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

Gluten free 3 years, still fatigued

lhu7
 Share

Recommended Posts

lhu7 Apprentice
lhu7
Posted

I have had celiac for 3 years, but have had stomach issues all my life. My stomach issues have clear up for the most part. A few of the symptoms I deal with on the daily is fatigue, brain fog, bloating and constipation. I have always had an aversion to fruit and vegetables, which could be arfid. I used to be a go getter and willing to do anything, but the past years I have felt depressed and alone. I just had a check up endoscopy and everything looked good except my disaccharide levels were all low. I am thinking maybe something that to do with pancreatic enzymes and not properly digesting food. I crave carbs and eat a lot of them, which might signal that they aren’t being broken down. Thoughts? 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

"arfid"?

Have you been checked for SIBO?

lhu7 Apprentice
lhu7
Posted
  • Author
4 minutes ago, trents said:

"arfid"?

Have you been checked for SIBO?

It is Avoidant Restrictive Food intake disorder. It is an eating disorder, but had nothing to do with meat to loose weight. It deal with how people perceive the food group that they hate the texture/ taste of. I have been checked and I don’t have it.

trents Grand Master
trents
Posted

So are you saying you have been checked for SIBO or for ARFID?

lhu7 Apprentice
lhu7
Posted
  • Author
Just now, trents said:

So are you saying you have been checked for SIBO or for ARFID?

Sorry. I have been checked for SIBO and I don’t have it. I am going to a clinic soon that specializes in that to see if I do have ARFID. 

trents Grand Master
trents
Posted

What about histamine intolerance? https://www.healthline.com/health/histamine-intolerance#symptoms

lhu7 Apprentice
lhu7
Posted
  • Author
4 minutes ago, trents said:

What about histamine intolerance? https://www.healthline.com/health/histamine-intolerance#symptoms

Yes, I don’t have that 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

One thing that seems to pop up here over and over is casein/dairy intolerance. Have you tried going dairy-free for a while to see if it helps?

Posterboy Mentor
Posterboy
Posted
7 hours ago, lhu7 said:

I have had celiac for 3 years, but have had stomach issues all my life. My stomach issues have clear up for the most part. A few of the symptoms I deal with on the daily is fatigue, brain fog, bloating and constipation. I have always had an aversion to fruit and vegetables, which could be arfid. I used to be a go getter and willing to do anything, but the past years I have felt depressed and alone. I just had a check up endoscopy and everything looked good except my disaccharide levels were all low. I am thinking maybe something that to do with pancreatic enzymes and not properly digesting food. I crave carbs and eat a lot of them, which might signal that they aren’t being broken down. Thoughts? 

lhu7,

I don't have your condition....

But people typically reduce their food content when they are low in Thiamine,.....and it explains your fatigue symptom's well...

A quick google search shows Thiamine is involved in satiety and hunger....

In fact the eating disorder of Anorexia can be triggered by low Thiamine levels.

Here is some research about it...

Entitled  "Thiamine deficiency induces anorexia by inhibiting hypothalamic AMPK"

https://pubmed.ncbi.nlm.nih.gov/24607345/

And this on ARFID...

Entitled  "Nutritional Deficiency Disease Secondary to ARFID Symptoms Associated with Autism and the Broad Autism Phenotype: A Qualitative Systematic Review of Case Reports and Case Series"

https://pubmed.ncbi.nlm.nih.gov/33221247/

quoting from their study on nutritional deficiencies in ARFID...

"The second-largest percentage of published cases (17.1% [13 of 76]) involved eye disorders secondary to vitamin A deficiency. Other primary nutrient deficiencies reported were thiamine vitamin B-12, and vitamin D"

This nice article explain how a Thiamine deficiency can trigger autonomic conditions....

https://awaken.com/2021/02/the-overlooked-vitamin-that-improves-autoimmune-disease-and-autonomic-dysfunction

Thiamine works best taken in the FAT Soluble forms like Benfotiamine, Lipothiamine or Allithiamine and always with a Meal and preferably Magnesium Glycinate or Magnesium Citrate.....

Both Magnesium and Thiamine aka Vitamin B1 will help your fatigue..

I wrote a nice Posterboy blog post about why Celiac's should take Thiamine at least for a "Season in Time"....

Maybe it will help you to read it...

This great thread on Thiamine might help you too!

Good luck on your continued  journey!

I hope this helpful but it is not medical advice.

Posterboy,

Kate333 Rising Star
Kate333
Posted

I used to be a go getter and willing to do anything, but the past years I have felt depressed and alone.

+++++++++++++++

Hi Ihu7.   Your comment above caught my eye.

Fatigue, brain fog (and even GI probs) are often classic PHYSICAL symptoms of severe, chronic depression/anxiety--quite understandable in response to your recent celiac disease diagnosis, not to mention this pandemic (I have been there and had the same symptoms).  I suggest you discuss with your primary or gastro docs and ask for a referral for counseling.  It is so important to have someone to discuss your feelings with on a regular basis, whether a trained counselor or support group.  You may even benefit from a low-dose medication to help reduce your depression/anxiety.  I have found both forms of treatment beneficial in helping relieve my depression/anxiety/insomnia.

Best of luck to you.      

Kate333 Rising Star
Kate333
Posted

Le me also mention that there are many websites/articles online that describe the physical symptoms of depression/anxiety and great tips for helping to reduce them.  I especially like anxietycentre.com, which has an article with a cool chart that lists the many physical symptoms of depression/anxiety.  Reading, learning, and understanding about the many ways in which stress can affect the body (the mind-body connection) was really quite revealing, helpful for me.

GFinDC Veteran
GFinDC
Posted
On 6/11/2021 at 12:31 PM, lhu7 said:

I have had celiac for 3 years, but have had stomach issues all my life. My stomach issues have clear up for the most part. A few of the symptoms I deal with on the daily is fatigue, brain fog, bloating and constipation. I have always had an aversion to fruit and vegetables, which could be arfid. I used to be a go getter and willing to do anything, but the past years I have felt depressed and alone. I just had a check up endoscopy and everything looked good except my disaccharide levels were all low. I am thinking maybe something that to do with pancreatic enzymes and not properly digesting food. I crave carbs and eat a lot of them, which might signal that they aren’t being broken down. Thoughts? 

Craving carbs could be a diabetes symptom.  Not feeling well, being tired is also a possible diabetes symptom.  Digestive problems are another possible diabetes symptom.  Maybe you can get your A1C level checked?

Scott Adams Grand Master
Scott Adams
Posted

You are not alone, and there are many celiacs who report some of the things you're going through. Here is a summary of a recent study on dating and celiac disease. I think getting your diet under control, and getting healthy is every celiac's first priority, but learning how to deal with various social relationships while maintain a gluten-free diet isn't discussed often enough. 

 

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
      127,265
    • Most Online (within 30 mins)
      7,748
    Ecacs
    Newest Member
    Ecacs
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Kwinkle
      I’m so confused…

      By Kwinkle · Posted

      Thank you - I am fighting the good fight. I feel like when I see improvement then I go back downhill again.  What I do know is if I can’t get past this fatigue and loss of appetite I’m heading for problems. 
    • Lkg5
      Sprouts packaged roasted, salted nuts - says "made in a facility that processes wheat" - has anyone had a problem?

      By Lkg5 · Posted

      I never buy any nuts from a facility that processes wheat.  It’s not worth the risk.  Surprisingly, Trader Joe’s nuts do not come a factory that processes wheat, and I do not react to them.  I am sensitive to gluten.
    • Scott Adams
      Test

      By Scott Adams · Posted

      If all testing is now completed you may want to let your doctor know that you are starting a gluten-free diet. If you symptoms go away on the diet it is further confirmation that you may have celiac disease, and/or non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.    
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      As long as the B Comlex is gluten-free, it should be helpful to you, especially since you're recently diagnosed and your villi are in the recovery process. You may need to look at further supplements as well, and it's a good idea for your doctor to check levels for many nutrients to see what deficiencies you might have. 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
      Weak stomach digestion after undiagnosed celiacs

      By Scott Adams · Posted

      How long ago were you diagnosed? There are many symptoms and issues for those who are newly diagnosed, and recovery can take a while. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • Create New...