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

Frustrated with Fatigue and Headache Post-Gluten-Free Diet


Lex-

Recommended Posts

Lex- Explorer

I am not diagnosed yet. Have been gluten free for almost 4 months. Felt incredibly good for the first couple of weeks. Eczema disappeared. Fatigue disappeared. Gastrointestinal discomfort disappeared. Then I had a couple of inadvertent gluten exposures with terrible symptoms ensuing - the common celiac symptoms. As the symptoms subsided, I started to feel better again. Not as good as the first couple of weeks but much better compared to the pre-gluten-free time. For the past 2 weeks, however, I have had an unprecedented sense of fatigue, brain fog, and headache. I have no other symptoms generally associated with celiac. Only fatigue and headache. I am guessing it might be nutritional deficiency due to the change in my diet [I understand this happens to many who go gluten free]. 

 

I will be seeing a doctor soon. In the meanwhile, the fatigue is so bad that it's interfering with my daily activities. I have never felt this weak in my life. Few days ago I tried exercising - I thought maybe it would generate some energy. But it made matters worse.

 

If this is indeed due to malnutrition, what nutrients could I be lacking? I have a rather diverse diet with a lot of greens and fruits, so I have no idea what the problem might be. I am getting tired even writing this now.

 

Any advice will be appreciated.


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
18 minutes ago, Lex_ said:

I am not diagnosed yet. Have been gluten free for almost 4 months. Felt incredibly good for the first couple of weeks. Eczema disappeared. Fatigue disappeared. Gastrointestinal discomfort disappeared. Then I had a couple of inadvertent gluten exposures with terrible symptoms ensuing - the common celiac symptoms. As the symptoms subsided, I started to feel better again. Not as good as the first couple of weeks but much better compared to the pre-gluten-free time. For the past 2 weeks, however, I have had an unprecedented sense of fatigue, brain fog, and headache. I have no other symptoms generally associated with celiac. Only fatigue and headache. I am guessing it might be nutritional deficiency due to the change in my diet [I understand this happens to many who go gluten free]. 

 

I will be seeing a doctor soon. In the meanwhile, the fatigue is so bad that it's interfering with my daily activities. I have never felt this weak in my life. Few days ago I tried exercising - I thought maybe it would generate some energy. But it made matters worse.

 

If this is indeed due to malnutrition, what nutrients could I be lacking? I have a rather diverse diet with a lot of greens and fruits, so I have no idea what the problem might be. I am getting tired even writing this now.

 

Any advice will be appreciated.

B-vitamins...most gluten and processed foods are enriched...your basically eating a multivitamin every time you have a slice of bread etc. Look for a full spectrum B-vitamin supplement, others can be magnesium, iron, vitamin d, folate, etc. You mention plenty of greens and fruit so ruling out vitamin A,C,K, and a few others. Hmm did you drop off your carbs too much? If your carb dependent you need more complex carbs from like sweet potatoes, rice etc. And what about fat and protein? I am a keto dieter, my body burns fat instead of carbs for energy so I can say it is quite important to have plenty of fats and protein in your diet. Try snacking on nuts/seeds between meals or making up a protein shake with almond butter in it between meals (again going but what you said you eat vs what you might be missing)

I use Liquid Health for my spectrum B vitamins and vitamin D. Might look into them, being in liquid form you can just add it to a beverage. Might see about magnesium also, huge issue with many with this disease.

On other after thought, your probably already very aware of...but you mention your not "diagnosed yet" you will have to do a gluten challenge of eating gluten for a extended amount of time daily prior to getting tested. Open Original Shared Link

Lex- Explorer
6 minutes ago, Ennis_TX said:

B-vitamins...most gluten and processed foods are enriched...your basically eating a multivitamin every time you have a slice of bread etc. Look for a full spectrum B-vitamin supplement, others can be magnesium, iron, vitamin d, folate, etc. You mention plenty of greens and fruit so ruling out vitamin A,C,K, and a few others. Hmm did you drop off your carbs too much? If your carb dependent you need more complex carbs from like sweet potatoes, rice etc. And what about fat and protein? I am a keto dieter, my body burns fat instead of carbs for energy so I can say it is quite important to have plenty of fats and protein in your diet. Try snacking on nuts/seeds between meals or making up a protein shake with almond butter in it between meals (again going but what you said you eat vs what you might be missing)

I use Liquid Health for my spectrum B vitamins and vitamin D. Might look into them, being in liquid form you can just add it to a beverage. Might see about magnesium also, huge issue with many with this disease.

On other after thought, your probably already very aware of...but you mention your not "diagnosed yet" you will have to do a gluten challenge of eating gluten for a extended amount of time daily prior to getting tested. Open Original Shared Link

Ennis_TX, thank you for your response! I will take heed of all your nutritional pieces of advice, one by one. And yes, I am aware that a gluten marathon is on the horizon soon.

 

Before doing the test, however, I shall try to fortify my diet with the nutrients you mentioned, and report back in a week or two.

 

I think adding some iron supplement is wise too.

 

 

Posterboy Mentor
7 hours ago, Lex_ said:

I will be seeing a doctor soon. In the meanwhile, the fatigue is so bad that it's interfering with my daily activities. I have never felt this weak in my life. Few days ago I tried exercising - I thought maybe it would generate some energy. But it made matters worse.

Lex_

I agree with Ennis_Tx.

You need to take some Magnesium.  It works best as a Magnesium Citrate or Magnesium Glycinate.

Magnesium Citrate are easiest to find.

Take it 2/day for the first couple weeks to see how much more energy you have.

Then you can take it with each meal or 2/day and one hour before bedtime if it is not convenient to take it at work.

If it is working you (right form of as a Magnesium Citrate or Glycinate) you will will experience vivid dreams.

And wake up with enough energy to take on the day.

**** this is not medical advice but it really helped my chronic fatigue symptom's.

It is good for leg cramps too also known as charley horse's.

posterboy,

Gail W Newbie

One other thought to consider is other food allergies/intolerances you may have that you didn’t know of before that could be causing this change.  Is there any food that you may have added in or increased the frequency of eating since removing gluten from your diet?  I know this has happened with me where I took our gluten, started eating more rice and still getting sick till I figured out I have a rice allergy as well!

Lex- Explorer
12 hours ago, Posterboy said:

Lex_

I agree with Ennis_Tx.

You need to take some Magnesium.  It works best as a Magnesium Citrate or Magnesium Glycinate.

Magnesium Citrate are easiest to find.

Take it 2/day for the first couple weeks to see how much more energy you have.

Then you can take it with each meal or 2/day and one hour before bedtime if it is not convenient to take it at work.

If it is working you (right form of as a Magnesium Citrate or Glycinate) you will will experience vivid dreams.

And wake up with enough energy to take on the day.

**** this is not medical advice but it really helped my chronic fatigue symptom's.

It is good for leg cramps too also known as charley horse's.

posterboy,

Posterboy, thank you for your response! 

 

Regarding magnesium, do you think relying on food sources like fruits, bananas in particular, is not enough? Just out of curiosity, when you started taking Magnesiums Citrate supplements, did you already consume enough fruits?

Lex- Explorer
7 hours ago, Gail W said:

One other thought to consider is other food allergies/intolerances you may have that you didn’t know of before that could be causing this change.  Is there any food that you may have added in or increased the frequency of eating since removing gluten from your diet?  I know this has happened with me where I took our gluten, started eating more rice and still getting sick till I figured out I have a rice allergy as well!

Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
10 minutes ago, Lex_ said:

Posterboy, thank you for your response! 

 

Regarding magnesium, do you think relying on food sources like fruits, bananas in particular, is not enough? Just out of curiosity, when you started taking Magnesiums Citrate supplements, did you already consume enough fruits?

In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.

 

9 minutes ago, Lex_ said:

Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.

...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. Open Original Shared Link

Lex- Explorer
58 minutes ago, Ennis_TX said:

...with this disease you can have a food intolerance or allergy crop up out of the blue...

I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.

 

Yes, I certainly need to keep a food diary. Thanks again for the advice.

Posterboy Mentor
On 1/19/2018 at 8:00 AM, Ennis_TX said:

Posterboy, thank you for your response! 

 

Regarding magnesium, do you think relying on food sources like fruits, bananas in particular, is not enough? Just out of curiosity, when you started taking Magnesiums Citrate supplements, did you already consume enough fruits?

Lex_,

Again I am afraid Ennis_Tx is right here.

Ennis_tx eats right and is eating all the right things and still has to take/supplement with Magnesium.

The magnesium is a clue? 

We need magnesium to make energy.

I like to say as chlorophyll is to photosynthesis for the plant so is Magnesium for/to the Animal(s).

Meaning we will run down without it.

It is said "we waste away without enough Magnesium"

Dr. Carolyn Dean wrote the book "The Magnesium Miracle" because people genuinely feel terrific when they take it.

they are able to make energy again and function properly but the question remains  why? are we low in it the first place if we need it so much.

Iron plays the same role in the blood/respiration but people still get IDA.

It turns out low stomach acid limits our ability to absorb Magnesium and Iron.

see this link about the role of gastric acid in Iron absorption.

Open Original Shared Link

How do we know this.  . . well it is has been studied and proven.

look no further than the FDA box warning on PPI's entitled "FDA Drug Safety Communication: Low magnesium levels can be associated with long-term use of Proton Pump Inhibitor drugs (PPIs)"

Open Original Shared Link

now this takes about 6 months of use to become low in magnesium but being low in stomach acid limits our ability to absorb Magnesium and why many people have to take it at 2x to 3x the RDA to get the desired effect.

In fact the FDA says only stopping PPI's will reverses this condition.  Obviously  taking higher amount of Magnesium can help alleviate some of these symptom's but only raising the stomach acid will completely alleviate the condition.

quoting

"Although both patients' hypomagnesemia partially resolved with intravenous replacement, in both cases discontinuation of PPI treatment was necessary to stop ongoing symptoms and to stop magnesium loss."

Hypomagnesimia is critically low Magnesiums akin to IDA.

here is a thread about IDA and why this is so . . .  low stomach acid leads to low Iron levels.

I think it will help explain why Celiac's often have to take Magnesium to help with their chronic fatigue symptom's.

I hope this is helpful but when I helped my stomach acid levels my Magnesium begin to be better absorbed from the food I was eating.

Nuts are good Magnesium sources especially Cashews and Almonds.

So is chocolate hence Ennix_tx cocoa nibs etc. . .

***** this is not medical advice but I know taking Magnesium Citrate helped my energy levels.

posterboy by the grace of God,

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

 

 

 

 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,668
    • Most Online (within 30 mins)
      7,748

    CDR40
    Newest Member
    CDR40
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.