal.. I recognize that the way I feel could be from general stress but I'm not sure how to know.  Has anyone else experienced something like this? Has it taken a very very long time to feel fully better for anyone? 

Thanks

BrianG,

This thread might help you!

Good luck on your continued journey!

Posterboy,

Posterboy Mentor
Posterboy
Posted
On 7/13/2021 at 2:48 PM, edgetunes said:

I was diagnosed almost 10 years ago. After about 3 years I went back and had an another endoscopy. I was having more digestive problems and thought it might be an ulcer. The Dr. thought I was cheating on my gluten free diet until he saw my villi were recovered. After the original diagnosis I started eating a lot of corn products. It eventually occurred to me that maybe it was the corn and soon after I stopped eating corn , I started feeling better. There are other foods that my digestive tract won't tolerate as I get older. Experiment with the foods you eat the most by eliminating them from your diet and see if it makes a difference.

Edgetunes,

Try reading this thread.....it can explain how Corn (and Sorghum based flours) can sometimes cause similar symptom's in some Celiac's....

In short, Corn and Sorghum have high leucine amounts interfering with the bodies natural production of Niacin.....which can lead to Pellagra like symptom's in some Celiac's....

This article explains in more detail how Pellagra can develop in some Celiac's...

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

Good luck on your continued journey!

Posterboy,

  • 2 weeks later...
Phosis Explorer
Phosis
Posted

Many people with Celiac disease are still in the healing process at the 5 year mark after a gluten free diet has been adopted. Up to a third of people in fact do not have full intestinal healing by this point.

Be careful what you read about other peoples stories. They can be misleading and discouraging. Or statements like "you should heal three weeks after adopting the diet" that are widely reported on numerous health websites. That information is patently false for the most part.

For myself, a year and a half in, and most of my neurological symptoms have subsided...but it quite literally took this long. And that was even with my numbers dropping almost to 0 when I had blood work done. Don't be deceived - every BODY is different. Patience is a virtue though it is very difficult to sustain with this disease. You seem to be on the right track, so I would not fret at this point. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,095
    • Most Online (within 30 mins)
      7,748
    KARodd
    Newest Member
    KARodd
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac Maybe a Possibility?

      By Scott Adams · Posted

      Welcome to the forum, and thank you for sharing your story! It sounds like you’ve been through an incredible journey with your health, and it’s no wonder you’re starting to piece things together and wonder about celiac disease. Your experiences—from childhood through adulthood—paint a picture of symptoms that are often associated with celiac disease, though they can overlap with other conditions as well. The recurring sinus infections, being underweight as a child, chronic gastrointestinal issues, nutrient-related symptoms like cramps, and the persistent fatigue and brain fog are all things that many people with undiagnosed celiac report. Your reactions to gluten also stand out. The improvement in symptoms when you reduce or remove gluten, followed by the resurgence of pain and other problems when you reintroduce it, is a common experience for those with celiac or gluten intolerance. While your frustrations and trials with elimination diets might not have given you concrete answers yet, they’ve provided valuable clues. It’s also worth noting that celiac disease doesn’t always present in the classic way. Many people, like yourself, may not experience severe gastrointestinal distress but instead have “atypical” or extraintestinal symptoms like joint pain, menstrual irregularities, fatigue, and more. It’s a condition that can go undiagnosed for years, especially when symptoms are subtle, sporadic, or mistakenly attributed to other issues. The fact that you’ve sought alternative approaches to feel better shows just how determined you’ve been to find relief, even without a definitive diagnosis. Given your history and how your body responds to gluten, it would be worth exploring celiac disease further with a medical professional. Before removing gluten completely, it’s important to get tested while you’re still eating it, as going gluten-free beforehand can affect the accuracy of the results. A blood test for celiac antibodies (like tTG-IgA) is usually the first step, and if positive, an endoscopy may follow to confirm the diagnosis. If the testing process feels daunting, keep in mind that getting answers could give you clarity and help guide your health decisions going forward. Whatever the outcome, you’ve already made significant strides in identifying triggers and managing your symptoms. Your awareness and persistence are key, and this community is here to support you as you continue to seek answers. This article might be helpful. It breaks down each type of blood test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      Hi, I am new!  (Although I've used this forum as a reference over the past couple of years.) I'm just looking for some initial reactions to if I actually might possibly have Celiac Disease, or if I'm reaching here.  I have had lifelong health issues and not once has a doctor suggested I look into celiac. I always thought it was basically an extreme allergy that needed an EpiPen, and I know that's not me.  However, I stumbled upon some symptoms, realized I was wrong, and after some research I'm almost shocked at what I have found.  It seems like anything I've ever struggled with has a potential correlation to this disease!  I'm in my 40's, now.  Here is my journey to date... Issues as a Kid: tons of allergies, and had sinus infections all the time... however I didn't have hayfever-like allergies and the scratch tests didn't register much, it was more that when I was exposed to allergens (like say I spent hours with a cat) I was certain to get a sinus infection and it lasted months. was extremely skinny and everyone always said I was anorexic (I wasn't) always getting sick and the illnesses hang on for a long time always cold (my favorite thing to do is sit in front of a space heater or be out in 90 degree weather) intermittent bad constipation (still happens but not as severe) horrible toe cramps that would wake me up in the middle of the night As I got older (teenage/college years): acid reflux diagnosis learned that beer made me EXTREMELY sick, cannot tolerate it horrible issues with menstrual cycle - I wasn't regular, had awful cramps and PMS, sometimes cannot function the first couple of days night terrors/sleep walking more stomach issues - I learned I couldn't have black coffee.  I often had issues especially when traveling.  For example I finally noticed a pattern that I could never, ever eat at a hotel buffet spread - it would always make me sick afterwards. More recent problems: always tired periodic pain on right side that can be so painful I can't stand up straight. Have had all kinds of scans and doctors always say I'm fine.  I was so sure I had gallstones or my liver was failing but... nope. chest pain brain fog not diagnosed but many, many ADHD symptoms lots of inflammation, am overweight now toe cramps evolved into leg/calf cramps None of my symptoms from any era of my life ever really resolved, except I went from being skinny to ~20/30 pounds overweight, and as I got older I got less outright sinus infections.  Largely due to the pain in my right side and the fact that I always, always seem to pick up every illness, especially when traveling, I started pursuing alternative medicine paths... I did the Pritikin lifestyle, I tried an elimination diet, I followed the Root Cause Protocol, I did a Leptin reset.  A lot of these paths recommend removing gluten, and in the past year or so some of my symptoms have gone away!  Specifically less issues with toe cramps, sometimes the side pain would go away for a long time, and my acid reflux got much better.  But, because I was never diagnosed with any specific intolerance, I wasn't militant about the gluten - I had cut out dairy, soy, all kinds of things.  So I would say cross-contamination is ok, or make an exception at a group outing. Then one day, I just got frustrated and ate some normal slices of pizza... and my side pain came back!  I started doing research and now I'm here and wondering... could I have actually had this my whole life??!? Thoughts and observations welcome.           
    • Wheatwacked
      Ground meat absolutely full of gluten?

      By Wheatwacked · Posted

      "grass-fed" meat by definition cannot contain wheat as it means the animal is only fed grass  organic meat can be fed wheat feed
    • Scott Adams
      Weird Symptoms

      By Scott Adams · Posted

      Your symptoms would not be typical celiac disease symptoms, but still could be related due to possible nutrient deficiencies.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      Everyday life

      By Scott Adams · Posted

      This is a difficult situation, and one that your employer may not take seriously. It's possible that they don't have a way to accommodate your issues, but I don't know much about your work environment. Obviously moving you to another work area would be ideal, but would or could they do that? If not, you might be stuck having to wear a K95-type mask at work to avoid breathing any particles, but they still could end up on your skin. Another alternative is searching for a new job.
×
×
  • Create New...