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Gluten free 3 years, still fatigued

lhu7
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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? 

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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 

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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. 

 

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      Getting sick much more often

      By knitty kitty · Posted

      Hello there! @Jordan Carlson , you said "Now the last 3 ish years I have been sick more than I ever have been in my life. Could it be my immune system was so tired/fatigued prior to diagnosis that it just wouldnt turn on anymore? And now that my stress and inflammation is down its functioning stronger?" I think you may have that backwards.  Your immune system was running in high gear with undiagnosed Celiac Disease, and therefore fighting infections like colds and viruses before you had any symptoms.  Now that you've gone gluten free, your immune system may be depressed and not able to mount a strong immune response to colds and viruses because it is running low in essential vitamins and minerals needed for that immune response.  Hence you have more infections and worse symptoms now.   For strong immune responses, our bodies need vitamins and minerals that may be lacking on the gluten free diet.  Supplementing with essential nutrients boosts our ability to absorb the vitamins and minerals while our intestinal villi are healing in the first few years of recovery.   Many are low in vitamins and minerals that help our immune system, like Vitamin D, Vitamin C, zinc, iron, the eight B vitamins, especially Thiamine, selenium, and magnesium.   Have you talked to your doctor and nutritionist about supplementing with vitamins and minerals?   Correcting nutritional deficiencies is frequently overlooked after diagnosis.  
    • Jordan Carlson
      Getting sick much more often

      By Jordan Carlson · Posted

      @trents I do take all the recommended vitamins and excersize regularly. Basically do all things labeled as a healthy lifestyle haha. Thats why I was thinking more this is my immune system now having the energy to fight viruses rather than being too stressed out as I have heard that it is a common thing when your body is over stressed due to underlying autoimmune diseases
    • trents
      Getting sick much more often

      By trents · Posted

      Jordan Carlson, Wheat flour is fortified with vitamins ("enriched") where as gluten free facsimile flours are not. So when you eliminate wheat flour from your diet you may lose a significant source of nutrition. At the same time, gluten-free prepackaged foods are practically devoid of vitamins and minerals, consisting mostly of highly processed high carbohydrate grain substitutes. Lots of rice flour and tapioca. Have you compensated by adding in some high quality gluten free vitamin and mineral supplements? We typically recommend this for new celiacs, especially at the front end of recovery before there has been very much healing of the small bowel villous lining and nutritional absorption is still poor. Edit: I edited my other post to direct it to Sanna King's post.
    • Jordan Carlson
      Getting sick much more often

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      Hey there @trents. I wish I could edit my original post. I am talking about getting a cold way more often, not gluten poisoning.
    • trents
      Getting sick much more often

      By trents · Posted

      Reply to Sanna King: As you have withdrawn gluten from your diet you have lost all tolerance to it that you had when consuming it on a regular basis. This is normal. Not everyone experiences it but it is common. It has been my experience as well. When I was consuming gluten every meal every day for years after the onset of celiac disease but before diagnosis I would experience mild GI symptoms like a little occasional diarrhea. After being gluten free for a significant time, any major exposure to gluten would make me violently ill. Hours of severe cramps and vomiting followed by hours of diarrhea. Like when my wife made me gluten-free biscuits and made herself wheat flour biscuits and I got them mixed up and ate a couple. I am not a super sensitive celiac in the sense of being made ill by small amounts of cross contamination but if I get a significant exposure like I just described it is awful. 
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