Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Ginger38's topic in Coping with Celiac Disease
      6

      The Struggle Has Overtaken Me

    2. - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    3. - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    4. - Wheatwacked replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    5. - Wheatwacked commented on Scott Adams's article in Origins of Celiac Disease
      19

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

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

    • Total Members
      134,192
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
×
×
  • Create New...