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. - suek54 replied to Kayla S's topic in Dermatitis Herpetiformis
      4

      Need advice for some relief!

    2. - MicG replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Test interpretations

    3. - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Test interpretations

    4. - MicG posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Test interpretations

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

    • Total Members
      133,655
    • Most Online (within 30 mins)
      7,748

    Murdy3
    Newest Member
    Murdy3
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

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

  • Posts

    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
    • MicG
      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    • catnapt
      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood work comes back negative for the genes, then I will cancel the endoscopy. If positive, I will try the 2 week gluten challenge and get the endoscopy done. If I can't manage the gluten challenge (I had HORRIBLE symptoms last time and quit after 12 days) then we'll just assume it's celiac disease and go from there. She says she does a full nutrient panel on all her pts every year, that was nice to hear.I'm on so many supplements it would be nice to only have to get the ones I truly need! so yeh, really anxious about the test results for the genes!! I have an identical twin sister so I'd need to tell her if it's positive, she'd prob want to get tested too. *interesting note: when I said if the blood work comes back that I don't have the genes, then I'm in the clear - she said, well,,,,,,not necessarily. But she didn't want to go into as we had a lot to go over. I did make a  mental note of that comment and will ask her when I see her next time.   she was very thorough! I was impressed! she even checked- up on some lab work I had done that my Endo ordered. I like her, I am looking forward to seeing her again. I think I'll get some good advice and info from her she also complimented me on my diet.   said it was a very gut friendly and healthy diet 
×
×
  • 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.