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

Years of exhaustion/stomach pain


Brightstar101

Recommended Posts

Brightstar101 Rookie

Hi friends!

I've been a Celiac for 3 years. What a journey! I have learned alot and tried everything to feel back to my old self again. I have a completely gluten-free house, on B12 shots, changed my diet to whole foods only (that seemed to help alot but I became depressed with low carbs so I had to quit) My liver enzymes are a little high and I have a tender abdomen at times. I've also gained a ton of weight that seems to be bloating. 

I have been to the doctor a million times. I found out that I now have a severe allergy to eggs. I have learned to cut out all the allergens. Dairy, peppers, onions, eggs, high fructose corn syrup and so on. Probiotics hurt my stomach.

I miss having energy! 

I miss feeling healthy! 

I'm so tired of the random stomach pains! What am I missing? Any suggestions please!! 


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

@Brightstar101,

Are you taking any other vitamins?  B12 needs the other B vitamins to work properly.  

There's eight water soluble B vitamins.  B12 needs folate B9, pyridoxine B6, riboflavin B2, niacin B3 and thiamine B1.  

Taking just one B vitamin can throw the others out of whack.  Taking a B Complex supplement along with B12 shots would be more beneficial.  

Depression, high liver enzymes, food sensitivity, tender abdomen, lack of energy and fatigue can be caused by insufficiency in Thiamine (and the other B vitamins).  Gastrointestinal Beriberi has symptoms like these.

The Gluten free diet can be deficient in vitamins because gluten free carbohydrates are not usually enriched with vitamins like gluten containing products.  

With a limited diet due to food sensitivity, malabsorption due to Celiac damage, and a reduction in enriched or fortified foods, vitamin deficiencies can occur.  

Discuss with your doctor or nutritionist the benefits of supplementing with vitamins and minerals while you are recuperating.  Checking for and correcting nutritional deficiencies is part of proper follow up care for Celiac people. 

I was in the same boat.  I took high dose thiamine and a B Complex, magnesium and Vitamin D, and my health greatly improved.  

 

Brightstar101 Rookie

Knitty Kitty,

Thank you for your response! I've started taking  One a day vitamins which seem to have all the vitamins and minerals that your talking about. I need to be more serious about taking them everyday. I've had problems with hidden gluten in my vitamins. Hopefully, my health will improve. Thank you again 😊

Posterboy Mentor
3 hours ago, Brightstar101 said:

Knitty Kitty,

Thank you for your response! I've started taking  One a day vitamins which seem to have all the vitamins and minerals that your talking about. I need to be more serious about taking them everyday. I've had problems with hidden gluten in my vitamins. Hopefully, my health will improve. Thank you again 😊

Brightstar101,

Frequency is key for a B-Complex.....once a day is not enough for B-Complex.

An intense regimen of 2 to 3x a day for 2 to 3 months is usually what it takes to make a lasting impact in B-Vitamins......after that they can be dialed back some as a maintenance dose.  When your urine becomes bright (Neon Yellow) you can cut back on the B-Vitamins some.....it is your kidneys now bypassing B-2 aka Riboflavin....

See this paragraph on B-Vitamins that explain it well from this article entitled "Understanding nutrition (IE Vitamins Minerals and Especially B-Complex Vitamins), in depression and mental illnesses"

Quoting their section on B-Complex Vitamins.....

"B-complex vitamins

Nutrition and depression are intricately and undeniably linked, as suggested by the mounting evidence by researchers in neuropsychiatry. According to a study reported in Neuropsychobiology,[42] supplementation of nine vitamins, 10 times in excess of normal recommended dietary allowance (RDA) for 1 year improved mood in both men and women. The interesting part was that these changes in mood after a year occurred even though the blood status of nine vitamins reached a plateau after 3 months. This mood improvement was particularly associated with improved vitamin B2 and B6 status. In women, baseline vitamin B1 status was linked with poor mood and an improvement in the same after 3 months was associated with improved mood."

Also, Chronic Fatigue has been linked to both Thiamine and Magnesium deficiencies.

Find you a Fat Soluble B-1 like Benfotamin taken with a Magnesium Glycinate and/or Magnesium Citrate (with Meals) and your energy will improve immensely!

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

2 Timothy 2:7  “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

Brightstar101 Rookie
1 hour ago, Posterboy said:

Brightstar101,

Frequency is key for a B-Complex.....once a day is not enough for B-Complex.

An intense regimen of 2 to 3x a day for 2 to 3 months is usually what it takes to make a lasting impact in B-Vitamins......after that they can be dialed back some as a maintenance dose.  When your urine becomes bright (Neon Yellow) you can cut back on the B-Vitamins some.....it is your kidneys now bypassing B-2 aka Riboflavin....

See this paragraph on B-Vitamins that explain it well from this article entitled "Understanding nutrition (IE Vitamins Minerals and Especially B-Complex Vitamins), in depression and mental illnesses"

Quoting their section on B-Complex Vitamins.....

"B-complex vitamins

Nutrition and depression are intricately and undeniably linked, as suggested by the mounting evidence by researchers in neuropsychiatry. According to a study reported in Neuropsychobiology,[42] supplementation of nine vitamins, 10 times in excess of normal recommended dietary allowance (RDA) for 1 year improved mood in both men and women. The interesting part was that these changes in mood after a year occurred even though the blood status of nine vitamins reached a plateau after 3 months. This mood improvement was particularly associated with improved vitamin B2 and B6 status. In women, baseline vitamin B1 status was linked with poor mood and an improvement in the same after 3 months was associated with improved mood."

Also, Chronic Fatigue has been linked to both Thiamine and Magnesium deficiencies.

Find you a Fat Soluble B-1 like Benfotamin taken with a Magnesium Glycinate and/or Magnesium Citrate (with Meals) and your energy will improve immensely!

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

2 Timothy 2:7  “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

@Posterboy,

 

Thank you for your reply! I appreciate your advice and I feel that I need to give this a shot! I do have Chronic Fatigue ever since I was diagnosed years ago and I have tried everything expect increasing certain vitamins and minerals! 

Posterboy Mentor

BrightStar,

You might also want tot start some BetaineHCL (IE powdered Stomach acid with your meals)......ALWAYS drink with plenty of water or tea etc......Water is what drives the process of digestion.

See this article about it...

Entitled "Meal-Time Supplementation with Betaine HCl for Functional Hypochlorhydria: What is the Evidence?"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7238915/

But BEFORE you do this......you might want to try the Baking Soda home test to confirm your Stomach Acid is TOO Low to digest your food now......which will give you more motivation to take the BetaineHCL.....but I caution if do try it .......don't be too conservative.......start out with a "Moderate Amount" say 3 or 4 capsules the first time and work down or up from there......see some of the (resources below) to see why this important.....TOO Little Stomach acid leads to TRUE heartburn! .......read my full blog post on this topic and you will see/understand why this is....

It really can help! (that is taking BetaineHCL with Pepsin) I have done the same thing my self!  I don't do it now.....but it is a nice "Kickstart" to your digestive system.

See this Dr. Jockers article about 5 ways to test to see if you have low stomach acid and how to properly do the Baking Soda test......(down toward the bottom of this link)....

https://drjockers.com/5-ways-test-stomach-acid-levels/

I also wrote a Posterboy blog post about how being low in stomach acid can be a trigger for their symptom's in many if not most Celiac/NCGS patients that might help you to read it..

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

2 Timothy 2:7  “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

cnazrael89 Enthusiast
On 10/14/2022 at 6:15 PM, Posterboy said:

An intense regimen of 2 to 3x a day for 2 to 3 months is usually what it takes to make a lasting impact in B-Vitamins......after that they can be dialed back some as a maintenance dose.  When your urine becomes bright (Neon Yellow) you can cut back on the B-Vitamins some.....it is your kidneys now bypassing B-2 aka Riboflavin.

@Posterboyso I just thought of something kind of interesting. Whenever I used to drink an energy drink (probably 4-5 years ago) I used to have that bright neon yellow urine every single time I would drink one. I never really thought about this but now if I drink an energy drink my urine is just a normal urine appearance or diluted/clear because it just makes me urinate a lot. I just started drinking energy drinks again in the last couple of months after not drinking them for 4 to 5 years. The other odd thing is I'm almost craving energy drinks or drawn to them and I kind of wonder if it is for the b vitamins that are in them? That sounds kind of strange but your comment I quoted above instantly made me think of this and wondered if anyone else has ever had a similar situation?


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master
(edited)

Yes, your body can crave foods that contain the micronutrients your body is low in.

This can be a problem with some Celiacs because their bodies can crave gluten containing products.  

Remember that wheat and other gluten containing grains are Required by law to be enriched with vitamins and minerals lost in processing.  Bread manufacturers have been adding vitamin supplements to your bread.  When you go gluten free your body no longer gets those added vitamins.  You really need to provide vitamins and minerals from other sources, foods and vitamin supplements. 

The gluten free diet can be vitamin deficient if you eat a lot of processed gluten free facsimile foods.  Gluten free facsimile foods are not required to be enriched.  Most are not enriched with enough vitamins to turn carbohydrates into energy.

You must provide sufficient vitamins and minerals to your body.  Since Celiacs have absorption issues, supplements ensure your body gets enough micronutrients to function properly.  

Chronic Fatigue Syndrome is helped with high dose Thiamine

https://pubmed.ncbi.nlm.nih.gov/33210299/

Hope this helps.

Edited by knitty kitty
Add link

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
  • 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. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,955
    • Most Online (within 30 mins)
      7,748

    JodyBledsoe
    Newest Member
    JodyBledsoe
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.